Hysterectomy - the Experts Speak Out: The tide is turning!

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Friday, September 9, 2011

The tide is turning!

The tide is turning!

“I am still hoping to hear more about women who are past it all because they said no. It would be comforting to know there are women out there who had the same horrible symptoms, a big fat confused uterus, lived with it, resisted hysterectomy and are now through menopause and happy that they persevered.”

Women who were told they need a hysterectomy have expressed to HERS a strong desire and need to hear from other women who are/or were determined not to have their uterus and ovaries removed. They need your support. They are fighting pressure from gynecologists, and often well meaning family and friends, to undergo the surgery.

They want to hear from other women who are going through this now, and others whose health problems eventually resolved, either with treatment or just waiting it out until their symptoms subsided.

What gives women the knowledge and power to fight against having their female organs removed? It is the collective experience of vast numbers of hysterectomized women who are sounding the alarm for intact women. These women reveal how they were bullied or ensnared into the operating room, and how the damaging effects of hysterectomy ruined their health, their sex life, their relationships and their careers. The responsibility lies with the doctor to give women correct, factual and complete information on the consequences of hysterectomy and castration. A law requiring doctors to give women HERS female anatomy video, is necessary for informed consent.

Hysterectomized women want "intact" women to know that they, too, were smart, savvy, asked good questions and did not blindly or blithely agree to surgery. The vast majority of hysterectomies are performed on women who agreed only to exploratory surgery, or to conservative surgery such as removal of a fibroid or an ovarian cyst. Virtually all hysterectomies are performed without the information required for informed consent.

Hysterectomized women want you to understand that your good questions may be responded to with untruths or outright lies. They share with you their most private, intimate losses caused by the removal of their female organs. They want you to know that it could be you, that your good questions and research may not protect you from maltreatment. There is no treatment which is able to restore, replace or compensate for the functions of the missing organs.

Please share your fight to keep your female organs. Women desperately want and need to hear from others who prevailed, who remained intact, and to know that she is not the only one determined to keep her female organs!

Labels: adenomyosis, alternatives, cancer, consequences, endometriosis, fibroids, HERS Foundation, HPV, hyperplasia, hysterectomy, Ms Magazine blog, ovaries, sex, support, uterus

206 Comments:

At September 10, 2011 at 12:32 PM , Cathy said...: I'm 50 1/2 years old! I have multiple fibroids all over my uterus. My cycle is erratic, extremely heavy and terribly painful. I'm very low in iron as a result. 3 different gyno's have recommended a hysterectomy. I am fighting it thanks to HERS, but the pain and suffering every month is starting to overwhelm me. I've been struggling since age 35. I know the average age for menopause is age 52. If I can make it to that age, I think I will be home free! If my cycle continues beyond that time I may have to undergo the major surgery of a hysterectomy! I don't want to even think about that and its consequences! I will probably suffer for the rest of my life! That is no way to live! I would love to read others stories similar to mine, but also very importantly, I'd love to read the stories of women who have had this major surgery and how they are managing it and their lives! I think of you all and I hope for the best for all of us!!

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At September 10, 2011 at 1:08 PM , Bobbie said...: I am 45 years old and had a 10 cm fibroid last year that left me extremely anemic leading to great problems in all of my responsibilities and relationships. My longtime OBGYN said hysterectomy was the answer, but research through HERS and other websites helped me to realize there is a better way. Long story short, I went to 5 doctors in my area to see if anyone would do a myomectomy and they all said it was too risky. I was getting distraught. I had a phone consultation with Nora Coffey from HERS. I told her that I didn't want a repeat of symptoms I've seen hysterectomized women in my family experience, and she then told me "you will be the first woman in your family to avoid hysterectomy". I just cried. I so desperately needed someone to support me. I had to travel and ended up having a myomectomy 200 miles away from home in Dallas, TX but it was SO worth it. I am 6 months post surgery and I feel FANTASTIC!!!!! I am a different woman. My husband says he has his wife back. My kids have their mom back. I highly recommend avoiding hysterectomy. I am sick with the lies doctors are promoting so they can line their pockets and pay their golf course fees. I know they are following "standard of care" but we must get this changed!!! One last thing - I do know fibroids can return, which is what doctors kept telling me, but
I have read, and I believe it's true, that the stress in our lives helps produce estrogen that may cause fibroids. So, I've ELIMINATED toxic relationships and habits that caused my greatest stress. I also pray a lot and that brings much peace.
Follow your instinct girls. You will find a doctor to support you if you don't give up. As Nora told me - you may have to travel. That's okay. And don't listen to the hysterectomized women who just tell you about your uterus to "get it out" so you don't have to deal with periods. My periods are only 3 days now!!! If you have questions, email me at bwallaceavp@mac.com. God bless! And God bless HERS and Nora Coffey.
At September 10, 2011 at 1:43 PM , Barbara from TX said...: My story, Barbara Giles Godina, age 79. I am the mother of four adult children.

At age 36, I was told I needed a hysterectomy (HS). I went for a second opinion to a OB doctor who would not be performing any surgery. He could find absolutely no reason for me to have a HS. Later, when going through menopause, my GYN said he would not give me any hormones until I had a HS. That was the last time I saw that doctor. However, at age 40, I had tubal ligation in order to get off birth control pills. My uterus, etc., are all intact and I'm on bioidentical hormones.

At the present time whenever I see a GYN, I only see on who does not perform HS. However, I still inform them I will not have that surgery unless it is a life and death matter.

In 2006, I had Stage III breast cancer; had a partial mastectomy and removal of lymph nodes. I did no radiation or chemotherapy; have not had a mammogram since then and no recurrence of cancer; have no heart disease. The only thing I suffer from is scoliosis pain and digestive problems. The one surgery I had was removal of my gallbladder, which I also believe is a fad operation as I've had lower and upper digestive problems ever since that time in 1975.

Thanks for keep fighting against castrating women by HS. Almost all my friends have had HS and they all insist that it was necessary and that they feel wonderful. I do not believe them; maybe some feel better because it was necessary but not all of them as there are too many!!

This email may be posted with my permission.

PS, Here's another short story. When in the operating room to have a D&C, my doctor was late. As I was talking to the nurse I told her that the doctor wanted to do a HS on me but I thought it was a fad operation. The nurse said: "Oh, honey, you are right. They (the doctors) are bringing women in here and doing Hysterectomies on them as young a 22 years of age. Isn't that amazing as she was amazed and so was I.
At September 10, 2011 at 2:05 PM , Barbara and Connie said...: I'm 63 and the HERS foundation was my salvation when I was told by several physicians that my cysts were so large I needed a hysterectomy. I wrote about my experience in another blog. Will put the link her for those who are interested. http://theragblog.blogspot.com/2010/03/womens-health-heard-about-h-word-lately.html
At September 10, 2011 at 9:29 PM , Sarah said...: I'm 44 with fibroids in my uterine wall (uterus now 21x12x15 cm!), and a 12 cm fibroid on the outside. I feel constant pressure, have frequent urination, occasional incontinence, and sometimes feel sharp pain. A recent ultrasound shows mild kidney damage from the pressure of the tumors against the ureters going to my bladder.

I was told 6 yrs ago (when my uterus was about 8x5x5 cm) that a hysterectomy was the only thing possible, that cutting the tumors out would result in my bleeding out and dying. I read a lot, then found a surgeon who said that wasn't true, she could stitch the uterus up as she worked on the tumors. She said hysterectomy wasn't even on her consent form. I planned much of my year based on that, getting health insurance, researching anesthesia, seeing if alternative treatments could possibly help, arranging for a relative to fly down to help me, etc.

Three weeks before surgery, my surgeon says she'll only do a hysterectomy because I now have an "infinite" number of fibroids. I am alarmed and outraged, and more so now that I have secured a copy of my ultrasound report showing kidney problems, that she never mentioned to me. I have messages to her office to discuss this and will not submit to a hysterectomy.

I am in the thick of researching my options. Nora has been such a blessing, she's helping me so much, listening to me and offering new perspectives based on her extensive knowledge and research. I really appreciate this blog as well, as a forum to discuss our experiences.

I see online that Dr. Levine in Boston, Dr. Parker in Los Angeles, and Dr. Indman in San Jose, CA, all do myomectomies. I'm unemployed, but willing to travel and deepen my debt if it's the only way to have the appropriate surgery done. Does anyone know how to tell if they have good surgical skills?

I'm afraid if my original surgeon (who at least seems to have strong surgical skills) says she's open to doing a myomectomy that she might do a hysterectomy anyway. My need for a myomectomy is so pressing (no pun intended) that I'm relying on the information in this blog to help me remain conscious that she could remove my organs regardless of what she tells me.

I am committed to keeping my uterus and am grateful for the support here.
At September 10, 2011 at 10:03 PM , Carol Vaghar said...: Wow!
After reading all of your comments I remember last year when I had had enough and set about finding a solution to by growing fibroid that was causing excessively heavy periods and anemia. I was 51 with no sign of menopause in sight. I consulted with my former gynecologist who had been pushing me for several years to have a hysterectomy and three other gynecologists. The recommendation was always the same – hysterectomy.
Feeling desperate I began searching all the local hospital websites in the Boston area – one even had a ‘fibroid department’ as I was sifting through all of this information I found a video of a doctor talking about robotic surgery. He was talking about preserving the uterus, about how robotic surgery had made his job so much easier than traditional laparoscopic myomectomy. He is a reproductive endocrinologist so his focus in the video was on patients who were able to become pregnant after robotic assisted myomectomy. I immediately called his office to find out if he would treat an older woman with fibroids. From the moment I met him I felt that I had found an ally. He asked me why I would even consider hysterectomy. He got it! He even wore a pin that said ‘NO TAH’ (total abdominal hysterectomy). So, last November I had my surgery.
Here’s what I have learned:
1. Myomectomy is a far more complicated operation than hysterectomy.
2. Robotic assisted myomectomy, in the hands of a highly skilled surgeon, makes the closing up of the uterus easier.
3. Robot assisted myomectomy is a much longer operation and ‘A SURGEON HAS TO FUNDALMENTALLY BELIEVE THAT WHAT HE IS DOING IS BETTER FOR THE PATIENT – OTHERWISE WHY DO IT.’ – this is a quote from the surgeon.
I have four small scars from the surgery. The first few periods were still heavy now they are normal. I am no longer anemic. I still have my uterus.
Just because somebody wears a white coat it doesn’t give them the right to tell a woman they ‘need a hysterectomy’. The reality is this is the surgery they are comfortable performing they have not had the extra training in less invasive techniques but, in my opinion, they should be giving woman the information about all alternative treatments and not pushing the only treatment option they know how to perform – it just isn’t right.
At September 10, 2011 at 10:24 PM , Carol Vaghar said...: I see that other posts mention their doctors by name: So my surgeon in Boston was Dr. Antonio
Gargiulo - http://www.youtube.com/watch?v=SAZiaeQv8VM
At September 10, 2011 at 10:48 PM , Willow said...: I am 69 years old. About two years ago, I had a terrible problem with heavy periods. I was literally weak from loss of blood. I was on hormone therapy since I was about 45, so my body was used to it but for some reason I was having periods about three weeks out of the month and they were very heavy. I finally found a gyn in the phone book, as I really don't go to doctors too often. He told me to get off the HRT and did a D&C on me. By the way, I had since found out that D&Cs were a very old fashioned treatment and there are better, easier ways of getting the same result. Well, when I got the results of the D&C, I found I had hyperplasia with atypia. I looked it up in the I-net and found that meant I had abnormal cells in an abnormally heavy lining in my uterus. Thus the heavy bleeding was explained. Well my "friend" they gyn said I need a hysterectomy. I asked him if he could do it virginally, and he just looked at me and laughed. He said when he does my hysterectomy, he will fillet me like a fish. He said if he suspects cancer, he always opens up the patient. He said that he had just done a woman and took her uterus as well as her ovaries. (She was still young enough to have children) He said that when they examined the ovaries and uterus, they didn't find cancer, but he still thought that he did the right thing because there could have been.

I went home, devastated. I got in the internet and looked for alternatives to a hysterectomy, even if you have hyperplasia. That's when I found HERS. Their encouraging words, their informative literature, and then finally their telling me that hyperplasia, even with atypia was curable. I did further research on the internet and found a medicine which possibly could cure hyperplasia. I told the gyn what I found out and talked him into giving me a prescription for the meds. (wish I could remember the name) He told me to take it for three months and then come back and he would do the hysterectomy because the pills just would not work. That convinced me to go find another GYN.

Because hyperplasia with atypia means abnormal cells, I decided to see an oncologist gynecologist. I told him what was going on, and he said he saw no reason why I should have a hysterectomy. Well the pills worked, my hyperplasia went away and I am so grateful that I am still whole. I cherish every part of my body. To have a part of me cut out, especially for no reason at all, is unthinkable. I am so thankful that I found HERS on the internet and that they helped me and gave me the support I
so desperately needed.
At September 11, 2011 at 12:16 AM , Winnie said...: am 54 and obgyn who delivered me twice told me that because of my fibroid and anemia that iron pills would not help and began to outline hysterectomy process. Before I left the office, I was quickly followed by his nurse who asked me to sign for the Lupron -- which makes you go into immediate menopause and prepares the fibroids to shrink for hysterectomy (acutally they break down into bits and pieces and makes it worse operation but that's another story). I practically begged him to give me prescirption for iron but he threw a few samples at me and said "it won't help." Well, I've been on iron for about a year and it has helped! I'm not tired. Ferralet is good imo with additional vitamins but it is a prescription. I'm still outraged that I was offered only surgery -- I live in the second largest city in the country with great access to medical care and opinions and you'd think I would have had a better recommendation. My second obgyn said what I have is "so common, let's just keep watch." It's a "she," and well, in my opinion girls, try to go to a female doc for another perspective on thangs.
At September 11, 2011 at 12:18 AM , Dana said...: I still have male doctors pushing me towards a hysterectomy or an IUE processors even though I am now in menopause and my fibroids are asymptomatic. It's kind of a sickness with these guys to push these proceedures on women. In 1991 I finally found a doctor willing to do a myomectomy. But even he failed to remove them all, saying later that he "didn't have time". As a result, those remaining grew to be another problem within seven years. This time I went directly to a Chinese acupuncturist to stop the pain and excess bleeding. After 3 months of weekly needles and daily herbs, the bleeding was back to a normal 4 day period with no pain. I kept my womb and ovaries intact.

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At September 11, 2011 at 12:20 AM , Charmaine said...: I did not make an informed decision when I consented to have a hysterectomy 5 years ago. I regret my decision. My hysterectomy was completely unwarranted. When I complained that I had discovered too late that the surgery was unnecessary, the doctor who had obtained my consent to remove my uterus (and left ovary) by scaring me to believe that fibroids were "life threatening tumours" eventually justified his actions by saying that hysterectomy was the only only "cure" for heavy periods. He said he took out my healthy normal left ovary for good measure to prevent cancer! There is no history of uterine, cervical or ovarian cancers in my family. I wish now that I had just put up with my heavy periods until menopause. These days I have very little faith in doctors. I believe that the hysterectomy industry is driven largely by greed. The more hysterectomies doctors perform, the more money they make. When I complained to a nurse about my unnecessary hysterectomy, she blithely told me, "You don't need a uterus". Another doctor listened to my complaints about post hysterectomy problems like loss of libido, painful sex, teariness, mood swings etc and said "But surely you are glad you don't have periods any more." He prescribed me anti-depressants and expensive "bioidentical" hormones. I don't waste my hard earned money on doctors and medications anymore. My health is now my personal responsibility. I stay away from doctors, hospitals, homeopaths, naturapaths etc. I eat well and exercise regularly and I maintain a positive outlook on life. I am grateful and happy for what I have, especially my family. If I have aches and pains I put up with them - go for a walk, a bike ride or a swim. When I feel down, I drink lots of water and do something I enjoy like spend some time with family or friends. I take no medication at all apart from the occasional aspirin for a bit of arthritis in my knee. I have moved on with my life but there was a time when I was so hurt by what happened to me, I contemplated suicide. I felt so violated and debased by the removal of my female organs I wanted to end my life. I thank God everyday now for my wonderful partner and family. I only wish I had known about HERS before I consented to hysterectomy. Regards, Charmaine Saunders
At September 11, 2011 at 12:22 AM , Katie said...: 8 years my gyn found a fibroid as big as a small orange. My body was a wreck; scary periods, moodiness, digestive issues,pain even to walk. Long story short I went to an oncologist to have it removed, (gyn said it was cancer). I found HERS foundation website and read and researched and prayed & learned alot . On my first apointment, Oncologist wanted to take everything. He said my uterus had two jobs, make babies and cancer. I stood my ground,because of what I read on HERS. I made it clear to him I did not want anything missing but the tumor when I awake. I thank God for wisdom he gave me through HERS. Because in my continued researching I have found information regarding Estrogen dominance and lack of progesteron. Wow, these hormones play a major part in our female bodies. Please, look into this stuff my ladies. Spend time researching estrogen and progesteron, an embalance of these hormones effects too many aspects of the female body to list. So far I am doing well. Fibroid was not cancer, but has returned. Happy to report Mexican wild yam cream, soy beans and soy milk turns out helps in producing progesteron & has kept it small and unnoticeable. "Just say no ladies, God gave us those parts for a reason and not just for babies" Do your research and most of all prayer is a powerful tool.
At September 11, 2011 at 11:37 PM , Marie said...: I went to 4 doctors. 3 said I needed a hysterectomy. My reproductive endocronologist said I did not need one. She said I had been on Seasonique for 2 yrs. without a period and that i may have Pelvic adhesive disease. Well, That is what I had. No endometriosis this time. Scar tissue everywhere from a previous surgery. A hysteretomy for me would be a disaster just creating more scar tissue and giving the adhesive disease more room to grow out of control.
oh, just because you have endometriosis does not mean you can not have children. I had 4 without IVF. I had a laparoscopy to remove the mess and had twins 10 cycles later. That was stage 4 endo. They told me I probably would not conceive. Don't listen. They don't know, only God knows.

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At September 11, 2011 at 11:38 PM , Pam said...: I was so desperate for answers that before surgery I went to prayer healer. He taught me how to command my body to do certain things. So now when I am starting to feel stressed I command the estrogen levels to go down and progesterone levels to come up in Jesus' name. I don't mean to offend anyone but that's what I do. It's powerful. I instantly relax. Just want to keep fibroids away. This guy did pray for the fibroid to die too. After surgery, the surgeon told me that much of the 10cm x 11cm fibroid was necrotic / dead.
At September 12, 2011 at 4:37 PM , Jeri said...: I am a 54 year old female. I have been having painful intercourse for approximately a year and a half. Went to my gynecologist of almost 30 years and told him such.......His AUTOMATIC response, was, and I quote, "Well, we'll just go in and take out your uterus, ovaries, tubes, do a repair on a cystocele and a erectocele and put you on hormones and you will be good to go. Oh, and by the way, your husband will just LOVE it cause you will be so much tighter as well."
" You are kidding me, right?", I screamed at him. He then said to me, "So, are you just attached to your uterus?"
I said, " I dunno, are YOU attached to your balls, your scrotum, your penis?"
As a matter of fact, they are ATTACHED to me as well. And I for one intend to keep them.
He wasNOT a happy camper at this point......
I left his office that day, angry, upset, and bewildered....I had a uterine suspension in my early 20's and I figured that is what I needed again. He, of course, negated that. I also asked about a pessary, wanting to try anything non-invasive first. His comment to that was, "NO, they are just dirty and nasty and stinky">WOW, I knew at this point, he is wanting my body parts OUT!

Thank God for a dear cousin's wife which offered me the HERS Foundation website. I had already acquired another 3 opinions by now, and most were under the same assumption that I could indeed USE a hysterectomy, but agreed that I also QUALIFIED for a uterine suspension. One offered to do it, with mesh, I said no to that. The other said he didn't do THAT SURGERY>but he does hysterectomies! My urologist offered to do a repair to a cystocele and a erectocele. But thought his surgery would go easier if I had my uterus out.......Needless to say, I listened to my own body and my own heart and my GOD>I knew I didNOT need a hysterectomy. I have NO DISEASED BODY PARTS>just painful intercourse. When you have a painful toenail, you don't cut your toe off.........you fix it, whatever that means. I have found another doc at this point, whom, upon exam, told me "You don't even have a erectocele, only a slight cystocele and a barely fallen uterus. So to do surgery at this point would put you in total misery. You would most likely never be able to have sex again. He said it would so foreshorten my vagina as to cause me immense pain and suffering. He did tell me to use a local hormone cream and lots of lubricant and to keep having sex.......WOW!

Now after all this, the overall moral to the story is..........you can't believe everything you hear, but you CAN believe what your heart and your head and your body is telling you. I have found a new point of view while studying about my own body. I want to help other women to find information like I have so YOU TOO CAN MAKE INFORMED CHOICES>without information, that just isNOT possible. Hope to blog again soon. Keep your chin up and see as many doctors as it takes to find someone who believes in you keeping your insides. THEY ARE YOUR INSIDES!!

Have also been simultaneously interviewing every woman that will listen and tell her story. I am simply amazed and dismayed at all the stories. So much suffering and so many lies and half truths being told to women to get them on a table. Don't give up. That is why the rest of us are here for you. Love and blessings to each. THe book, THE WISDOM OF MENOPAUSE by Christine Northrup is fantastic, as is, MISINFORMED CONSENT, and any literature from the HERS foundation. Until next time, God be with you all on your personal journey of freedom with your own body.
At September 12, 2011 at 7:33 PM , Mad as Hell said...: I only wish I’d found HERS before becoming a victim of the fraud of hysterectomy. Since my gyn failed to follow the recommendation of the oncologist to whom he referred me, I thought I had a good chance of him being disciplined by my state’s medical board (Missouri). Of course, that didn’t happen; they said that he did nothing wrong by removing my uterus and both ovaries for a benign ovarian cyst. I know this is typical of states’ medical boards. They protect doctors instead of patients.
At September 13, 2011 at 12:07 AM , Fran said...: I was forced to have a hysterectomy almost 4 year ago. I had always been told that I had a bicornuate uterus and the doctor said the ablation I wanted wouldn't work. She did several tests before the operation and only AFTER she removed my uterus (after my stating I had changed my mind and didn't want surgery) did she tell me that ablation probably would have worked. I tried filing a complaint with the MS medical board but she lied in her rebuttal and no action was taken. This has had a profound affect on my marriage (I want a divorce from an unsupportive husband). I do not tell any of my friends that I have had the surgery because I am humiliated that I, an intelligent woman, was duped.

Get your info...get it from several doctors. And remember, just because they have MD after their name doesn't mean they are looking out for your best interest.

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At September 13, 2011 at 12:12 AM , Chloe said...: This is for "Sarah".

I believe Dr. Parker would give you a myommectomy and not a hysterectomy if you told him you did not want a hysterectomy. That is my belief based on my communications with him. I heard him talk on TV about the high number of unnecessary hysterectomies.

Based on what you wrote, I would never trust the initial doctor you went to. You will go in for a myommectomy (if she even knows how to do one) and will come out without your uterus/ovaries.

Nora knows of surgeons that are skilled at myommectomies if you are willing to travel. I would check with Nora before selecting a doctor. Please do not end up like so many other women. Chloe
At September 13, 2011 at 11:36 AM , Hillary said...: I have a prolapsed bladder and uterus. Living in a small town, my PA referred me to doctors in our nearest city and told me to "prepare for a hysterectomy". But I found HERS website and did no such thing. I've seen a couple doctors about the prolapse and both claim a hysterectomy is the only solution. HERS suggested a pessary; no doctor has mentioned this. My PA said a pessary was messy, smelly and had to be cleaned and inserted by a doctor. I'm not in pain and I'm not incontinent and don't want to become that way so I just keep pushing everything back in when it's troublesome.

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At September 13, 2011 at 11:40 AM , HERS Foundation said...: Hillary, the problems the doctor said you could experience from using a pessary only happen if he/she do not tell you how to clean the pessary. Go to HERS website's Home page and scroll down to the link "uterine prolapse". There is detailed information about pessaries, and how to clean them. If you still have questions about pessary use, please contact HERS at 610.667.7757 to arrange a telephone appointment to speak with a counselor.
At September 13, 2011 at 6:59 PM , Joanne Gibson said...: Gee wizz, doctors, look, I am not dead!!!
I said NO to a complete hysterectomy three years ago thanks to HERs. Three doctors and the "best" surgeon in town insisted that I would be dead within two years without it. They scared my husband into supporting them, claiming my large multiple ovarioan cysts might be cancerous or would certainly become so soon.
Absolutely no one but HERs supported me. My docotr insisted that I did not have the right to make the decision unilaterally, but must make it with him, and the only option was to take out everything possible.
I quit seeing any of these doctors. BUt, it was so scary....I finally found a journal article which stated that just because ovarian cysts are larrge does not mean they have a greater liklihood of becoming cancerous.

WIsh I could find a doctor who would remove the cysts and nothing else... but that's not the way they work. They will promise you anything, but reality is that in the operating room they can do whatever they want.
Moreove, their answer to a question about risks is laughable.... they all say." there's some risk in all operations." Duh!! I am a Statistician and that answer does not satisfy me.
I have no symptoms of ovarian cancer, but they still left me scared about it.

I am proud of my decision!!!
At September 13, 2011 at 7:20 PM , Emma said...: I had a consultation today with my doctor and previously we discussed the 4 procedures available to me that I mentioned in my previous post. Today he asked which would it be HTA or Hysterectomy. I told him that I did not feel I needed a Hysterectomy just to stop me from having a period. I don't have any pain or any other symptoms and felt I needed my uterus. That it served a purpose in my body and that I didn't want to just take it out without absolutely having to do so. And that this was not an absolute for me. I also said I did not want to go through the HTA procedure because again I was fine with my period just not having it every 10 to 15 days. I told him I wanted to go with the myomectomy (which was not an option he gave me today) and he said it would not stop the bleeding and the tumors may grow back. I reiterated I was fine with having a monthly period on a regular basis as long as my iron level was not too low. I also informed him of my age and the likelihood of the tumors returning was slim to none and if they did the rate of growth would be slow. He stated that he did not think it would be of much benefit to have the tumors removed. He concluded that the best solution would be to do nothing at this point and to try to control my irregular flow with birth control. And to come back in six months for another ultrasound. It appears that nothing will be done at this point unless I change my mind which is what he told me. I thank the HERS Foundation for educating me on this subject and saving me from an unncessry procedure that could've been devestating to my lifelong health.

Thanks again.
At September 13, 2011 at 10:40 PM , Anonymous said...: This message is for Joanne Gibson,

There is a doctor that removes cysts and does not perform hysterectomies ever! Please contact Nora for his name.

Chloe
At September 13, 2011 at 10:44 PM , Mary said...: All you women contemplating hysterectomy please read my story. A doctor did a complete hysterectomy on me at 40 saying women do better without ovaries and took everything. I was duped. Even the nurses were like you don't want ovarian cancer. They bring up the cancer word to scare you. It put my body into a tizzy. I went in for heavy bleeding which hindsight now if someone would have put me on natural progesterone it would have taken care of it. I am left with a person I don't even recognize physically, mentally and emotionally. I have put on 50 lbs, went through thyroid cancer (yes you can get it after a hysterectomy), lupus, fibromyalgia and suicidal depression. I am a shell of what I used to be. I have been to 38 doctors, Mayo Clinic and Scripps anything to try and get some normalcy back but what you don't understand is the doctors do not even study hormones. I go and I know more than them. Am I giving up . No, I will go to 100 doctors if I have to. Have I tried everything. Yes, shots, pills, bio-identicals, creams, gels, pellets, You name it they tried it on me. Did they piss off the wrong girl. Yes. I am going public with this. I have a record coming out next year that they said will be a smash hit, It will be because it is going to give me the forum I need to stop them from butchering women. I think doctors that do complete hysterectomies should be charged with murder.
At September 13, 2011 at 10:47 PM , Lenore said...: Ten years ago, I was told I should "immediately" have a hysterectomy or at least uterine ablation, or "I would be sorry." I was 39. I am now 49. Stress and my age have caused my fibroids to grow, and yes, I look pregnant, which is aggravating, and some days I have some pain, but that is NOTHING compared to what a hysterectomy would have done to me and taken from me. When I eat a very low fat diet, with a large amount of vegetables, my period is much lighter. In order to shrink the fibroids somewhat, I am preparing for a medically supervised water fast. In order to do this, I must eat a perfect diet, lose about 30 pounds so that my body will have no fat to burn at the time of the fast. This has worked well for many women. I don't expect them to disappear because they are large, but I am sure they will get smaller. At any rate, while I have these huge fibroids, I generally am living a perfectly normal life! I combat anemia by drinking fresh-made kale juice daily. It helps. If I had had a hysterectomy, I am sure that would not be the case. I have friends and relatives who had hysterectomies, and although they say they had no negative after affects, they have all had health problems - including heart disease.
At September 13, 2011 at 10:52 PM , Chloe said...: This message is for Joanne Gibson,

There is a doctor that removes cysts and does not perform hysterectomies ever! Please contact Nora for his name.

Chloe
At September 13, 2011 at 10:59 PM , Chloe said...: This message is for Lenore:

Have you tried natural progesterone cream? You probably already know that fibroids atrophy after menopause so hopefully, that won't be long. Congratulations for not being deceived!

Chloe
At September 13, 2011 at 11:00 PM , Chloe said...: Here is my story and I hope “Cathy” is reading this.

I am 52 years old and just finished 12 months of no periods. At 48 years of age, I started having heavy and irregular periods. After a 60 day period,I became anemic. I went to a gynecologist who told me I had cancer and needed a hysterectomy before even examining me. At the next appt, he told me “I had a tumor and it must come out!” I went for a second opinion and that doctor said I had fibroids and put me on Provera. My blood pressure skyrocketed and I had to go off the dangerous drug in 2 weeks. So that doctor then told me I had to have a hysterectomy. Ladies, please read about how Provera is made… they use such cruelty to innocent pregnant mares to make it and it is a dangerous drug! Please stay away from it and do not let any doctor ever tell you it is the same as bio-identical hormones because it is not. I am living proof that it is not. Please keep reading….

I could tell at the first appointment with the second doctorthat he was a liar as well. That is when I started my search to read everything I could get my hands on to educate myself on what was going on with my body. The most helpful book was “what your doctor may not tell you about perimenopause” by Dr. John Lee. I learned I was in perimenopause and about hormone imbalances and how natural it can be to have irregular and heavy periods because during the time of perimenopause because that is when a woman does not make as much progesterone. This causes estrogen dominance and therefore heavy and irregular periods.

I contacted Nora and I also contacted one of the authors of one of the other books I read and got a referral for a doctor in a nearby town. He did blood work and a hysterescope of my uterus. I learned I had a hormone imbalance and the fibroids were on the outside wall of my uterus so they were therefore not causing my problems. He gave me Prometrium and 3 rounds if iron through an IV. My periods became regular and my anemia was gone. A few months later, I went into menopause. I now use bio-identical hormone cream each evening for hot flashes and sleepfor this time of my life and I feel absolutely wonderful! I no longer have periods and I am intact.

Ladies, please do not automatically believe that fibroids are causing you problems. Many doctors do not understand about hormones and they are paid a lot of money to perform hysterectomies. You never need a hysterectomy for fibroids!

If you need a doctor referral, please contact Nora and she will help you on the road to getting a good doctor. There are good guy doctors out there.. you just have to persevere to find them. That is what I did and it paid off. Please educate yourself about your body and do not believe that because you have known your doctor for many years that he is looking out for your best interest. They want you to feel comforable and safe with them… that is how they make their living. There are doctors out there that are good guys, but if you ever hear one say you need a hysterectomy for anything other than cancer, please contact Nora for help. Even pre-cancer cells can be turned around.

Please know that this time of perimenopause will pass and then you will enter into a new chapter of your life and you can stay intact. It will pass, I promise you that.

Chloe
At September 13, 2011 at 11:09 PM , Chloe said...: Here is my story and I hope “Cathy” is reading this.

I am 52 years old and just finished 12 months of no periods. At 48 years of age, I started having heavy and irregular periods. After a 60 day period,I became anemic. I went to a gynecologist who told me I had cancer and needed a hysterectomy before even examining me. At the next appt, he told me “I had a tumor and it must come out!” I went for a second opinion and that doctor said I had fibroids and put me on Provera. My blood pressure skyrocketed and I had to go off the dangerous drug in 2 weeks. So that doctor then told me I had to have a hysterectomy. Ladies, please read about how Provera is made… they use such cruelty to innocent pregnant mares to make it and it is a dangerous drug! Please stay away from it and do not let any doctor ever tell you it is the same as bio-identical hormones because it is not. I am living proof that it is not. Please keep reading….

I could tell at the first appointment with the second doctorthat he was a liar as well. That is when I started my search to read everything I could get my hands on to educate myself on what was going on with my body. The most helpful book was “what your doctor may not tell you about perimenopause” by Dr. John Lee. I learned I was in perimenopause and about hormone imbalances and how natural it can be to have irregular and heavy periods because during the time of perimenopause because that is when a woman does not make as much progesterone. This causes estrogen dominance and therefore heavy and irregular periods.

I contacted Nora and I also contacted one of the authors of one of the other books I read and got a referral for a doctor in a nearby town. He did blood work and a hysterescope of my uterus. I learned I had a hormone imbalance and the fibroids were on the outside wall of my uterus so they were therefore not causing my problems. He gave me Prometrium and 3 rounds if iron through an IV. My periods became regular and my anemia was gone. A few months later, I went into menopause. I now use bio-identical hormone cream each evening for hot flashes and sleepfor this time of my life and I feel absolutely wonderful! I no longer have periods and I am intact.

Ladies, please do not automatically believe that fibroids are causing you problems. Many doctors do not understand about hormones and they are paid a lot of money to perform hysterectomies. You never need a hysterectomy for fibroids!

If you need a doctor referral, please contact Nora and she will help you on the road to getting a good doctor. There are good guy doctors out there.. you just have to persevere to find them. That is what I did and it paid off. Please educate yourself about your body and do not believe that because you have known your doctor for many years that he is looking out for your best interest. They want you to feel comforable and safe with them… that is how they make their living. There are doctors out there that are good guys, but if you ever hear one say you need a hysterectomy for anything other than cancer, please contact Nora for help. Even pre-cancer cells can be turned around.

Please know that this time of perimenopause will pass and then you will enter into a new chapter of your life and you can stay intact. It will pass, I promise you that.

Chloe
At September 13, 2011 at 11:41 PM , jean313 said...: Two comments: Dr. Oz dealt with the problem of fibroids on his new season show opener Sept. 12; he said other treatments besides hysterectomy work as well. Check out his website for his input www.doctoroz.coom. I don't have them, so really didn't pay much attention but was amazed at the size of the fibroids he had to display. The third page of this website has suggestions to avoid hysterectomy.

But, I do have pelvic prolapse and three separate gyn's since 1997 have repeatedly urged me to have a hysterectomy and a sling procedure done to correct a cystocele, rectocele and dropped uterus. Now I read that the mesh support is rife with problems and should not be considered. I have used a pessary successfully for almost 25 years and feel vindicated my decision was a wise one. I did talk to someone at HERS several years ago and appreciate what this group is advocating.

jean313
At September 13, 2011 at 11:57 PM , InggieNYC said...: I live in NYC, am 38 years old and I had HUGE FIBROIDS in my uterus. Many of the doctors I consulted with, including some of the "top" doctors in NYC, all told me that if surgery was attempted, it may result in a hysterectomy. I totally refused because I wanted to be a mother some day. So I found the HERS foundation online and last year, I had a myomectomy performed by Dr. Mitchel Levine, of Cambridge, MA. The HERS foundation saved my life, in that they recommended Dr. Levine to me. I traveled to Massachusetts several times and finally had the surgery done in November, 2010. It is now September 2010 and I am 5 1/2 months pregnant. I am super happy about being able to be pregnant with my first baby. I owe all of this to (1) HERS foundation and (2) Dr. Mitchell Levine. Don't let any doctor convince you that your fibroids are TOO BIG and hysterectomy is recommended...run as far and as fast as you can away from those types of doctors, some of which are women. Go figure.
Ingrid
At September 14, 2011 at 12:28 AM , Bobbie said...: I am heartbroken by some of the stories on here - intelligent women "duped" by doctors they trusted.
Jeri - Your blog brings some laughter to a really painful topic.
To add to ridiculous doctor statements - and this is for women reading these blogs still stunned that your doc could lead you wrong -
My doctor did not even tell me I had a fibroid tumor. I started feeling this lump, I went in, and he said "Oh, you've got a tumor. I told you that, didn't I?" Uh.. think I would have remembered that little piece of info. He pushed for a hysterectomy. I went into shock and research. My iron was a 6! He put me on iron and wanted to see me a week later. By then.. I was armed with info from HERS! After expressing my doubts about the need for the hysterectomy he actually stormed out of the room, and said "You can keep your damned uterus". This is the OB that delivered my children and that I had been with for 11 years!
The next doctor: "Why do you want to keep your uterus?".. then, "How long are you going to keep this up?" (the fight to save it as I was bleeding nearly to death searching for alternatives).
Doctor #3 shaking her head: "Myomectomy is too risky".
Doctor #4 visit was one of the best. I had a list of symptoms hysterectomy causes and I was showing them to the nurse. She said "We have people in here all of the time with those symptoms". The doc comes in and does his big hysterectomy sell. I ask, "how will it affect my sex life .. my orgasms". He says "I don't know - you'll have to let me know after you recover from surgery".
Wow - thanks doc! I'll get back to you on that!
Fortunately - I followed my gut instinct and, as my story earlier on this blog indicates.
Thank you again HERS.
At September 14, 2011 at 2:21 AM , dbull said...: I am 50 1/2 years old, have been suffering from 9 or so fibroids, biggest is half the size of my little finger. Started having heavy periods about 2-3 years ago, at first I thought they were a symptom of oncoming menopause. Then felt a lump in my abdomen, so went to the doctor and was told they were probably fibroids, 'nothing to worry about'. But was advised to see a surgeon, who said the only way to remove them was a hysterectomy! Wow, I thought, no way am I having any surgery. So I saw another doctor who suggested some medication to alleviate the symptoms. For the last year, each month for 4 days at the first sign of my period, to alleviate pain and bleeding I take: tranexamic acid (reduces bleeding) and mefenamic acid ( alleviates pain). They do help (although I hate taking medication of any sort)
I am now 36 or so periods into this fibroid nightmare, I am exasperated with the heavy bleeding, which goes on even longer than pre-fibroid days. So I went back to my 2nd doctor and told him how fed up I was with my periods and no menopause symptoms yet, what could I do? And guess what he said? Yes you got it...hysterectomy. Feeling desperate, I booked it for about 3 weeks time. Went home and hit the internet. Found the HERS website and thought NO WAY am I having this crazy sugary. I had no idea what removing the uterus really meant, I thought, well I guess it is useless if I have had my kids. But once you read about it, you realise that removing the uterus is a very big deal, and women have suffered terribly as a result. I thank God I saw this website. It saved me from this crazy horrific butchering. I emailed the surgeon that night to cancel my surgery.
I am now looking for alternatives. I have looked at UFE, but don't like the sounds of blocking the major veins that feed the uterus. Myomectomy I am interested in, but do not know a surgeon in London ( UK) that can perform this more complex surgery. And am less inclined for an invasive surgery. I would love to hear from anyone who has had MR guided focused ultrasound treatment. There is a hospital in London which can do it. It is not inexpensive, but I like the fact that it is not invasive surgery. If it would lighten the periods for the next while, until menopause, I would be so grateful! Would love to hear from other gals who have found this treatment successful .
At September 14, 2011 at 11:05 AM , HERS Foundation said...: dbull, kudos on holding your ground and staying intact! Your decision not to undergo UAE is another good choice, UAE is damaging. Focused ultrasound, like other procedures and surgeries that do not remove fibroids, leave the necrotic (dead) tissue in your body, which can cause infection which can lead to hysterectomy. Less often, it can cause gangrene, which also leads to hysterectomy.

Is it possible for you to go to the US for a myomectomy?
At September 14, 2011 at 11:52 AM , Mad as Hell said...: I'm so glad to hear all your stories of how you're persevering to save your organs! I'm hard at work every day on forums trying to spread the word but too few women heed my warnings. And some get very defensive.
At September 14, 2011 at 12:05 PM , Mad as Hell said...: Mary -
I can relate to doctor shopping in an attempt to "fix" you. I'm so sorry this triggered so many autoimmune issues! Have you looked into Low Dose Naltrexone (LDN)? On one of the forums I frequent, a couple of women considering a hyst have fibromyalgia and one has lupus. I told them it would probably get worse after a hyst (plus all the other health problems) but they proceeded to have the hyst anyway. I can't believe the number of women in their 20's and 30's having their uterus and ovaries removed!

I'm thrilled you're working on a forum to expose this fraud. My gyn also pissed off the wrong girl!

Would love to communicate with you. If you're interested, Nora can put you in touch with me.
At September 14, 2011 at 12:48 PM , Susan F said...: Hello ladies and thank you for all your stories and empowerment! I am 48 years old with a large fibroid that is causing much pressure and frequent urination and even incontinence so I am looking to have a myomectomy. Others on here have posted that Nora was a help in suggesting doctors. This disappointingly has not been my experience, so I would be so grateful and appreciative if you ladies who have found a skilled surgeon who does not advocate hysterectomy to share their names. I live in New Jersey. Thank you so much and best of luck to all of you!!
At September 14, 2011 at 1:14 PM , Carole said...: What infuriates me as well is that no research is done to establish how fibroids can be prevented from growing so large.
As long as there is big money in hysterectomies and drug therapies, this research will never happen. Just like breast cancer.

(Please use your name or an alias so that others can follow your comments. Anonymous posts will be given an alias. Thank you!)
At September 14, 2011 at 4:19 PM , Jackie said...: Ok, I am now 60 and Cathy's comments resonated with me. My fibroids are all over and within my uterine walls and grew over period of 27 years to the point where my uterus is the size of a 26 week pregnant woman's. Since my mother went thru menopause at 40 or so I thought I might too so why risk a hysterectomy; the fibroids will shrink from blood depravation. NOT YET! Onset of menopause for me was closer to age 53. Now I am wondering if I did the right thing. My consequence has been this: I have had periodic bleeding that lasts from 2 days to 3 weeks over the last 7 years. Ultrasounds and other tests eliminated the fear of cancer. The doctor thinks (doesn't know for sure) that the bleeding is caused by dying fibroids?? My uterus is still enlarged after 7 years and my cervix has turned towards the back so I cannot have a PAP smear unless the doctor is able to pull it forward and take the sample. OUCH! There are consequences to consider regardless of the route we choose. Doctors don't seem to know enough about the consequences of allowing the fibroidal uterus to stay intact so we can't really make a good decision about what is right for us.

(Please use your name or an alias so that others can follow your comments. Anonymous posts will be given an alias. Thank you!)
At September 14, 2011 at 4:21 PM , Charlotte said...: The problem also with the lack of research is that if I go to my boss and say, "No, I cannot work overtime because I have this medical condition and it is made worse by fatigue; I demand a fair and balanced work schedule," I have no support from the medical establishment. If I have a heart problem, it is completely socially acceptable to say, "Sorry, I can't be working overtime anymore." But fibroids? Why do you need more time for sleep, exercise, and home-cooking? It's all in your head. Just get your uterus cut-out. Aren't you "emancipated?"

Clearly fibroids cannot be a "natural" occurrence when they are causing pain and compromising other organs, or making sex impossible - much less being asked when the baby is due when you are 50. So why is there no literature on prevention? Clearly it is also related to inflammation. Why no studies on that?
One might be genetically prone to fibroids, but bad genes are "turned on" by environment. We need to know what is making these things grow out-of-control. If the cards were dealt already in our childhoods because of hormones in dairy and meat, then that needs to be made public so that we can protect our daughters and granddaughters.

(Please use your name or an alias so that others can follow your comments. Anonymous posts will be given an alias. Thank you!)
At September 14, 2011 at 4:22 PM , Mad as Hell said...: I was hysterectomized shortly before my 50th birthday. If my belly had been big, I could have easily passed to be young enough to be pregnant (I looked 10 years younger). I aged RAPIDLY post-op and my once flat belly continues to grow as my spine compresses. Few women acknowledge these post-hyst changes to their figure.
At September 14, 2011 at 5:16 PM , Becky said...: I found a pretty good solution to horrific periods and cramps.

I'm 50 and have had horrendous periods since I was 12. I have been rushed to emergency three times since 2005, haemorrhaging. One time, the doctor asked if I needed a priest. I had to wear adult diapers PLUS ultra tampons to work during my "regular" periods. A nightmare.

I've tried every kind of hormone, from the lightest BC pills on up. Estrogen helped, but was unsustainable due to pushing my blood pressure to 160.

I also visited Chinese doctors and naturopaths, whose natural remedies/acupuncture helped temporarily. I spent a lot of money on smelly herbs and painful sessions. They told me that I had such an "energy block", they could have helped me when I was a teenager, but it was too late.

I had surgery for a fibroid that took up half my uterus, in 2007.

In preparation for surgery, the doctor put me on a month's worth of Megestrol, a synthetic progesterone. Megestrol narrows the blood vessels to your uterus, to prevent catastrophic bleeding during surgery.

Within 3 months, the fibroid had grown back, and I was in the ER, haemorrhaging. I was told I had to have another surgery, and a hystero would be best. I said, "No way."

The solution: I found a sympathetic Nurse Practitioner who really listens and cares. She respected my anti-hystero stance, and my reluctance to have another surgery. She listened to my idea that I could use Megestrol to control monthly bleeding. My periods otherwise will NOT stop. I bled continuously from early January 2010, till end of April 2010.

I begin taking Megestrol on Day 5, and bleeding tapers off by Day 7. I use this medication no more than 3 days per month. Using it continuously is a bad idea: It can cause a stroke or heart attack, and causes tremendous appetite increase. My appetite remains the same with only 2-3 days' use.

Mid-2010, my fibroid disappeared on its own. I believe it's because I found a woman-sympathetic practitioner, and courageously refused any suggestions of hysterectomy. I think my body reacted in gratitude. I also drew and painted pictures of a healthy, pink uterus and just showered love on my body.

I am not particularly New Agey. I just got FURIOUS that anyone would suggest I be castrated, and when I faced my anger, these paintings and a great feeling of self love emerged. Talking to Nora and reading HERS literature helped me get there.

Since April 2010, I've controlled bleeding very well with meditation and Megestrol.

The best medication for period cramps is Naproxen, a non-steroidal anti-inflammatory. You can get it by 'scrip or at the drugstore. It can cause stomach bleeding, so talk to your doctor. It greatly reduces uterine tenderness.

Hopefully, this combined solution will continue to work for me. I hope this helps someone end the suffering.

Signed,
Feeling Normal and Looking Forward to Menopause!

(Please use your name or an alias so that others can follow your comments. Anonymous posts will be given an alias. Thank you!)
At September 14, 2011 at 7:22 PM , TQ said...: The unreasonableness surrounding hysterectomy is striking:

- to assume their is an actual need for hysterectomies at the epidemic levels that are currently in practice

- to continually prescribe ineffective treatments for benign and non-life threatening female conditions; and then say hysterectomy is necessary or the only option

- to tell women on the one hand to do their research, speak to their doctors, know their options and then not publicly provide the anatomical facts of the female organs so women are informed and aware of the anatomical effects of uterine removal

- to presume that the removal of uterine and/or ovarian functions is a health restoring strategy

- to coin the term “surgical menopause” to denote the "abnormal" state created by surgical removal of the uterus given that women in “normal” menopause retain uterine/ovarian functions

- to justify a surgical procedure that can only impair health simply for the removal of benign symptoms

- to box women into a no-win situation between ineffective treatments and health impairing surgery as the only two options

- to think this is about what women are choosing for themselves; versus what’s being done to women.
At September 14, 2011 at 8:43 PM , Sue said...: As one who was duped by cancer scare tactics and, thus, left maimed forever more, I must admit to mixed feelings in reading so many brave struggles...It is not that I do not wish victorious intactness for each and every one of you, but, that I wish that I still had the chance at such a struggle myself. Sadly, that is not to be..
Grabbing what little composure I have left these castrated days, I did want to add something that might help those struggling with fibroids, bleeding & hormone issues.
It is my understanding that outside, environmental estrogens can play havoc with our endocrine systems. For example, much of the beef in the US has been given estrogen to promote the cow's growth...which, in turn, produces more marketable beef.
Well,unfortunately, these outside estrogens can be far stronger than our bodies own and can serve to disrupt our hormones.
Ladies, at one of the HERS conferences, I personally met a woman who had had huge fibroids as well as bleeding issues that had disappeared when she followed a diet from the weston price organization. Amazingly enough, the woman kept her parts all the while she lost like fifty pounds...
Something else, a 1977 South African Medical Journal article showed a 92.5% cure rate of abnormal uterine bleeding (AUB) with treatment of the real Vit A
(not betacarotene). Real Vit A can be found in butter, egg yolk, full-fat milk, liver, and.. cod liver oil?
Guess what our grandmothers oft took for menopause? Un-huh...cod liver oil! Just like the pessary-- what was old is newly embraceable again.
The thing here, though, is that, well, if you try the diet changes and the cod liver oil and it doesn't work, you've still lost
nothing. Quite a difference from surgery, eh?
One last thing regarding the post about progesterone...
An article in the Atlanta Journal Constitution dated 01-02-11 titled, "New Hope in brain injury research," by Carrie Teegardin, starts out with the intriguing question, "Why would women recover better from brain injuries than men?" The article goes on to describe Emory University professor
Donald Stein's research and, quoting the article, "After years of research in the lab, he found a simple answer in progesterone. The developmental hormone turned out to have a remarkable ability to help lab rats recover from brain injuries. And Stein suspected that it could also help people recover from the devastating effects of car crashes, falls and assaults.
Stein's theory immediately encountered resistance in the scientific and medical community. "Everybody said this is ridiculous, it's just a female hormone, it's not going to work. You're a dreamer, " Stein said.
The article goes on to note that, again quoting the article, "Stein is no longer the only believer. Emory University is now leading a major evaluation of Stein's theory, with a study sponsored by the National Institutes of Health that is testing the healing possibilities of progesterone on brain injury patients at 17 medical centers in 15 states."
Growling.."It is just a female hormone", indeed! Just like our ovaries and our uteri are just female parts...My best lay advice?Beware the gender discrimination that is all too rampant in the medical field-- and stick ever closer to Nora & HERS.
At September 14, 2011 at 10:15 PM , Lee said...: Are you able to travel to get a myommectomy? Are there not skilled surgeons that do myommectomies in New Jersey?
At September 14, 2011 at 10:17 PM , Susan F said...: Hi Lee, I have been dealing with a surgeon who, for a mainstream doctor, is not bad but still comes from the mindset of hey, just have a hysterectomy though he says it is ultimately up to me. I just thought I would ask if anyone could refer me to a doctor/s they have used and liked in my area. I could travel, tho would depend on where it was. Thanks
At September 14, 2011 at 11:38 PM , Verna said...: I am 49 years old, I had a fibroid embolism (in lieu of hysterectomy) 10 years ago due to excess bleeding and a 7 cm fibroid. The bleeding was controlled, but the fibroid calcified.

Last year I had trouble with irregular periods and Drs again recommended hysterectomy. I had a new growing 4 cm fibroid along with the calcified 7 cm. I ran across a supplement called Estrosmart (a combination of herbs http://www.healthyimmunity.com/products/Estrosmart.asp). I began taking it last September and shortly thereafter I started constantly discharging a scentless mucus along with calcium bits.

In January I discovered iodine. (http://breastcancerchoices.org/ and http://health.groups.yahoo.com/group/iodine/) I've been taking 25-200 mg iodine(yes, mg not mcg)along with vit C, magnesium, niacin, selenium, sea salt and estrosmart for the past 9 months.

In June I had an ultra sound that showed the calcified fibroid was 50% dissolved, but the growing one had expanded to 10 cm. That is when I resolved to up the iodine to 200 mg which I just reached a month ago. I am feeling much better than a year ago. My fibromyalgia symptoms are gone, my periods have returned to normal with less bleeding. I have more energy and less muscle pains and strains. I feel warm again. I am wearing size 12 instead of 16.

I plan to go in for another ultrasound in December and I am sure the growing fibroid will be shrinking. The discharge has almost ended.

Please research iodine and hypothyroidism. I believe most of us are deficient in iodine and are suffering from hypothyroidism as a result. An improperly operating thyroid results in improper hormone levels. Hormones are what drive our sex organs.
At September 15, 2011 at 12:23 AM , Susan said...: 3 years ago I was told by a gynocologist that I needed an immediate and complete hysterectomy. I had a history of fibroids, was experiencing a very heavy menstrual flow, my hemoglobin level went down to 8 mg/dl but the clincher was that my CA 125 level was 60. The Dr. had not even done a uterine biopsy at the time he had recommended the hysterectomy. I researched CA 125 and found that it was not a specific test, that it is often elevated during the menstrual cycle or when a woman has fibroids. I had both. I went to a different gynocologist, who, in my opinion was also a "nut", she put me on high doses of birth control pills. Due to my anemia and accompanying exhaustion and inactivity, I ended up with a blood clot in my left calf. I went to a 3rd gynocologist equiped with all my research. At first he still said I should have a hysterectomy but when I discussed my research, he agreed that I was probably right. He performed a simple D & C. That was my last menstrual cycle. I've had no bleeding since. My CA 125 level which I monitor carefully and on a regular basis has since then been in the normal range. I had consulted with the HERS foundation when this was all going on and was "put off" by being told that I needed to lose weight. My BMI was 27, I weighed 137 lbs but I'm only 4'11". Since then I did sign up with a weight loss program and lost 30 lbs. While I struggle always to keep the weight down and always will, I now do believe that being overweight contributed to my fibroid problem. Fat makes estrogen which stimulates uterine growth. I am now happily post menopausal. I will always watch for signs and syptoms of problems but I still have all my female body parts!
At September 15, 2011 at 2:47 AM , Purpose said...: I was 40 and had a complete hysterectomy eight years ago, if my story doesn't scare you I don't know what will. I have been to 38 doctors, Mayo Clinic and Scripps trying to get any kind of normalcy back. If I didn't have a son, I know I would have ended my life. I have been to regular doctors, bio identical doctors, naturalpaths, you name it. I have tried pills, pellets, creams, gels, orals and anything you can think of. It has caused a 50 lb weight gain, thyroid cancer, fibromyalgia, suicidal depression, fatigue. All because a doctor took my ovaries without telling me the consequences of such a thing. He murdered me. I am not even the person that I was, Do NOT let them scare you into "you don't want ovarian cancer" your chances of that are less than 1 percent. I would give anything to go back and I even told him if the ovaries looked good, keep them, he took them anyway, I am sure he made more money that way....They used to do this and the young women would end up in an asylum simply cause you can not do such a drastic thing to the human body.
I did not know anything about HERS back then and it upsets me that this subject was never addressed on Oprah or something with a huge platform like that to prevent this from happening and it would have saved me such heartache.
Well they pissed off the wrong girl, I have a song coming out being recorded by a huge artist. It will give me the platform I need to talk to women and educate them about something that will ruin their lives. It's high time women weren't being lied to about what really can happen.
At September 15, 2011 at 6:39 AM , Anonymous said...: Susan,
Are you able to travel to Denver, Colorado for a myommectomy?

Lee
At September 15, 2011 at 9:45 AM , Susan said...: I'm 51 & had a myomectomy in June for a huge fibroid (I was still having periods & there's no history of any uterine or breast cancer in my family). Unfortunately, it turned out to be a high grade LEIOMYOSARCOMA instead - I did ask about a new test they have for screening the fibroid for cancer (before the myomectomy), but the doctor said it wasn't reliable! In July I had a complete hysterectomy & I will begin chemo later this month. There is a major drop in libido with this operation - I used to feel moderate to major flashes of arousal throughout the day, now it's down to VAGUE arousal every few days. I do feel "lucky" as it were, to be able to achieve orgasm at all - but they are of the medium intensity only, with no uterine contractions (obviously), which I do miss. A hysterectomy is a huge deal to go through. You need tons of time - probably a year - and all the support you can seek out. With fibroids, the cancer risk is slight, but it does exist!
At September 15, 2011 at 10:12 AM , HERS Foundation said...: Susan, I am so sorry that you are one of the less than 1% of women who had a leiomyosarcoma. Although it's a tiny percentage, but when it's you, it's 100% you.

It is surprising that the gynecologist did not differentiate the mass from a fibroid by ultrasound or CT scan. Fibroids and leiomyosarcoma have a different appearance on imaging studies. Gynecologists often refer to fibroids as "ugly" because they are lobulated (irregular in shape), as opposed to leiomyosarcoma which are almost a perfect sphere (round). Did you have any imaging studies prior to the surgery? Was the leiomyosarcoma in your uterus, or was it on the outside, such as in a ligament?
At September 15, 2011 at 12:11 PM , Kitty W said...: I'm 54. Three years ago I was told that I needed the radical hysterectomy because of several fibroids (no cancer) and endometriosis. The same thing happened to my mom when she was my age. She had the hysterectomy and passionately advised against my having it. Basically, I didn't want to deal with the recovery time. So, I decided to loose weight and eat right. For me, that was minimizing wheat and sweets. I hired a trainer who was careful with my joints. (Ask questions - sometimes your trainer doesn't pay attention to your body. Don't be afraid to sweat!) The investment was worth it. As a friend of mine said, you can pay a trainer now or a doctor later. My periods have stopped. (Exercise through the monthly pain also helped.) I feel as well as someone who has mild arthritis can. I continue to exercise which minimizes menopausal/post menopausal symptoms. I work with youth. Sometimes I think I have more energy than them. Sweat is better than sweets!
At September 15, 2011 at 1:37 PM , Anonymous said...: I just said NO to three or four gyne specialists for hysterectomy because of heavy bleeding/anemia from huge fibroid tumors. One even said to me "you don't need it {uterus} anymore" I considered going to PA or CA for surgical removal of tumors only. But soldiered on. Ate alot of bing cherries :) Heard they help with bleeding. Just lived with it. Had to leave yoga class with mat around waist a couple times but I LIVED. It's been over 5 - 6 years. I am no longer having a period. I have all my lady bits. And I am happy I was not one of their victims.
At September 15, 2011 at 3:28 PM , Jayne.n said...: HERS has been my life line! I lost my left ovary when I was 30 - went on to have to lovely boys within 2 years. Then last year, 14 years after losing my left ovary, I had a large cyst in my remaining ovary and the (female) specialist suggested a hysterectomy, she said because of my age most women in my position just say take the lot! I COULD HAVE SLAPPED HER FACE... I asked her did I need a hysterectomy and she said NO... I did my reseach including e-mails to and from HERS Foundation (they provided me with the most amazing support) I asked for another specialist who not only saved my ovary but he did this keyhole too. I have a friend who had cancer and she had to have a hysterectomy to save her life and I think that this is the only time we should consider having it done when its a life saving operation. I think you will always find someone on here who has been though something similar that you can chat to and get first hand support and advice. Jayne.n
At September 15, 2011 at 3:33 PM , Waiting Patiently said...: I've enjoyed reading everyone's comments on this blog and feel quite confirmed in my decision to avoid hysterectomy even in the face of multiple fibroids and severe anemia. I've consulted with Nora several times (thanks, Nora) and, as a result, had an FSH test that shows my levels to be 33.0 in the follicular phase. I'm told that means menopause will be "soon". I'm 56 years old.

Can anyone tell me how soon is "soon"? I've been anemic for several years and the lack of activity tolerance is making my muscles get very weak. I push myself to get things done everyday (painted the chicken coop yesterday which REALLY wore me out?)but often go to bed so tired my whole body hurts like a toothache.

I had to have a blood transfusion two years ago and that really helped. My husband wants me to do another one since I am not electing to address this problem surgically. I really don't want to do another transfusion if menopause will be "soon".

Am I wrong in believing menopause is going to solve my problems or will there be new problems to face? Any advice is appreciated.

PS - to the blogger who suggested the Weston A Price foods, I wholeheartedly agree and do follow their guidelines.
At September 15, 2011 at 4:52 PM , Sarah said...: I just got a second opinion from a gynecologist. They do myomectomies, so I was hoping to be presented with balanced options. Nope.

She looked at my ultrasound report (large fibroids, subserosol), but not the images.

What do you recommmend? "Hysterectomy is the standard of care for women over 40. What do you need your uterus for?"

(blink. How do I answer that when I'm on the defensive already. I don't know, it's a healthy organ, just need tumors out, want my organs, my ovarian hormones, my blood vessels, my nerves, my sexual feeling, my structural support.)

How many hysterectomies have you done? "Hundreds!"

How many myomectomies have you done? (long pause, like she can't remember) "Three to ten a year. With a myomectomy, you are risking the need for another surgery, and all surgeries carry risk."

"Hysterectomies solve the problem of your fibroids. They won't grow back." Yes, but what about the negative effects after a hysterectomy? "There are many risks from any surgery, including chronic pain, infection and death." Are there any negative effects of hysterectomy following a successful surgery? "What do you think are the negative effects?" You're the gynecologist. "I'm not sure. Not that I've seen."

What about higher risk for heart disease and the possibility of partial or complete ovarian failure? "That's very rare, I've never seen it." What about early menopause? She spoke of a woman who "was going to go into menopause anyway." What about the dozens of testimonials describing problems like loss of sexual sensation, incontinence, and prolapse? "Those could be one in a million."

"I certainly would not do a myomectomy on you, and I wouldn't do a hysterectomy on you. You should tell your surgeon that you've decided to keep your uterus, and that you have your reasons, even though they might be wrong."

"You could take 100 gynecologists and they would all tell you to get a hysterectomy. There was a big study in Maine saying that 90% of the women were happy with it."

I talked about myomectomies requiring more training, so gynecologists do hysterectomies rather than refer to specialists. She said, "You are making scathing comments about gynecologists."

Her entire attitude towards me was condescending, like I was making a huge mistake, that the only good and smart option was a hysterectomy which would completely solve everything, and that my research to the contrary was meaningless.

I know that hysterectomies are damaging, but I'm having trouble locating journal articles to back this up. Also, is there a reason HERS doesn't openly list myomectomy specialists?

My surgery is scheduled a week from today. I have a choice: get a partial myomectomy from my surgeon, with my insurance deductible already fully paid, OR, travel to see a specialist who will remove every fibroid and have to max out every credit card I have plus get new credit cards, to the tune of $25,000, and delay my grad school by years. Not easy.
At September 15, 2011 at 8:38 PM , Lee said...: Sarah,
I would not trust your surgeon... I believe from what you wrote that you will go in expecting a partial myommectomy and will come out with a hysterectomy. Have you tried natural progesterone cream. Maybe you are estrogen dominant. Estrogen feeds fibroids. Please talk with Nora before you decide to get a hysterectomy. If it cost $10 for a hysterectomy , I would not get one. Not on your life! You will look forward to health problems for the rest of your life! You may want to read the blogs again and hear from the women that went through it and also read the stories from the women that avoided it and get some ideas.

Lee
At September 15, 2011 at 8:39 PM , Anonymous said...: Susan F.,
Can you travel to Colorado for a myommectomy? Some people are willing to travel and have the means and others are not.

Lee
At September 15, 2011 at 8:58 PM , HERS Foundation said...: Sarah,

I'm glad you asked the question about why HERS does not list doctors who are skilled at performing myomectomies. High among the reasons for not listing their names is that a doctors practice and skills may change. There have been a few gynecologists who had consistently good outcomes at the time that we referred to them, but when that changed and their outcomes were not as good as they been, we stopped referring to them. A online list, or one that is printed, may be retained by women who would have no way of knowing if any of them no longer have the same outcomes.
At September 15, 2011 at 9:03 PM , Rosita said...: I'm almost 59, and I had a myomectomy by Dr. Mitchell Levine when I was 44. He is a fantastic surgeon and I had no complications. My fibroid problem was primarily size-related - luckily I did not have "bleeders". Around age 50 I started having heavy bleeding problems from more fibroids and visited Dr. Levine again. He recommended toughing it out until menopause, or if the bleeding got worse, ablation of the uterine lining. He was also willing to do another myomectomy. I decided to wait, and when my periods stopped abruptly at age 52 (right on schedule!) the fibroids shrank, and of course no bleeding continued. I also went to several docs originally that said I had to have a hysterectomy, then I found HERS and was referred over to Dr. Levine. I am very glad I saved my "parts". And recovery from the myomectomey was nowhere near as bad as the anxiety I had over "winding up" with a hysterectomy. I suggest getting a myomectomy from an experienced surgeon like Dr. Levine, with the understanding that fibroids may continue to grow and cause future problems. However, that is not the case for everyone, and of course once your uterus is gone, there is no going back.
Good luck to all and if possible visit Dr. Levine for a consultation if nothing else.
At September 15, 2011 at 9:07 PM , Anonymous said...: Nora,
Sarah could call you, however and obtain a current doctor's name that performs myommectomes well that she would be safe with, right?

Maybe Sarah is not aware of that. Her one doctor now that gives the impression that she is going to do a hysterectomy once she gets in there is not her only choice.

I find it hard to believe that she will get a hysterectomy for almost nothing but end up in credit card debt for $25K with a myommectomy.

Mary
At September 15, 2011 at 9:21 PM , HERS Foundation said...: Thanks, Mary, yes anyone seeking referral to a gynecologist for treatment of fibroids and other conditions can obtain a referral by calling HERS at 610.667.7757. Printed materials, such as medical journal articles and materials published by HERS are available by email. Go to HERS website at www.hersfoundation.org and fill out the contact form. At the end of the form there is a box for comments where you can request the specific information you would like to receive.
At September 15, 2011 at 9:46 PM , Mad as Hell said...: Sarah,
I agree with Lee; you're putting yourself at risk for a hysterectomy with that gyn's attitude. Revising the consent form may protect you but may not. And her myomectomy skills may not be the best.

Get a referral from HERS and then appeal to your insurance company to cover the "full" myomectomy if the doctor is out-of-network. There was a woman in California who had an ovarian cyst. Her gyn wanted to remove the ovary but she refused. She found a non-network surgeon to do a cystectomy and he helped her file an appeal. Blue Cross Blue Shield refused to pay so she took it to the CA Insurance Board and BCBS lost. They had to pay 100% of the cost of the surgery plus a fine.

So fight for what's best for your health - you're worth it!
At September 15, 2011 at 9:48 PM , HERS Foundation said...: Kudos to every woman who has told us about their experience with doctors, those who remain intact, and the courageous hysterectomized women who informed you about the damaging effects of hysterectomy. You are all women of power!

If every woman tells 10 women what they have learned, the ripple effect will become a tidal wave, saving millions more women.
At September 15, 2011 at 11:15 PM , Lee said...: For Susan F,
Dr. Mitchell Levine is mentioned for doing a myommectomy and he appears to be in MA. Maybe that would be close to New Jersey. But I would privately consult with Nora first.

Lee
At September 15, 2011 at 11:16 PM , Chloe said...: Waiting Patiently,
Have you tried iron injections with an IV? That did wonders for me. I did a series of 3 and that was several years ago. I also use natural progesterone. The two together stopped my irregular and heavy periods and returned my energy and a few months later, I went into menopause.

Chloe
At September 16, 2011 at 6:28 AM , Susan F said...: Lee, I need to find out if my insurance would cover anyone out of state as I don't know that I can afford it otherwise. I have to say that seeing people continuously say "ask Nora, ask Nora" is frustrating to me as receiving a referral for a doctor was my number 1 reason for contacting HERS and after 3 phone conversations with Nora just ended up more upset from what in my opinion are scare tactics and being told that around a 16 week size fibroid at my age is "normal" size (There is nothing normal about this!!) and walking away without an appropriate doctor referral. Living in the tri-state area I thought for sure HERS would be able to point me to someone they felt was trustworthy! I do recognize the good HERS does in opening womens' eyes to the fact that many hysterectomies are not necessary and am grateful for a place to turn to share experience and hope with other women. So, again, if anyone knows of an experienced surgeon to do a myomectomy in the New Jersey area I would appreciate it! Thanks!
At September 16, 2011 at 10:18 AM , HERS Foundation said...: Susan, you were most likely given a referral to a doctor in New York city, and several other doctors who are not in the tri-state area. When HERS refers women to a doctor it's because that doctor has expertise in treating their particular problem. Most doctors are not equally good at treating all conditions.

It is unfortunate that HERS has not heard of a gynecologist in New Jersey who has consistently good outcomes performing myomectomies. As Nora always tells women, when she is not able to refer them to someone locally, that does not mean that no one exists in their area who is an expert in performing myomectomies, has consistently good outcomes, and that they will not switch the surgery from myomectomy to hysterectomy. It only means that HERS has not heard of them. Family and friends may have heard of someone locally that you can interview with the Myomectomy Q&A HERS sent you. It gives you the questions to ask that help you determine if the doctor has consistently good outcomes. More importantly, it gives you the answers you should expect. Knowing the questions is not enough, you need to know the answers you should expect from someone who holds themselves out to be an expert in performing myomectomies.

It's a little baffling that if the size of your uterus and fibroids are normal at your age that you thought that was a scare tactic.

In any event, please do not hesitate to call HERS if we can be of any help.
At September 16, 2011 at 4:21 PM , Susan f said...: HERS Foundation - I do not remember receiving a myomectomy Q&A - I will look for it on the website. Thank you for mentioning it as it sounds like it could be a helpful tool. For clarification, firstly I was not scared, I was appalled at the statement that a 16 week fibroid is normal size for a 48 yr old woman. Normal=no tumor growing in my uterus. Secondly, the scare tactics I referred to were how it is presented that hysterectomy=ruined life. I will absolutely do all I can to preserve my uterus as from the outset my intuition has spoken loudly to not have it removed, but in all fairness for a more balanced view I personally know women who have had hysterectomies and they have told me it did not ruin their lives. They are performed way too often, the medical mindset needs to change and women need information to make well-informed choices. In this regard HERS is doing a great job in educating women and in providing a forum for those unfortunate women who have been adversely affected by this often unnecessary surgery.
At September 16, 2011 at 5:35 PM , Lenore said...: I just have to wonder about women who say they are "just fine" after hysterectomy. Many do not know that the health problems they have had after the hysterectomy are directly related to it, and their doctors never told them about the possible consequences, so they do not connect the dots. I have a friend who had hysterectomy who knows nothing about hers, does not complain about any after effects, but although she is thin and vivacious, has had a number of health issues since her hysterectomy, including some heart problems, despite her relatively young age. And it seems that the number of cases where there are no complications such as bladder or bowel perforations, etc., are the exception rather than the rule. I know I don't want to play Russian roulette with my physical and mental health. I also know women who are convinced their hysterectomy was harmless, and yet their husbands and children say that their personalities have changed, and not necessarily for the better. Another woman I know says she is happy she is rid of her very large fibroids, and she has not gained weight, but frankly she looks much older than she used to, and no one told her, either, that the hysterectomy would do much more than remove her fibroids. I don't think that HERS uses scare tactics. I think Nora and HERs give women the whole truth, and I am extremely grateful to have found them before I allowed myself to be needlessly hysterectomized.
At September 16, 2011 at 7:44 PM , TQ said...: I would think that the true scare tactic is the presentation "no hysterectomy=ruined life".

As this is the message given to each woman who individualy visits a doctors office, this is the message given to the overall society and it's how women find themselves on a surgeon's table and then post-operatively defending how the lost of uniquely female functions has had no negative bearing on their lives.
At September 16, 2011 at 10:57 PM , Lee said...: Susan F.,
I wish I knew a doctor in New Jersey but I do not. I mentioned Dr. Levine thinking he might work since he is at least in your part of the country. If you find your insurance will cover for a doctor in Colorado or another state, please let it be known and maybe that is the answer. I also highly recommend natural progesterone cream. Estrogen dominance (without progesterone to counteract it) feeds fibroids. Dr. John Lee (ob/gyn) who is the pioneer of bio-identical hormones has a website where you can purchase it. I hope it all works out for you.
At September 16, 2011 at 11:02 PM , HERS Foundation said...: Lee, I agree with all of your comments, they're spot on, except for using progesterone cream. Progesterone, whether pharmaceutical, bio-identical or in a yam cream, makes fibroids grow.

Susan F., are you concerned about insurance paying for you to go out of network?
At September 17, 2011 at 10:21 PM , Anonymous said...: All I can say is I have been using bio-identical estrogen and progesterone for 3 years now and my fibroids have not grown. Menopause is seamless for me because of the hormones and I am grateful.

Lee
At September 18, 2011 at 1:27 PM , HERS Foundation said...: Lee, that's great that bio-identical hormones have helped you with menopausal symptoms, and that your fibroids have not grown. It's unusual for fibroids to not grow when taking hormones of any kind, whether they are pharmaceutical, bio-identical or an estrogen stimulating plant that grows in the back yard.

Anything that stimulates abnormal levels of estrogen puts women at greater risk for breast cancer and endometrial cancer, and progesterone also puts women at a higher risk of breast cancer. Some women choose to use pharmaceutical or bio-identical hormones even when they are aware of the risks, and that's the decision that is right for them. Everyone needs the information about risks to choose what they feel will be right for them.
At September 18, 2011 at 6:18 PM , Lee said...: Your comment about progesterone (not progestin)increasing the risk of breast cancer goes against Dr. John Lee (ob/gyn and bio-identical hormone pioneer)findings. He is absolutely against hysterectomies unless there is advanced cancer.

I guess I am agreeing to disagree with you about bio-identical hormones but I wish you the best in your crusade against hysterectomy.
At September 18, 2011 at 6:38 PM , HERS Foundation said...: Lee, we may end up agreeing to disagree, but let's explore this important topic first,

In the medical journal article "Counseling Postmenopausal Women about
Bioidentical Hormones: Ten Discussion Points for
Practicing Physicians"
J Am Board Fam Med. 2011 Mar-Apr;24(2):202-10. Review.
By Richa Sood, MD, Lynne Shuster, MD, Robin Smith, MD, Ann Vincent, MD,
and Aminah Jatoi, MD

there are several important statements that convey how little is know about the risks of bio-identical hormones because there have not been any scientific large scale studies. One of the comments of interest is this: "The absorption of transdermal “bioidentical”
progesterone cream can be variable and unpredictable;
thus, its use for opposing the effects of estrogen on the uterine endometrium are not recommended.32 Over-the-counter yam cream for “natural” progestational effect also is not recommended because humans cannot convert yams to progesterone."

In another medical journal article "Hormones and breast cancer: evidence and implications for consideration of risks and benefits of hormone replacement therapy." in the J Womens Health. 1999 Apr;8(3):347-57 by Colditz GA, it states "The increase in risk of breast cancer with increasing duration of use, which does not vary substantially across studies, offers further evidence for a causal relation."

I recently learned more about breast cancer, endometrial cancer and blood clots that can cause a stroke than I ever wanted to know. A close family member is being treated for breast cancer. I attended her classes at the hospital where we were educated about what women with breast cancer were warned they must avoid because it increases their risk of breast cancer and it decreases the effectiveness of breast cancer treatment. They were told not to take any hormones of any kind, including phyto and bioidentical hormones, and they were given a list of estrogen stimulating foods to avoid. First on the list was any and all soy products, follow by flax, and a long list of other foods.

If you have to avoid taking bioidentical and all other forms of hormones because they increase your risk of breast cancer and blood clots, is any amount of any type of hormone that is not endogenous (produced by and in your body) safe?

I hope that entering into a dialogue about this will enlighten the women and men who read HERS blog.
At September 18, 2011 at 8:12 PM , Lee said...: Thank you for your thoughts. I am not going to be monitoring this site or contributing anymore comments. I agree to just disagree.

Lee
At September 18, 2011 at 9:08 PM , TQ said...: Thanks for the insight into the question of hormone use, I think it was helpful to many.
At September 19, 2011 at 11:09 AM , HERS Foundation said...: When posting a link to your own blog or an organization it will only be permitted to remain on HERS blog if you identify yourself by your first and last name.

Thank you for your cooperation.
At September 20, 2011 at 6:52 PM , Gracie said...: It has been over 23 years since my surgery. I went in for hot-flashes and ended up with a hysterectomy for a pea-sized fibroid. I was sick instantly and still am to this day, especially in the mornings. Everyday is a struggle, but with God's help and prayer we can do this together, hand in hand.

I was a hair stylist and was about to open my own salon up when this took place. I can remember trying to make myself look nice. It would take me all morning to put my make-up on and comb my hair. I am a strong-willed and alittle stubborn person which I am sure has helped me cope with this.

It wasn't easy at first to go on. but then, I would look at my two young sons and knew I couldn't leave them without a Mother. I thank God I found the HERS Foundation to get some answers as to why I was feeling so sick. I had gone from doctor to doctor and all I would hear is, 'it's all in your head'. I read book after book on hysterectomies. I always ended crying my eyes out that a doctor could castrate me and I didn't even know it. I trusted the doctor so much that I believed him when he said it wouldn't change anything and I would feel better than ever. At that time, I didn't have a computer to look up information.

I found another way to get back at the doctor. I started writing editorials in local newspapers about the surgery and the harm it does to your body. (You too can do this). I have editorials I can send you and you can put these in your local newspapers. Have you written on the HERS Blog, if not, do so? I truly believe this helps maintain your sanity. Have you named your doctor on the HERS web-site? Do so. Is your family supportive of what you are going through? My family is and my sister has gone to HERS Conferences with me and she also writes editorials and is always talking to women and men.

I lost the career I had always wanted to do. I went to cosmetology school when my boys were 3 and 5. I was working 5 days, then 4 days, 2 days and finally had to quit. I just didn't have the energy to keep working. I was very hyper doing a dozen things at once. We built our own beautiful 4 bedroom home, doing everything ourselves. I was on every school committee and church group and teaching sunday school 10 years.

I am now divorced and if you are married, your husband has to read what this surgery does to a woman because a man is just affected as a woman. His wife was taken away from him the day you laid on the table and had a hysterectomy and castration (if they took your ovaries). We all miss that energertic and beautiful person we were. I hope once you get yourself healed, you will help other women and men deal with what you and all of us are dealing with.

This has happened to you and you now have to take care of yourself. Don't let the doctor take that from you! He has taken everything else that made you healthy. When you are sad, pick up the phone and call me. When you feel you can't go on, pick up the phone and call me. When you need some encouraging words, call me. HERS has my number and email.
At September 27, 2011 at 4:21 PM , Sarah said...: Sarah here. I am recovering nicely from a well-done myomectomy, and have my period now, proof of my intact uterus. I did trust my original surgeon, but certainly not the other gyn's who told me hyst was my only option.

My doctor was given the wrong report from radiology, I confirmed this, and when she got the correct one, she said that I didn't need a hyst and that she was furious, and very sorry for my two weeks of intensive research when I had planned a much-needed week off.

She removed an 18 cm (7" diameter) fibroid, a 5 cm fibroid tucked under my bladder, and about 6 others. The ones she left are mere specks and she says it's very unlikely they will grow to be large. She said I have a normal size uterus now, and healthy ovaries, fallopian tubes, and saw my appendix as well.

I went to UCSF. The operating team were top notch, the anesthesiologist responded to my requests for the least fat soluble anesthetics in low doses, and the nurses were terrific. I was off narcotics before leaving the hospital and walking outside 4 days after surgery.

My insurance is not great, huge deductible, but covered the operation almost completely.

HERS, thanks for being here to support women. It was my research and phone calls, my insistence on a myomectomy, and contacting my surgeon repeatedly that got my doctor and I on the same page before my pre-op appointments. She apologized profusely and described the myomectomy, of which she's done 1,000, and I felt comfortable and trusting. I was right, just as I was right about needing a myomectomy as the correct surgery. The second opinion gyn saw the correct report and backed up my doctor's incorrect diagnosis based on an incorrect report!

Ladies, trust your intuition above all else. Gather your information, do your research, and make decisions on what you know is right for you, not what anyone else tells you.
At October 3, 2011 at 4:36 PM , Felicia said...: Seems to me that if you want an alternative treatment, you have to be rich.

I did have uterine cancer and everything was taken out. I wish they had just removed the tumor. I wish I hadn't done the radiation afterwards...

I wish I had told them to leave what was left of my ovaries...I had a 13cm cyst on my right ovary, so the doctor did a lateral incision to be able to take it out w/out breaking.

I had no insurance, and no possibility of traveling anywhere else for treatment.
At October 8, 2011 at 10:49 AM , Mad as Hell said...: I'm especially appalled and saddened at the number of young women (some barely out of their teens) who're being told they need or should have a hysterectomy. These gyns will stop at nothing to de-sex women. And too many women are encouraging them or at least fail to encourage them to seek other treatments. Sadly, they tend to listen to these women and their doctors instead of me.
At October 9, 2011 at 6:43 PM , HERS Foundation said...: For every woman who did not heed your warning, there are many who did. You are more likely to hear about and be saddened by the women who went ahead with the surgery. Women who avoided hysterectomy because of the information you gave them are happily leading their lives, they no longer need to talk about hysterectomy, thanks to your information and warnng.

Every woman you give information to about the functions of the female organs and the consequences of their removal will educate other women. They may not tell you, but from the calls we receive at HERS from women who read what you and thousands of other women have written on blogs and comments on articles tells women the real story.

You, and thousands of other women who have been speaking out, educating, informing and warning other women, are the alarm bell that is finally turning the tide. We hear it from women every day at HERS. Women are saying NO, HELL NO!, to doctors who want to remove their female organs.

Keep telling women and men that hysterectomy ruins women's bodies and destroys lives. Tell them to pass the information along to at least ten more people. The ripple effect crosses the boundaries of cities, states and countries.

Call or email HERS and ask for Hysterectomy Pamphlets to hand out when you talk with people. You can ask HERS for the digital form of the Hysterectomy Pamphlet so that you can email it or take it to a copy center and have them print the pamphlet. Give them to the person who cuts your hair, doctors, waitresses in restaurants, lawyers, flight attendants and cashiers in the grocery store.

I hand out HERS Hysterectomy Pamphlet every place I go, I say "Here is some important information that you and every woman in your life needs to know". I leave pamphlets in bathrooms in train stations and airports all over the world.

Most likely some will go in the trash, but for every one that is read there is a very good chance that you have saved a woman's life.

Nora Coffey
At October 14, 2011 at 11:54 PM , Women who are Listening said...: We love you Nora Coffey!
At October 18, 2011 at 3:56 PM , Gerry said...: I have chosen the lesser of two evils- which means I choose to use hormone therapy, in spite of the cancer risk. Post TAHBSO (in my 30's), I experienced declining health (cardio, osteo, bladder, bowel, cognitive, skin, hair, weight gain, psych & emotional deterioration, basically everything on the list of surgical meno problems). Life was not worth living, but I had two kids to live for and had to figure out a way to pull myself back together.
After several years of trying different hormone combinations, delivery methods and dosing, i finally found a better "balance". In no way do these hormones replace what i lost, but at least they have improved the quality of my life. Again- I am very unhappy about having to take hormones, but at least my health has improved significantly. I choose quality of life, since I am young. No doctor, no "expert" is going to have the final word on my body & health, ever again. My body, my choice. I intend to take hormone therapy until the day I die. I simply refuse to go back to that dark place. I want to thank HERS for all the vital work you do. But please don't keep insisting all women do not benefit from hormone therapy.
At October 18, 2011 at 8:22 PM , HERS Foundation said...: Gerry,

What HERS tells women about taking exogenous hormones (those not produced in your body) is that the possible benefit is limited, and therefore small, and the possible risks are unlimited and large.

Having information about the known risks and benefits provides women with what they need to make an informed decision.

If you feel better taking hormones than not, and know the risks, HERS supports your informed decision to do what you feel is right for you.

Thank you for sharing your experience, HERS wishes you continued good health.
At October 29, 2011 at 1:37 PM , millcitygal said...: Re: my leiomyosarcoma (Susan)
Yes, an ultrasound was done. The mass was large, irregular-shaped, & located both inside & outside the uterus. I was told by Dr. Levine that they wouldn't know if it was malignant until after the surgery. The only thing I would've done differently is consult an oncologist or two much earlier!
At October 29, 2011 at 6:49 PM , Mad as Hell said...: Like Gerry, I’ve chosen to take hormones to improve my quality of life. However, I know I’ll never be the happy, vibrant person I was before I was needlessly hysterectomized and castrated. And I’m certainly not happy about having to depend on a system that exploited me. But I was in such a dark place for too long.

It’s bad enough not having my own hormones but even more distressing to me is the loss of pelvic integrity. I now have some intermittent back, hip and rib cage pain and know it will likely get worse as time goes on. And when I sit for long periods, my tailbone hurts and I have what feels like poor circulation pains in my lower hip/upper thigh area. And the loss of my beautiful, intact figure is beyond devastating.
At October 29, 2011 at 8:21 PM , Terri said...: I'm 35 years old. At 32 I had my uterus, right ovary. I kept my cervix for support and i was told to they would not have to shorten my vagina. They used the Da Vinci because I am prone to scar tissue. I have 5 laps done due to pain, heavy bleeding and cyst. I had an ablation done. I had another Lap because I found out I was pregnant and I had the Mirena IUD, Dr. said the IUD went through the Uterus into my abdominal cavity. It didn't, there was no IUD, if fell out. One year later I was in so much pain, the bleeding was horrible. My ovary had become poly cystic looking and they I had a fibroid. My dr. said I should think about having a hysterectomy since I was done with kids. It would stop the pain and no more periods. I agreed on the spot.

My surgery took 6 1/2hrs. Overnight I started hemorrhaging. I couldn't keep anything down, so more needed an x-ray. The worse part was I had a head ache, it hurt so bad I couldn't move, it was the only thing i felt. The headache went right away with a shot of toradol. Turns out you're upside down the whole procedure. No one told me before or after. I left the hospital after 6days.

I started bleeding a couple of days later. I was told it was normal. Two months later I complained I was still bleeding. I was told it was normal. I bled or spotted every single day. A year after the hyst. I was wearing tampons. I went to my doctors, she did her exam and said, "this isn't what I meant" I said i know i got sick of complaining. Had ultrasound and my cervical stump had a grow, and there was scar tissue every where.(i was always told you cannot see it on ultrasound)I was advised to have another surgery. I said no, she said they have to get whatever is on the stump off. A week later I have it done. everything was scar tissue but tube looked suspect so they removed it with 20% of the ovary. The did hollowed out the cervix, upside down cone.

The pain in my groin area that started all of this is still there and guess what I bleed a couple of days at a time at least twice a month. I had lesions on my cervix frozen off.

I don't know what to do. Dr. said its normal to bleed. After each surgery she would say no way i would bleed anymore. Is this normal? I'm sick of standing up and blood gushing out. I'm disgusted with myself for not doing any research. My hormones have been test a few times and come back in normal range.

The insomnia started two months after hyst. 6months later i was seeing a psychiatrist, a little over a year I overdosed on Xanax, I've hospitalized another time. I cannot remember anything, i forget mid-sentence. The bleeding doesn't seem normal. My dr. said she'll do a sort of leep procedure. I said NO. I really feel like this is all in my head. I know the Hysterectomy is the cause. I just need to know is the bleeding normal? Do I find another doctor. Sorry for the rambling if you made it this far. I just need some help. I would appreciate anything.
Thanks,
TH
At October 30, 2011 at 6:17 PM , Mad as Hell said...: Terri,
Wow - you received horrible treatment! It's bad enough that you were another victim of the greedy hysterectomy industry but to have suffered all these complications and mistreatment on top of it is sickening!

It's possible to have bleeding when the cervix is left in place but I doubt "gushing" is normal. Nora will probably respond.

I hope things improve for you soon! Keep us posted.
At November 10, 2011 at 9:32 PM , Rebecca said...: I am so glad to have come across this link. Now i know there are more women like me out there, unfairly robbed of our womanhood. No money in the world can replace my uterus.
I have never had kids, and finally when i decided it was time, I went see a doctor who told me i had fibroids, and the only way i could get pregnant was by removing them surgically.
I scheduled for robotic myomectomy for 05/17/2011, following the doctors advice. The surgery was supposed to take only 2 hrs, but when i woke up, it was 12 hours later, and only to be told i had a hysterectomy and not a myomectomy, apparently, the doctor said my uterus was bleeding a lot and the only way to stop the bleeding was removing it.
I have never been the same since.My life was turn upside down just like that without my consent.I have suffered depression, ulcers and high blood pressure following the psychological trauma. Any hopes of ever having a child at all are gone completely. I tried contacting a lawyers but the few i have talked to said i have no case. In the meantime i have to accept my condition and live with it because the doctor decided so without my consent.
The Doctors have no right, and they need to be stopped.
At November 11, 2011 at 11:40 AM , Mad as Hell said...: Rebecca - I'm SO sorry you were robbed! I can't imagine your pain of not being able to have children! I was hysterectomized and castrated for a benign ovarian cyst at a Mercy hospital but at least I'd had children. Although winning a lawsuit could never make up for the loss, I hope you exhaust all chances of suing before giving up. Yes, these gyns, hospitals and surgery centers DO NEED TO BE STOPPED!

ACOG published a report in February 2000 saying that 76% of hysterectomies don't meet their criteria for the surgery yet the hysterectomy rates have remained fairly stable since then. Where's the outrage?
At November 11, 2011 at 11:47 AM , Mad as Hell said...: Forgot to mention - This Chicago woman won her lawsuit for an unnecessary hysterectomy and the inability to have more children (she already had one child).
http://law.freeadvice.com/malpractice_law/medical_malpractice/illinois-wins-med-mal-lawsuit-for-unnecessary-hysterectomy.htm

If you want to continue pursuing a lawsuit, HERS may be able to give you some tips to use in your search. I suspect you already know the statute of limitations for your state but in some it's only 1 year.

Hope things start improving for you!
At November 18, 2011 at 10:39 PM , Terri said...: Mad as hell, How much bleeding/spotting is normal when you have your cervix? I have some sort of blood, brown,red,pink,orange,gray color discharge 1/3 of the month. A couple days ago i threw up, i thought i peed too. It was blood. four days later and I still have some sort of colored discharge. It doesn't follow a period, spotting, bright red, clots, turning to brown. it starts brown most of the time, turning bright red. Any straining while going number 2 causes bright red blood with me checking to verify where it came from. I'll accept this is all possible, but i can't accepted hearing it from the doctors, i don't trust anything they say.

Thanks for responding,
TH
At November 18, 2011 at 11:27 PM , HERS Foundation said...: Terri, the bleeding after supracervical hysterectomy is usually cyclical, like menstruation, and often occurs during intercourse and straining with a bowel movement. How much bleeding women have from the cervical stump depends upon how much of the cervix remains.

When you have bleeding, do you need more than a panty liner, and how often do you need to change it?

Why was an upside down conization performed? That would weaken the cervix, and may contribute to your bleeding.

Have you contacted HERS? It may be helpful for you to send your records to review with a counselor by phone. Call HERS at 610.667.7757 to arrange a telephone appointment.

You may also find it helpful to watch the video "Female Anatomy" the Functions of the Female Organs" at www.hersfoundation.org/anatomy.
At November 19, 2011 at 9:26 PM , terri said...: Thanks for responding.

After the botched partial. I continued to bleed. After two months i was wearing tampons. 1yr after hyst. i was wearing tampons and pads. i leaked thru in less than two hours. I snapped and went to the doctors. She tried lecturing that it's normal to bleed with an ovary and cervix (assuming i'm a liar or an idiot)As soon as she got to work, she stopped and said Terri this is not what I was talking about when i said normal. I told her i knew that but i got sick of calling and if i died hubby could sue you. She didn't like that. ultrasound showed mass on cervical stump, and ovary covered in scar tissue, and apparently scar tissue just there. I asked how she knew it was scar tissue when she always told me it doesn't show on ultrasounds (heard that a few time followed up by lap if best) I refused the surgery. She said they have to get the mass off the stump and she didn't recommend i wait. 2 days later i had it. Everything was covered in scar tissue, the mass was scar tissue. I had lots of uterine tissue left from the hyst. They took my last tube saying it was suspect. They did the upside down conization to prevent bleeding and should prevent any spotting. The assisting doctor was doing this method on his patients. He supposedly was doing my doctor a favor since i was a difficult case.

In recovery my doctor said she would bet i will never spot. She explained what they did. I was told they left a small piece for bladder support and to keep vagina as is. She said if someone did a pap they wouldn't know what was done. Of course bleeding/spotting never stopped. a year later, this past jan. i went to doctor's office to pick up prescription for what i thought was a yeast infection. Doc surprised me and wanted to do an exam. Of course i was doing more than spotting. She said my cervix was bleeding to the touch and I had several lesions that were bleeding. She said she could put some nitro something, i can't think of the name. I said go a head. i knew that wasn't going to stop the bleeding. I didn't care either. Well my vagina burned for 24hrs. I sat at work cupping my vagina dying. next week check up doctor said she never heard of that burning before. She told me she wanted to do something similar to a LEEP but removed layers of cell from the whole cervix. I said i would call, but I am done being experimented on, especially while implying it's not really normal but there is nothing wrong with you. I'm not going back either. I will get all my records eventually. I really need to know if this bleeding, cramps, increased pain when bleeding is normal. everyone says its not but they don't have a clue. people are worried because of all different changes since the hysterectomy. I had it at 33. i started changing right after. I am a complete different person. It's the mental/emotional change that kills me. Thanks for reading
At November 20, 2011 at 11:33 AM , Gutted said...: Terri - I'm so sorry that you too were a victim of the evil hyst industry!

If you haven't already done so, I hope you file complaints with your state's medical board and your insurance company (if you had medical insurance). You could also pursue a lawsuit.

You may also want to write a review of your doctor on doctor rating websites.
At November 26, 2011 at 11:10 AM , Tina said...: I, too, was very reluctant to have a hysterectomy for my painful and debilitating fibroids. I was bleeding most days of the month and feeling weak and short of breath. I had an endometrial ablation and fibroid resection which helped the bleeding for about three months. After suffering for another year and a half I made an appointment with a different doctor. She did a pap and another endometrial biopsy just to make sure it was ok as I had three other biopsies that were all ok. She called quickly to tell me that I had a uterine sarcoma that is often misdiagnosed as uterine fibroids. I had a total abdominal hysterectomy and will have to take medication to further reduce the remaining estrogen in my body to prevent the cancer from recurring. Hysterectomy saved my life. I struggled for over ten years with heavy and miserable periods. I wish I had a hysterectomy back then. Be careful with your health, make sure that your fibroids are really benign.

(Please post with your name or choose an alias. Anonymous posts will be given an alias.)
At November 26, 2011 at 11:19 AM , HERS Foundation said...: Tina, how unfortunate that a uterine sarcoma was not diagnosed early on. Fibroids appear distinctly different on an ultrasound than any other growth. The radiologist should have known that it was not a fibroid. Fibroids have a whorled pattern, unlike uterine sarcomas.

The endometrial ablation, which scars by burning the inside layer of the uterus, probably delayed the diagnosis of the sarcoma as well.

Were your ultrasounds performed in the doctor's office, in a hospital's radiology department, or in a free standing imaging center?

I'm sorry you didn't receive better treatment. If you had been diagnosed, with an ultrasound, as having a fibroid it could have been removed with a myomectomy, removal of only the fibroid, not the uterus. A myomectomy would have resolved your symptoms, there is no need to suffer with pain and heavy bleeding.

I hope you are doing well, and wish you a speedy recuperation.
At November 26, 2011 at 6:26 PM , Tina said...: I did have fibroids that were removed via hysteroscopic resection. Unfortunately, the doctor who performed the procedure, when looking at the ultrasound images, assumed that the fibroids had grown back. Looking back, I should have had an ultrasound performed at a hospital and read by a radiologist. I thought that I was receiving good quality care as my doctor was recommended by a another doctor who is a friend of mine and also a medical school instructor. After the hysterectomy, the final pathology report indicated that along with the sarcoma there were indeed additional fibroids.
Myomectomy is a wonderful alternative to hysterectomy for benign fibroids. Women should know that the recovery is very similar to hysterectomy and fibroids can and do return. I was terrified of hysterectomy but how I feel now, only a month after the surgery,is far better than the years of suffering I endured. Even with a diagnosis of cancer and anti-estrogen medication, my health is far better than before.
At November 26, 2011 at 10:53 PM , Candy said...: To Hers:
how do I go about getting an annual sonogram of the uterine lining outside of going to a gynecologist?

(Please post with your name or choose an alias. Anonymous posts will be given an alias.)
At November 27, 2011 at 7:43 PM , Kelly said...: I am scheduled for hysterectomy Dec 5 2011for fibroid enlarged uterus heavy bleeding. All 3 drs say my only option but God is telling me otherwise as I believe he led me here. I am not a candidate for hrt due to a history of blood clots so I will be left to suffer without my hormones. Thanks but no thanks. Have pre op Tues and Dr will offer me an alternative to tah or I will muttle through with periods. Monthly pain beats life of misery. Hysterectomy radical decision for this problem which btw I have lived with for 20 years. I am only 44 and would prefer to stay intact. Any feedback would be appreciated
At November 27, 2011 at 9:17 PM , Dawn said...: Kelly,

The vast majority of doctors will tell you this is your only option, so three telling you this does not mean it's true. You are right, if you are only suffering a few days a month, that is much better than having your health destroyed for the rest of your life. There ARE things you can do to reduce the bleeding. I also have large, large fibroids, and have had them for many years. If I: sleep regularly; eat a very healthy diet that has a lot of cruciferous vegetables (read Joel Fuhrmann's "Eat to Live" and give him a call), and exercise a lot - not necessarily terribly vigorously, but lots and lots of walking - my periods are WAY less heavy. Don't assume it's ALL the fibroids. Sometimes the same hormonal imbalance causing the fibroids to grow causes the bleeding. Remove all sugar and salt from your diet. Don't eat much meat - too hormone-laden - or fish - toxin-laden. Take a very good quality fish oil, only 1/4 tsp. per day. Make sure you have a very good quality calcium supplement. Drink fresh kale juice and eat lots of greens and your low iron levels will be helped greatly. (My life-long battle with anemia was eradicated this way.) Anemia also leads to heavier periods. I can predict how heavy my periods will be depending on how I have lived that month. Some days I do have nagging pain all day long. I get asked whether I am pregnant (I am 49.) But mostly my life is normal, and I still have control - I can still exercise, I can still sleep, I can still have a normal marriage, I can still work. I could easily lose all of that if I had a hysterectomy. Look into all you can do. Don't listen to doctors who tell you that you have no control and should not feel "guilty." I am not saying you should feel guilty! But don't let doctors give you a line that you are completely powerless to change your situation without radical surgery. It is not true!! You can at least make it manageable till menopause.
At November 27, 2011 at 9:27 PM , HERS Foundation said...: Kelly,

Good decision to live with the symptoms rather than have your sex organs removed. If, at some point, you feel that you can no longer live with the symptoms, you can have just the fibroids removed, not your uterus.

You never need a hysterectomy for fibroids unless you have the wrong doctor. Go to HERS website at www.hersfoundation.org. Scroll down to the "Fibroids" link. When you finish reading about fibroids, scroll down to the "Myomectomy" link.

Then take 4 minutes to view the trailer of the conference, which is also on HERS Home page. The gynecologist who spoke at the conference, Mitchell Levine, said "You never ever need a hysterectomy for fibroids".
At November 27, 2011 at 9:33 PM , HERS Foundation said...: Candy,

You can ask any doctor, an internist, family doctor or any other doctor to give you a written order for a pelvic and transvaginal ultrasound to evaluate the pelvis. When you have the written order call the best hospital near you and ask for the Radiology Department. Tell them you have a written order for a pelvic and transvaginal ultrasound, and they will make an appointment for you.

After you have the ultrasound, call the office of the doctor who gave you the order. Tell the receptionist that you would like the radiology report emailed, faxed or mailed to you when they receive it.

If you would like to discuss the findings by phone with a counselor at HERS you can email hersfdn@earthlink.net, fax 610.667.8096 or mail HERS Foundation 422 Bryn Mawr Ave, Bala Cynwyd, PA 19004 the report, then call 610.667.7757 and let Jennifer know that you sent your records and she will schedule time for you to review your report with a counselor by phone.
At November 28, 2011 at 12:01 AM , Candy said...: Hers:
Do you think it is necessary to have your ovaries checked each year by a gyn?
Candy
At November 28, 2011 at 12:03 AM , HERS Foundation said...: A woman's gonads are her ovaries, a man's gonads are his testicles. Can you imagine a man going to a doctor every year to have his testicles "checked" every year to see if there's anything wrong with them yet?

The incidence of ovarian cancer and testicular cancer are nearly the same.
At November 28, 2011 at 7:44 PM , Anonymous said...: One final question,
Do you think it's necessary to have a breast exam each year by a gyn?
Candy
At November 28, 2011 at 8:04 PM , HERS Foundation said...: It's a personal decision. I have not crossed a doctor's office threshold in 28 years. I have never had a mammogram. What you decide is what is right for you.
At November 29, 2011 at 11:23 AM , Skeptical said...: These gyns and other hysterectomy perpetrators and enablers (hospitals, nurses, insurance companies) have not only destroyed our lives but put us between a “rock and a hard place.” Our health is now worse than ever yet we’ve lost all trust in a medical system that was supposed to act in the best interests of our health.
At November 29, 2011 at 11:45 AM , Dawn said...: What if we started barraging our local newspapers, radios, and television stations with our stories and complaints? Would journalists be willing to bring this into public light? If women started reading about this in the newspaper, would more come out and tell their stories? Is the media so beholden to the medical industrial complex that they will ignore this, or could something be started here? My own MD has provided his patients with a link to articles that clearly link mammograms as possibly increasing cancer rates. If we write to our media and include some hard statistics, based on science, not on marketing, perhaps some would start to take interest. Perhaps we need to revive the picketing that was done a few years ago, and "occupy" some big chemical plants as well as big corporate hospitals.
At November 29, 2011 at 8:42 PM , Sh-t Disturber said...: Dawn,
I agree that we need to do all we can! I've been doing just that for years and am getting discouraged. Legislators don't even want to take it on. Someone posted here that a legislator told her that legislation would put too many gynecologists out of business. Unbelievable! The legislators I've written won't respond despite me citing statistics for my state - 42% of women have had a hysterectomy and 36% have had at least one ovary removed. I pointed out that many of these women are probably now on disability only adding to the state's current economic woes. One legislator was gung-ho on pursuing this and then backed off.

I've also written media and posted ads as well as some other activities. I spend a lot of time on a couple of forums but, unfortunately, I'm about the only one on these forums trying to get the facts out along with my experience. And many of these women (mostly ones who're intact and considering hysterectomy) accuse me of not being supportive. But none of these setbacks will stop me from speaking out. I wish more women would join us. There are too many that don't want to get involved and also many who're just trying to get through each day and have no energy or motivation for anything else. And then there are probably those who're still in the dark believing that they really needed their organ(s) removed!

I now know that the insurance companies' clients are the hospitals and doctors, not the insured individual. And if they ALL don't change their reimbursement rates and policies to favor organ-sparing treatments then it's doubtful any of them will. At least Cigna can't say they don't know about the harm caused by hysterectomy and castration. I sent the head of clinical policy a lengthy document of medical studies as well as a link to the female anatomy video.
At November 29, 2011 at 9:47 PM , HERS Foundation said...: We have made huge inroads...turning the tide from women being routinely coerced, bullied or mislead into hysterectomy to a growing number of women saying "No! Hell No", I read HER blog, I'm not going to let you remove my uterus or ovaries.

This is a sea change, one that you, every woman who, like you, speaks out are responsible for. Women read what you post on HERS blog, on comments about articles, on other websites. YOU are the alarm they hear that makes them say NO, you will not take my sex organs.

Her is doubling our efforts, and you must double yours. It is not only a time not to be discouraged, it is a time to recognize what we have accomplished. Not only HERS but, every single woman, like you, who has led the way, refusing to accept what was done to you, telling the truth about the reality of life after hysterectomy and castration.

Double your efforts. We are doing it! This IS being stopped. Keep your voice loud, strong and ever present.
At November 30, 2011 at 12:03 AM , Mad as Hell said...: If only -

- my guard had been up (never had menstrual problems - just one day of constant pain which led me to see my gyn who rushed me into surgery)
- I'd realized that gyn residents would be assisting and they must meet certain surgical requirements to graduate
- I'd gotten a "real" second opinion versus going to the oncologist recommended by my gyn for a consultation
- I'd listened to my intuition

MAYBE I would still be intact.
At December 13, 2011 at 8:40 AM , Vicky said...: FYI: I have added a link to your blog on my blog/website. Blogs I Read & Recommend.
Please email me a description if you have particular endorsement wording you would like to follow the link.
Thanks, Vicky
At December 20, 2011 at 7:43 AM , Couldn't be Happier said...: On Aug. 2006 my doctor recommended hysterectomy to remove ny huge fibroids. At the very last minute of the surgery I backed off, dispite the peer pressure and the fear factor (your fibroids will get cancerous and stuff like that).
It's been five years, and not having the surgery is the best decision I have had in my life!

I still look like a four month pregnant woman, I am 50 years old, but I feel like a million bucks!
At December 20, 2011 at 10:36 PM , Mad as Hell said...: Yay - a success story! I'm SO glad you cancelled and I hope you live the rest of your life intact! Please spread the word about the harm of hysterectomy. Thanks for posting!
At December 24, 2011 at 8:19 AM , Elaine said...: I'm one of the unfortunates that had a total hysterectomy and removal of both ovaries for endometriosis in August 2005. I was 33 years old. I posted here for a while because it was such a traumatic experience for me, especially surgical menopause (even with hrt). I lost my whole identity and became ill with anorexia nervosa for a long time. Back in 2006 before my eating disorder but one year after my hysterectomy and despite being on hrt, I had a dexa scan that showed a score of -3.2 in spine and -1.8 in hip. I refused to take the bisphosphonates (fosomax...) due to horrid side effects and negative long term studies. I started a weight training program, changed to a whole foods diet, took more calcium and vitamin D. Even when i was very ill with my disorder I was on the Vivelle Dot patch (FDA approved to prevent osteoporosis so they say) and taking lots of calcium and D. I have been in recovery for over a year and am also a vegan since February who is extremely health conscious and ethical about my choices in living. I eat 2 cups of leafy greens each day, very little processed food, very little flour, make sure to keep up my protein intake (beans, nuts/seeds, high protein grains, etc), and I still supplement with calcium, magnesium, vitamin D (have used both ergocalciferol and cholecalciferol), and am still on a strong dose of estradiol and compounded testosterone. I run 3 miles a day, lift weights, hike, do yoga, etc. None of this has mattered. Recently I fractured a middle rib just from coughing. I had to stop running because I have a stress fracture in my lower spine. And I have a hairline stress fracture in my upper jaw making it difficult to eat apples or other hard foods let alone yawn. I can not breath, lay down, sit, walk, open a door without pain. I am 39 years old and I should be in the prime of my life, not crippled with pain keeping me from enjoying it. I have done everything in my power to help myself to no avail. My osteoporosis is still getting worse. Hormone replacement wont protect you, nor will diet or exercise, when you have important endocrine organs that are vital for bone strength and processing removed. There is not one osteoporosis drug on the market that is not controversial or that hasnt proved to have long term disadvantages ranging from cancer to worse or deforemed bones. Once your ovaries are removed or stop functioning or slow down due to removal of the uterus, no matter how old or young you are, you can not expect to build more bone. What you have will diminish at a faster rate. This is not a scare tactic, this is fact and it needs to be talked about. Far more people are disabled or killed by osteoporosis than ovarian cancer. It zaps quality of life and is terribly disabling. I am writing this early on a Saturday morning, unable to sleep due to the pain. I wonder how much longer before my hips are next. I store more fat there (to absorb vitamins etc) so that bone thinning has been a slower process but much quicker than if I had ovarian and uterine hormones to help remodel my bones. Fat is not a bad thing either as doctors and the media will have you believe. you store hormones there that will help absorb hormone replacement and important minerals and vitamins as well as weigh the bones down and protect them. But as I said even that wont stop the bone loss. Obese women who are castrated also suffer from osteoporosis. I know someone personally with this situation.
cont...
At December 24, 2011 at 8:20 AM , Elaine said...: cont.
I may have had a low bone density before I had my hysterectomy but this is all the more reason I should have had a dexa scan BEFORE allowing it to be done to me. All women should get a baseline bone density score who are considering a hysterectomy. Please consider this risk and research just how common osteoporosis is and how devastating. It appalls me that so little literature on osteoporosis acknowledges ovary removal and hysterectomy as huge risk factors (although some do including Mayo clinic) and that these women account for a majority of the numbers of women with osteoporosis. As a medical records technician I see a lot of health information on patients and I have seen first hand how many women with osteoporosis have had a hysterectomy and/or ovaries removed mentioned in their medical histories. I am working toward a degree in heatlh information management and a dream of mine is to research and uncover statistical information about the effects of hysterectomy using the electronic medical record database. all the facts are there hidden away.
Its very encouraging to see women fighting back here! So many are brainwashed to hate their reproductive organs and want them out, to think bleeding is nothing more than a nuisance and that the ovaries and uterus, cervix, fallopian tubes are good only for producing babies. It is a difficult battle because not only do doctors give us few other options but a lot of women want their reproductive organs out and hate that part of themselves or want a quick "fix" for their pain so of course they support the hysterectomy industry. It is like a freaking right of passage. Men on the otherhand prize their sexual endocrine organs and will fight to the death to keep them even with advanced prostate cancer (I analyze a ton of cancer patient charts so again speaking from the front lines here). I wish more people, men and women, would take a look not only at their own health but how the way we live in a highly industrialized society and how what we eat and how we treat our environment and each other impacts our endocrine organs and the diseases we face (fibroids, endometriosis etc). Not all of our problems are genetic. Digoxins found in the environment have been shown to contribute to endometriosis, and endocrine disruptors found in the great lakes are affecting birds, fish, and frogs who are having the same reproductive and thyroid issues as humans. We need to also take a look at the destructive cultural norms and beliefs prevalent in our society (as in others) and question them, not passively allow them to be spoon fed to us when it is destroying us as a people. Someday what may seem radical and way out there now (as a lot of people seem to view HERS) will be a normal fact in years to come. Change is happening and more people are standing up in many ways to the industry, like it or not. This thread is a good example!
At December 28, 2011 at 10:53 AM , TQ said...: Elaine,
Thank you for the in-depth explanation of your personal situation as well as the view from the front lines. I have often wondered about the fact, as I saw health practitioners and in completing new patient forms, why there is no question for hysterectomy date. But the medical community isn't setup to track such things once a practice has been put in place and while one might think this would be an avenue for getting a more accurate picture of the consequences of hysterectomy, its clear to me that a lot of forethought goes into how ones condition is interpreted and then documented by doctors, aside from the fact that effects are either blamed on a fictional surgical menopausal state, unintended operative damage, not retaining ovaries/cervix, and lastly the character flaws, bad luck, bad doctor of any woman. In the end anything other than the innate consequences of uterine removal/amputation in and of itself.
At December 28, 2011 at 7:49 PM , Elaine said...: I need to correct something in my previous post. I meant dioxins not digoxins when I was talking about environmental disruptors of hormone and reproductive systems.

TQ
Thanks for your feedback! You do make a good point. I would think that even just getting an accurate count of how many hysterectomies and ovary removals are performed over a given period of time would be an eye opener to the public(which the electronic health record would allow an accurate count of if information regarding a patient's surgical history such as hysterectomy and/or ovary removal is included). It would go beyond "estimates" that can be minimized or brushed off currently. However, I suspect there would still be a lot of apathy or indifference or justification. Sigh.
At December 29, 2011 at 12:04 AM , Mad as Hell said...: I read that osteoporosis after hysterectomy can occur in as little as 6 weeks! Women also fail to understand and/or acknowledge the link between hysterectomy and chronic back, hip, and rib cage pain caused by the loss of pelvic integrity. And it doesn’t make for an attractive figure either! Many women with chronic pelvic pain are desperate to end their pain and have no clue that they’ll be trading pelvic pain for the chronic, progressive pain caused by the assault on their skeletal structure.
At December 29, 2011 at 12:16 PM , TQ said...: Elaine,
You definitey brought up an interesting point, one would think that the sheer massive volume of the operations (even in approx.) done annually would make people sit up and take notice?? I defintely support whatever information you can document via actual records.
At December 29, 2011 at 2:51 PM , Mad as Hell said...: Yes, the sheer number of hysts along with ACOG's study showing that 76% of hysts don't meet their criteria should be cause for public outcry. But we live in a very self-centered and greedy society and no one wants to "stick their neck out." Someone posted here that a legislator told her that he/she didn't want to put gynecologists out of business! Yet the unnecessary heart bypasses at Redding Medical Center and the unnecessary stent surgeries on the east coast were big news and the subject of many lawsuits.

Women's desire for a quick fix coupled with the insurance companies' willingness to authorize hysterectomy and castration with little to no justification doesn't help matters.

I have a nurse friend whose job is in the area of quality so she reviews hospital patient charts all day. She said that 90% of female patients with chronic illnesses (e.g., heart disease, hypertension, diabetes) have had a hysterectomy and/or castration.
At January 3, 2012 at 12:46 AM , Stevvie said...: I'm 51 and suffered tremendously for years from heavy to massive hemmorage level bleeding, bloating, back pain, incontinence from time to time and overall fatigue due to fibroids - 9 total, large (8+ CM) and medium sized. I refused to get a hysterectomy or a myomectomy. I quit my former GYN because he wanted to immediately proceed to myomectomy with my permission to initiate a hysterectomy if he could not stitch me back together well enough or fast enough due to heavy blood loss. WHAT? I told him this would never be an option for me - after 13 years of being his patient, I left his practice.

I changed my diet to 100% organic, no sugar, fat, dairy, processed foods or red meat. Heavy vegetables, grains etc. It helped alot. But, tough to sustain year over year. I researched Interventional Radiologists and UFE / UAE procedures, check here: http://www.radiologyinfo.org/en/info.cfm?pg=ufe

Understand that this is a revenue issue for GYNs. They will not get paid the big fees if they refer candidates to Interventional Radiologists for uterus sparing, less invasive procedures that "permanently" remedy fibroid problems. Most gyns want to do multiple surgeries knowing the fibroids will grow back and most times the GYN will not get all of the fibroids during surgery because some are just too small or time is working against them so they go for removal of the largest, most troublesome ones at the moment. In a couple of years or less, you will be back asking them for another surgery or hysterectomy - big pay days for them! They know the small fibroids will soon grow to the same size as the ones you had prior to the surgery.

I found a new female GYN and a also a great IR at Cornell Weill Vascular in NY, Dr. Marc Schiffman - I recently completed my UFE in December 2011. Immediate and amazing relief less than 3 weeks post procedure. Ladies, if you are a good candidate for this procedure, don't hesitate, save your uterus and female parts! They come in handy for more that just childbearing. Don't let these doctors castrate you, please.....
At January 3, 2012 at 1:11 AM , Stevvie said...: I'm 51 and suffered tremendously for years from heavy to massive hemmorage level bleeding, bloating, back pain, incontinence from time to time and overall fatigue due to fibroids - 9 total, large (8+ CM) and medium sized. I refused to get a hysterectomy or a myomectomy. I quit my former GYN because he wanted to immediately proceed to myomectomy with my permission to initiate a hysterectomy if he could not stitch me back together well enough or fast enough due to heavy blood loss. WHAT? I told him this would never be an option for me - after 13 years of being his patient, I left his practice.

I changed my diet to 100% organic, no sugar, fat, dairy, processed foods or red meat. Heavy vegetables, grains etc. It helped alot. But, tough to sustain year over year. I researched Interventional Radiologists and UFE / UAE procedures.

Understand that this is a revenue issue for GYNs. They will not get paid the big fees if they refer candidates to Interventional Radiologists for uterus sparing, less invasive procedures that "permanently" remedy fibroid problems. Most gyns want to do multiple surgeries knowing the fibroids will grow back and most times the GYN will not get all of the fibroids during surgery because some are just too small or time is working against them so they go for removal of the largest, most troublesome ones at the moment. In a couple of years or less, you will be back asking them for another surgery or hysterectomy - big pay days for them! They know the small fibroids will soon grow to the same size as the ones you had prior to the surgery.

I found a new female GYN and a also a great IR at Cornell Weill Vascular in NY, Dr. Marc Schiffman - I recently completed my UFE in December 2011. Immediate and amazing relief less than 3 weeks post procedure. Ladies, if you are a good candidate for this procedure, don't hesitate, save your uterus and female parts! They come in handy for more that just childbearing. Don't let these doctors castrate you, please.....
At January 7, 2012 at 8:52 AM , Elaine said...: Stevvie,

While I commend you for taking an alternative approach and avoiding an unnecessary hysterectomy, I wouldnt dismiss a whole foods, organic healthy lifestyle as hard to maintain. I have been doing it for some time now and I live on a limited budget being in college and working. I still find time to cook and prepare raw vegan food daily and to exercise. I only wish I would have tried this approach years ago before my hysterectomy but I was brainwashed to believe you cant change or improve health by diet alone. Surgery and drugs always seem to be the answer in our society. Always the quick fix but is it really? Complications do occur, and terrible side effects. You may have to have repeated surgeries in the future. And we all know the horrible effects of hysterectomy and ovary removal. I believe diet plays a huge role in so many preventable diseases, including reproductive ones. Mind, body, spirit, lifestyle should all be assessed and worked on, not just the physical problem. Girls are having periods and reaching puberty at younger and younger ages paralleling the rise in childhood obesity and a highly processed convenient diet in a fast paced society. Please do not dismiss this aspect of long term personal responsibility and treatment. We arent slaves to our genetics alone and we dont have to be slaves to a surgery drug happy culture.
At January 7, 2012 at 9:45 AM , Dawn said...: I agree with Stevvie. The American SAD diet is playing havoc with our hormones. When I stick to a nutritarian diet (hardly any animal projects, about 70% raw and cooked vegetables, 10% grains, 10% nuts, seeds, avocados, no refined grains or oils) my periods are much, much lighter - despite my huge fibroids - and PMS is nearly non-existent. I am 50, and decided at the age of 38 not to have a hysterectomy. I used to hemorrhage to the point that I would feel dizzy. No more. My iron levels have returned to normal, after years of anemia, without any iron supplements - which can also be dangerous -and without meat. Maybe every woman won't react this way, but there are so many other reasons to radically avoid the typical American diet that everyone should do it anyway. Living healthily can seem unsustainable when all your friends and family are pulling you down by saying, "This is quackery...you are so extreme...that must taste awful..." etc., etc. They are either not sick enough to change or they are so addicted to the things that harm them that to justify their choices they ridicule yours. One must be selfish. I am the one who has to live with my body, not my friends or family. And I don't want to become a burden to them by becoming ill and disabled. We also have to face our own addictions and not blame others for our lack of discipline.I keep the goal in sight by constantly reading the research on diet and health and not letting the big corporate food organizations dictate what I believe is "healthy." Eventually, good habits will replace the bad ones and you will feel the difference. My doctor has also organized a support community that is amazing and has been health and life-saving. Even if I can't live or work with nutrition-aware individuals, I can contact on-line friends any time for support. My phsysician also makes available to all his patients a wealth of scientific peer-reviewed journal articles on nutrition and drugs.One thing I must point out is that it is often not enough to just change your diet a little. For many of us, in order for real change to occur, we cannot afford any unhealthy choices at all. Is it worth it to me to give up pizza, cheese and ice cream so that I don't have to have a hysterectomy? Yes, yes, and yes!
At January 8, 2012 at 12:10 AM , TQ said...: Please be sure to review the information prior to a UAE at:
http://uterinearteryembolization.org/

As Elaine and Dawn have mentioned, diet is important for reproductive health. The problem is all the supposed "correct" information on what is a healthy diet. Please read and research, and then research some more. A diet that produces a light menstral flow may not necessarily be an indication of the proper path anymore than a lack of flow from vigorious exercise. Or a low total cholesterol (below 140), also may not necessarily be a positive indicator, anymore than a higher total cholestrol (within optimal level) because of a poor ratio.

But all thoughts agree the standard american diet is less than optimum and we should err on the side of more whole and unprocessed foods.
At January 13, 2012 at 11:58 AM , Ghada said...: The science of the silly woman-in-the-street

(that’s me by the way)

The business of attempting to map a nerve from the g-spot to the brain via the uterus (in order to accommodate the theory that women climax in their uterus which could explain why infants rock their heads to dance) has taken me to weird and wonderful places.

Ignorance sometimes can be fantastic, because it makes each new scientific discovery a marvel! (I don’t mean original discovery by myself, rather the discovery of what the original discoverers had discovered).

I think I found the first scientific evidence that may support orgasmic wombs. You need to follow my train of thought, though, this is a rather tough assignment:

Evidence 1: Kangaroos rock, right? Guess the reason why …

Observe how of all the two-legged animals, no one has the power of a marsupial’s rock: I mean, the jump on those guys! Marsupials (that is kangaroos et. pals) have two uteruses, each uterus has its own vagina and both of those two vaginas have their own dedicated vagina (a 3rd one!) this 3rd one in the middle is used for birth. Are you following? More uteruses ergo more rocking ergo it must be the orgasmic functionality that a kangaroo foetus feels that gives it its first early rocking practice – it is the power of a g-spot multiplied by 3: QED – let me rephrase that in clearer terms:
It is the power of the spot-G, multiplied by 3: Que eeee Deeee

So what’s that got to do with rocking human babies? I hear you ask: women, too, have more than one uterus, but only when they are foetus. Eventually the uteruses fuse completely and they look like one uterus (to the untrained eye, I reckon). Are you still with me on that rocking theory? Foetus – two uterus – orgasm (lead to) – kangaroo baby rocks – human baby rocks! I lost my train of thought, but I’m sure you got the idea (if not read and read again until you get there)
PS: not that it matters much, but the tidbit about two wombs and three vaginas and the lost womb came from this wikid place I call http://en.wikipedia.org/wiki/Uterus

Let us hear from you double-uterussed women out there, especially those in hard rock bands or their groupies.

Evidence 2: coming soon to a blog near you
At January 15, 2012 at 7:52 AM , Dawn said...: Doesn't focused ultrasound for fibroids also have some major risks, as well as UAE?
At January 15, 2012 at 10:55 AM , HERS Foundation said...: Dawn, thank you for your comment. Focused ultrasound, if successful, leaves a fibroid in the uterus that may become necrotic, and possibly causing infection and pain. Any of the "alternatives" to hysterectomy that are destructive, such as focused ultrasound, uterine artery embolization and endometrial ablation may be trading one set of known problems for other that might be far worse, and cannot be undone.
At January 15, 2012 at 3:35 PM , TahrirSquare said...: Hello! I am getting a bit too excited here. I seem to be getting the impression you are saying the folowing: there is a treatment (or treatments) that is 100% safe, with 100% side-effect free, and 100% recovery (or at least no subsequent pain).

I'm sorry - I'm all for the cause of women against the knife, but attacking every other alternative remedy that does not involve a knife, is not a suggestion for an effective solution per se ... please do correct me if I'm wrong.
At January 15, 2012 at 3:36 PM , TahrirSquare said...: sorry .. posted comments 3 times, and Google or something else interfered. Let's try another day, okay?
At January 15, 2012 at 4:00 PM , TQ said...: TahrirSquare,
I think the foundation has been repeatedly and consistently clear that they are for women being 100% informed - no matter the treatment.
At January 15, 2012 at 4:38 PM , HERS Foundation said...: TahrirSquare,

As TQ said, it is imperative that women are fully informed about all treatment so that they can make a decision about treatment that they feel will be right for them.

There is no drug or surgery that is 100% safe and effective. Some are safer than others, some are constructive while others are destructive. For example, it is destructive to stop heavy menstrual bleeding by scarring the endometrium by burning, the inside layer of the uterus. It is constructive to shell out small submucosal fibroids hysteroscopically, or remove fibroids in other locations by myomectomy, and leave the uterus intact and functional.
At January 21, 2012 at 5:56 PM , Jenny said...: I am 33 years old. I just had a hysterectomy due to endo,fibroid. I had 3 surgeries in a year. My doctor tried his best to prevent a hysterectomy. In the end I had one due to the severe pain. I am still in the recovery process but I agree this is the best choice I made. I can not live with the severe pain every day of my life. I think finding the right doctor and exhausting all other options was the key. I do not regret having it done. Sure I miss my hormones, but not my parts that caused the most evil pain almost every day for years. I have faith in my doctor he will balance me out. Research your options but don't let others make the choice for you. I believe I will have a healthier stronger life after this surgery. I am 6 weeks post op and can finally see my future, not dread pain every day of my life.
At January 23, 2012 at 10:41 PM , Emily said...: Jenny, Jenny, Jenny,
You naive girl... just give it a few months... and then wait a little more for the health problems you will have down the road...don't worry, they will come... but you will not connect them to your hysterectomy. I am sorry you were deceived by a very bad doctor. You probably are not even a ligitimate woman that just had a hysterctomy... you are probably a byn or pharmaceutical rep that doesn't like the truth coming out about what gyn's are dong to women and the impacts to their greed and profits.

Emily.
At January 23, 2012 at 10:43 PM , Linda said...: I wanted to ask Jenny what "all other options" included. I would bet anything they did not include radical diet changes, including substituting all processed and animal fat for nuts, avocados, and DHA or fish oil supplementation; strict avoidance of animal protein, sugar, and refined grains; and large intake of leafy green and cruficerous vegetables and beans. I bet they did not send you to a specialist to test your fatty acid balance. I bet they didn't check whether you were deficient in calcium or magnesium. I bet they never asked you to try avoiding wheat, which can be very inflammatory in some people.
I bet they also did not suggest lots of exercise - lots of walking or eliptical trainer or x-country skiing, and weight lifting. Results from such changes will not happen overnight, but they will in weeks or months. I don't know anyone who has tried these things who has not experienced some relief.
What about acupuncture? Was that mentioned? I got a lot of temporary relief from acupuncture. And when I developed some kind of strange and long-lasting infection - fever, spotting, and horrible pain where one of the fibroids is located - I was very frightened. My last recourse before resigning myself to the emergency room was to try an energy healer who also did foot acupressure. This was really a last resort because I believed this was complete quackery. By the end of the 90 minute session, the pain had vanished, and it did not recur. The fever also disappeared. It was nothing short of miraculous, and this was not placebo effect. It cost me a grand total of $60. What would have happened, had I gone to the Dr? Tests, hospitalization, and being told that the pain was caused by my fibroids or cancer and that I needed a hysterectomy immediately. I had heard it all before. It makes me sick that women with endometriosis and fibroids are always told that there are "no other options" when none of the above options - some for symptoms, some that actually change the condition - have every been mentioned. Two women who I am close to have had hysterectomies and say they feel great, that this caused them no problems. But those two women have also had heart disease and other cancers since the surgery. So how great are they, really?
I am happily approaching menopause - my 50th birthday is approaching, my periods are further apart, not so heavy anymore, and the fibroids are big but are not growing at all - I sense that they are getting smaller. I am so grateful to my naturopath, nutrition-oriented MD's, acupuncturist, and energy healer for getting me through the tough years, and above all to one of my high school teachers, whose open battle with traditional medicine when he had cancer gave me courage to ask questions from a young age. I wish Jenny the very best and I hope that she is one of the few exceptions who comes out of this unscathed and not suicidal, like a friend of mine who was told she had to have a hysterectomy at age 30 for endometriosis. And if Jenny does begin to experience negative after-effects, I hope she will have the courage and strength to gather all the research and support she can and sue her doctors for withholding information she should have had.
At January 29, 2012 at 7:22 PM , sally said...: thanks for the insight, I am struggling with the same, had a mirena with minimal success over a year ago, and was wondering if the hysterectomy would be the best choice, but now I am better informed I will never consider that a preference over the inconvenience and discomfort.
will love my uturus for better or worse and value its service to my whole body.
Thanks so much for the education
sally
At February 1, 2012 at 9:47 AM , Melissa said...: I am a 65 year old woman who has a 4 cm fibroid. My doctor did three ultrasounds and said that the fibroid is growing. I had a blood test that said I was 95% sure that I did not have cancer. My symptoms was slight pressure in my lower pelvic area. My doctor said I need a complete abdominal hysterectomy. I would like to know if any woman my age has had this done. Also I keep thinking there has got to be another way to address this fibroid.
At February 1, 2012 at 9:38 PM , Maria said...: Melissa,
You never need a hysterectomy for a fibroid. What city do you live in? I would highly recommend you getting to a qualified doctor - not just to any doctor - you need one that is not out for greed of money by doing an unnecessary hysterectomy. Have you called Nora Coffey for a consultation and referral?

Maria
At February 7, 2012 at 9:43 AM , Mary said...: Melissa,
There is NO SUCH THING as the statement, "the doctor was 95% sure that I did not have cancer". It just does not work that way. You are definitely being lied to. Blood work does NOT work that way.

Mary
At February 7, 2012 at 10:03 AM , Dixiemom said...: Thank you so, so much for your information!!! I am a 46 year old mother of 3 who just recently found out I have submucosal fibroids - after almost bleeding to death and having an emergency blood transfusion. Thankfully, I have found a doctor who is not a proponent of the hysterectomy as a female "cure all." However, my friends and family have all been telling me how crazy I am to want to "save" my uterus and ovaries. They have all said that since I have 3 kids and don't want more children in the future, a hysterectomy would be the quickest and easiest solution to my problem. I had actually started to wonder if they were right until I found your website. The information on here has reinforced my original gut feelings that I should not undergo a hysterectomy - or even removal of my uterus. I felt like if our reproductive organs were useless to our bodies after a certain age, then God would have designed us to "shed" them naturally! Now, I know I was right and I can't wait to show my female friends and family this website and videos!!! Thank you, thank you and thank you again!!! Also thanks to the ladies who've left comments and great advice on here, too!!
At February 9, 2012 at 7:39 PM , Mad as Hell said...: Dixiemom,
I'm so glad you listened to your gut and ignored the urgings of other women. Post-hysterectomy life is hell!

I'm curious to know how many of those friends and family members who said you were crazy for wanting to keep your organs have had a hysterectomy themselves. I'm sickened by the number of hyst'd women who encourage others to undergo hysterectomy. And I'm puzzled how so many women fail to connect their declining health with having had one.

Please spread the word about the hysterectomy hoax!
At February 24, 2012 at 4:18 PM , Renée said...: I am 48 and I have been fighting to keep my female organs for over 14years. I knew before reading anything on the internet that the doctor's suggestion to a 34 year old woman without any kids to have a hysterectomy was wrong. I have seen countless doctors seeking help for the fibroids, their recommendation, “Hysterectomy”. Two years ago I finally ended up with a female doctor who is very supportive of my decision not to have a hysterectomy, although on my last pap she became very frustrated that she was having trouble reaching my cervix. She said the fibroids, had things moved around. On my last visit my doctor told me I was premenopausal. at that time I was having a period every 3 months. Then after the stress from moving and a very bad diet (meat, grease, sugar, flour, things I don’t usually eat) I had two heavy cycles back to back, the first one was so bad that my husband asked me if I needed to go to the hospital. Since then I have not had a cycle in 4 months going on 5. I know how close my emotions are tied to the fibroids, when my stress level rises, I will have some spotting and the pain that goes along with your cycle. Some days I waver back and forth just wanting it to be over, wanting my body to be healed and like it was before the fibroids. I exercise twice a day, 4:30 in the morning on the treadmill for 40 min, and floor exercise and 6:00 after work on the elliptical machine. I have never had a weight problem, tall thin and very attractive. I have been asked on two occasion when is my baby due! What? I brushed it off, and just dismissed the comment, keeping my eyes on the prize. (My uterus) I have been trying to get to the root of the problem as to the reason for the growth. I am outraged by the lack of concern from the medical profession, regarding a cure. I am not interested in their quick fix. I desire a real cure. I remain in prayer always thanking God in advance for healing my body, because I know the same way it appeared, with God, it can and will disappear!
At February 24, 2012 at 7:02 PM , HERS Foundation said...: Yay for Renee! I loved it when you said "I brushed it off, and just dismissed the comment, keeping my eyes on the prize. (My uterus)".

You couldn't be more right, your uterus is the GOLD.

It is natural for fibroids to grow until you reach menopause. They will have a rapid growth spurt right before you go through menopause, then they will slowly and gradually shrink to a negligible size after menstruation stops.

You can read the details on HERS website of how and when fibroids grow. Go to www.hersfoundation.org and scroll down to the "Fibroids" link.

If you need more information contact HERS at 610.667.7757 or click on "Contact" on the website.

You are doing all the right things, keep up the good work!
At February 24, 2012 at 11:35 PM , Gutted said...: I'm so glad you persevered, Renee! Ironically, I know of women who were asked when their baby was due AFTER they had a hyst. The anatomical / skeletal changes from hysterectomy cause a big belly. In some women it looks like a pregnant belly while in others, it's a shortened, thickened midsection with rolls of "fat." Not attractive not to mention the resulting back and hip pain.

And sadly, so many intact women who're told they need or should have a hysterectomy say that HERS uses scare tactics. So instead, they trust their doctor and submit to a hyst
At February 29, 2012 at 11:54 PM , Anonymous said...: Nora,
What do you think about doing nothing if one gets ovarian cancer? I have never had children and have gone through menopause - I read my chances are higher from not ever having children.

Tara
At March 14, 2012 at 9:52 PM , Meg A. said...: Tomorrow is my 50th birthday and to honor it I am sending the following letter and "The H Word" to my doctor [posting in two posts to accommodate length]:

Dear Dr. Wright:

Today I am celebrating my 50th birthday. I am marking the day by sending you this book to give you important information I think will be useful to you, and by making a donation to the HERS (Hysterectomy Educational Resources and Services) Foundation. I am grateful to be here today with my female organs intact living a happy, healthy, vibrant life. It was almost not the case…

I came to see you 8 months ago on July 21st, after it was discovered in May at my routine annual gynecological check-up that I had a fibroid. Aside from a little pressure several days a month, I had no symptoms - no pain, no irregular bleeding - and no idea the fibroid was even there. I was a healthy and fit woman in great shape.

After an ultrasound and MRI revealed a 19X14 centimeter pendunculated fibroid and because there was some heterogeneous areas, I was referred to you. Even though research told me that fibroids are almost always benign and that it was highly unlikely a sarcoma had developed or would, you told me that I needed to have the fibroid removed because there might be an aggressive sarcoma (you said it was unlikely, but that there was about a 15% chance – I now know that your odds were, at best, loose guesswork) and then, as you were talking about the surgery that needed to take place, I began to realize that you were not just talking about a myomectomy, but actually a hysterectomy! I was shocked! When I asked why that would be necessary, you told me that there was no way of knowing if I might have cancer in my uterus or ovaries (despite the fact that they looked perfectly healthy on my films) and the only way to be sure was to take them out. You told me that I shouldn’t delay and should have the surgery the day after I returned from my 25th anniversary trip to Hawaii the next week. When my husband asked what effects the hysterectomy might have, you replied, “Really none. She may have some incontinence.” And, then you casually added, “I take it you’ve had all the children you’re going to have. You don’t need your uterus.”

Fortunately, I was so shocked by your cavalier attitude about having my sexual organs removed that I sought more information and called Nora Coffey at the HERS Foundation. Thank goodness! She told me that she hears a story like mine several times a day and that, after looking at my films, she couldn’t understand why there would be any reason for a hysterectomy and that, in fact, I could choose not to have a myomectomy either, as there were no signs pointing to a sarcoma. With a connection through a member of the Board of Trustees, I was able to have a top radiologist at another major NYC hospital look at my films. I didn’t tell him that the “C” word had been used, I just asked him to review my MRI, and when he looked at the films with me he pointed to the heterogeneous area and said, “this is a normal looking degenerating area of the fibroid” without expressing any concern at all!

continued...
At March 14, 2012 at 9:52 PM , Meg A. said...: continued...

So, I was convinced that nothing was wrong with me although I had been led to believe that I had a problem. As you know, fibroids are extremely common and normal in women my age, and generally shrink after menopause. I chose to take an option that you didn’t give me – I chose to do nothing but monitor the fibroid. (Images several months later looked basically the same and, nearly eight months later I still feel fabulous — clearly I did not have “an aggressive sarcoma. “) I can say that, other than marrying my husband, I have never been so happy about a decision (and if marrying my husband had been a bad decision, at least it was something I could possibly undo – a hysterectomy can never be undone). To think that I might have lost the organs that make me a vibrant, healthy, sexually alive woman makes me quite angry, because I now know that hundreds of thousands of women each year undergo this operation unnecessarily without being given information as to the consequences —and I almost was one of them!

I felt I had been bullied by scare tactics and not offered all the alternatives. Mostly, I am horrified that you told me that no negative ramifications result from having a hysterectomy. I have since spoken to and read about many, many women and doctors who will tell you otherwise! If you were ignorant of these facts, then I hope you will read this enclosed book, so you can be among the doctors who can no longer say “I didn’t know” and who can honestly tell their patients about how their lives may change after a hysterectomy. Among numerous other effects (including personality changes, pelvic pain, fatigue, back problems, increased risk of heart disease) a woman will certainly no longer be able to have a uterine orgasm without a uterus.

Patients should be shown a video about female anatomy and the vital functions of their female organs (such a video is available on the HERS website) so that they won’t give “uninformed consent” to a hysterectomy. And, they should understand that they have a choice and what all of those choices are.

Please help stop this unnecessary brutalization of women. Unless a hysterectomy is warranted (and it almost never is), you are not saving lives, you are ruining lives.

Sincerely,

Meg
At March 14, 2012 at 10:00 PM , Dawn said...: Meg, brava!
At March 17, 2012 at 12:04 AM , Mad as Hell said...: Excellent letter, Meg!
You may also want to write reviews on doctor rating websites.
These evil doctors need to be stopped!
At April 3, 2012 at 8:40 PM , Amy said...: The MSN main page today had a quick article on the benefits of sex. One benefit stated the following:
"When a woman orgasms, her uterus contracts and, in the process, rids the body of cramp-causing compounds," explains Meston. The increased number of uterine contractions can also help expel blood and tissue more quickly, helping to end your period faster, she adds".

There you go... why would a woman get rid of her uterus?
At May 4, 2012 at 12:40 PM , Unknown said...: I was diagnosed with severe endometriosis in my late 30's. Fortunately I got some information from the Endometriosis Foundation right away. I had relatively little pain from endo. Nevertheless, my male OB/GYN recommended hysterectomy. However, I had read in the EF literature that hysterectomy doesn't always cure endo, so I said no.

The next time he saw me he still urged hysterectomy; I said no again. I also informed him that I was still hopeful of having children. (My husband and I didn't have any.)

Then the OB/GYN called me at WORK to try one last time to talk me into hysterectomy! This made me angry because I had no privacy at my office and didn't want to discuss it there. I just said NO!

Finally he referred me to a reproductive endocrinologist. This doctor did surgery to remove the endo lesions, especially around my ovaries. I still never got pregnant, but at least I did what was within my power at the time.

I have gone through menopause now, and it was relatively mild. I'm very glad I said NO to hysterectomy.
At May 4, 2012 at 1:44 PM , Ann said...: I am 73 years old. I've been resisting a hysterectomy for 20 years, the only offered solution for my prolapsed bladder and uterus. I did have some positive results from acupuncture about 17 years ago at an complementary medical center ... but then I moved away and, over time, the prolapse reoccurred. My new primary care physician referred me to a women's pelvic floor specialist, whom I saw yesterday. He went right to work, my bladder is back in place with a pessary inserted. I'm comfortable, not leaking, and, in fact, went to the gym this morning. Better late than never.
At May 7, 2012 at 4:38 PM , Lily said...: I am grateful for the information I received from the HERS Foundation. I have and still have a prolapsed bladder and uterus. I was so glad that about 7yrs ago I never agreed to a hysterectomy that my gynecologist recommended. He told me I would be back to see him. When around Christmas my prolapsed bladder reached stage 3 I went to see my family physican who arranged an appointment to see a specialist but I have to wait until July. My husband found a pessary on the web that I ordered and am now using with great success. I insert it daily and remove it nightly. At least now I can stand and do things and am going to the washroom less frequently. The uresta.ca company sent me three sizes and I chose the size that works for me. I am so thankful that I never did have the hysterectomy years ago. A friend of mine had a Hysterectomy a few months ago and is now having pain and discomfort which needs to be explored for the source! Lily
At May 7, 2012 at 4:39 PM , Marcia said...: I am currently 50 years old. A year and a half ago, I had an abdominal myomectomy to remove a single fibroid that was 10cm in diameter.
I was unaware of the fibroid until shortly before the operation as I had not had an annual check-up for over 10 years. I asked the gynecologist whom I was seeing at the time what my options were. She said that there was a very remote possibility that the fibroid was cancerous. She initially said she would be able to perform a myomectomy. However, when I pressed her, she said that it was possible and even likely that I would end up with a hysterectomy. I mentioned to her that I did not want a hysterectomy and wanted to leave this world with as many of my body parts intact as possible. She said that since I was not considering having children, there was no reason to keep my uterus.
I am very grateful to the Hers Foundation and Nora for the advice I received and the referral I received to a fertility specialist who was willing to perform the abdominal myomectomy. Although I have a medical condition that made the operation a little riskier than usual because of the possibility of excessive bleeding, the doctor was willing to operate. He took the time to answer all my questions and to reassure me that my life would be better after the removal of the fibroid. My only qualm came when I was asked to sign a form permitting the doctor to perform a hysterectomy should it be required to save my life....
I cannot say enough about how much I appreciate this doctor's skill and honesty and how good I feel post-operation. I was able to leave the hospital the next day and to begin recovery at home. I have had absolutely no complications and my life is so much better: no waking up throughout the night and worrying about the proximity of restrooms; no more excessively heavy periods; and, to my surprise, a return of certain sensitivities.

Marcia
At May 9, 2012 at 9:28 AM , Leslie said...: I strongly encourage you to resist hysterectomy. I was diagnosed with cervical cancer and an immense ovarian tumour 20 years ago. Doctors subjected me to strong pressure and scare tactics.

Through research and asking careful questions of medical people---including pharmacists & nurses---I discovered hysterectomy is the most "easy & profitable" surgery. As opposed to such options as cutting around a growth, which is time consuming and not as profitable for the surgeon.

Even after I found a surgeon who agreed to do minimally invasive surgery, she verbally abused me with, "Even if you had a hysterectomy, you'd still have a vagina!" As if the only use or pleasure of my sex organs, was for males to enjoy.

I replied, "My God, have you never had a uterine orgasm?" She was silent.

With male doctors, I ask this of their wives whenever the topic of hysterectomy is raised. They also fall silent.

Just prior to surgery, I was subjected to mind control tactics. It is extremely abusive to wait until a patient is sedated for surgery & her personal support has been dismissed, before presenting the waiver. My eyes crossed as I tried to read the parts about allowing students to participate, & giving my permission to perform any procedure "deemed necessary." Which of course means I might wake up to find I was hysterectomized & colostomized. The surgeon and attending nurse fought with me as I shakily crossed out sentences & initialed my informed choices. It was a nightmare. What an awful thing to do to a person, right before surgery. As I said, it is mind control. If they were as concerned about your wellbeing as they are of their own, they would present the waiver when you are with your friends/family, have time to call a lawyer, and definitely not under the influence of mind altering drugs.

I still gratefully have all organs intact. I also refused chemo. I relied on organic juices, particularly carrot & wheatgrass. I meditated in the forest daily, swam in sunshine and ate whole foods. I have been cancer free for over 20 years.

My resistance to hysterectomy was also informed by my former job as a veterinary assistant. It is well known that neutered animals are prone to obesity, and I've constantly seen spayed females with bellies nearly touching the ground from the loss of internal support systems. Assisting in surgery, I saw in graphic detail the ligaments that are cut, and how the animal's "middle" collapses. As HERS teaches, the uterus is literally the middle support structure of the torso.

Many animals are heavily depressed after hysterectomy, as well as urine incontinent. I am pro-neuter, as it saves animals' lives (better one neutered than potentially thousands of kittens/pups abused or euthanized), but the after effects can be quite severe. If you are a pet lover, I suggest paying the extra to have your female's tubes tied, or only an ovarectomy. Vets do know how, they just fear it may stop people from spaying due to cost.

My periods have always been a nightmare. Heavy to the point I have had to visit Emergency. The effects are now mitigated by the wonderful progesterone hormone Megestrol. If my period remains heavy for over 5 days, I simply take a pill for 2-3 days, and it stops.
At May 10, 2012 at 8:11 AM , HERS Foundation said...: To everyone who posts a comment Anonymously,

Please post your comment with your name or an alias so that others can follow the "voices" in the discussion. Comments posted anonymously will be reposted with an alias assigned by HERS if we have time to repost it, or it will be deleted.
At June 19, 2012 at 4:12 PM , Unknown said...: At 50, last Oct 2012, I went in for my regular Pap and annual check up. The doctor said my uterus was ‘slightly’ enlarged. I said, “I know, you tell me that every year.”
He said, we should schedule an ultrasound. I said, we’ve done that. He looked in my file, and said that was 5 years ago, time to do it again. Fine. I went.
I got an urgent call within minutes of getting home saying my uterus was EXTREAMLY large and I needed to see an OBGYN right away. My doctor called me 3 times that day.
Something he had never done in the 14 yrs I’d been seeing him. This was on a Friday, the OBGYN appt was scheduled for the following Monday. I went in, the doctor did a quick pelvic and said it all needed to come out.
Including the ovaries. I said, I don’t’ want surgery. He said you have no other option. I said, “how soon”, he said, “now”. I felt my uterus quiver. It was like that shake you get all over your body and someone says, “Someone just walked on your grave.” I said, almost in tears, “I can’t do this now.” He said schedule an appt for 4 months, come back in and we will schedule it then.
He never asked me about my periods or pain.
My regular doctor called and said he wanted me to come in and discuss what the OBGYN had said. I went in and told him. The doctor slapped me on the let in a playful?? manor and said. What are you waiting for? You don’t need it, it’s just takes up space and the longer it’s in the more likely something will go wrong. I did start to cry then and he got up and left.

I saw 2 more doctors, one was an herbalist and then other was an OBGYN. I told this OBGYN, I am not looking for a second opinion. I want a different opinion or I will leave and find another doctor. The second OBGYN suggested I do a biopsy. We did it right then and there. Week or so I get the phone call…nothing wrong, we waited 4 months and with the herbs, healthy eating, exercise and meditation, my uterus, still enlarged, but smaller. He said come back next year and have your pap done here. I said, I’d be back.

I’m keeping all my girly parts. So ha…pay your boat payment with someone else’s uterus.
At August 14, 2012 at 4:02 PM , Louisa said...: I'm surprised so many dr's jump straight to hysterectomy makes me realise how rare mine was as he did everything to avoid giving me a hysterectomy he worked on me twice simetimes 3 times a year for 5 years in the O.R to try and let me keep my bits including the coil, injections the lot in the end he had to admit defeat and do the operation he'd tried so hard to avoid in some one only 32 I'm glad he did as it turned out the reason I was getting so sick was I had gangrene on and was part of the outer wall of my womb if it hadn't come out when it did I'd be dead by now as it was slowly poisoning me don't get me wrong I'm all for avoiding this operation if you can but some women really do have only the choice of hysterectomy or death it's not always the dr's scaremongering
At August 19, 2012 at 9:25 AM , Gutted said...: Louisa,
Sorry this happened to you. Yes, it sounds like you had a condition that's very rare and was one of the TINY 2% of so of hysterectomies that are truly necessary. Did one of the procedures he did introduce infection that then caused the gangrene? Just curious how you got it in the first place.

There's something seriously wrong when even ACOG says that 76% of hysterectomies are unnecessary yet gyns haven't let up on doing them.
At August 19, 2012 at 9:51 AM , Gutted said...: I'm happy to read some of the recent posts from those who've avoided hysterectomy.

Leslie's story of being presented with consent forms in pre-op while under the influence of sedation drugs is all too common. Another tactic is that the surgeon doesn't even show his/her face prior to surgery. These medical professionals know that hysterectomy is the end of these women's lives.

Two gynecology residents were present during my surgery (and I suspect they assisted) but I don't recall this ever being mentioned or consenting to allow this. I didn't even know it was a teaching hospital because it isn't affiliated with a university. Whoever did my surgery really did a number on my bowels because they haven't been the same since. Sometimes it's all I can do to make it to the bathroom and I worry about how bad this will get. And all that should have been removed was a benign ovarian cyst.
At September 8, 2012 at 11:29 PM , Caren said...: Now that my "harmless" fibroids have calcified, they are causing unendurable pain by pressing on bladder, intestine and sciatic nerve. Hysterectomy is my only option - at 61 I couldn't care less about the loss of my female organs - never used 'em. But I can hardly wait to be rid of the pain.
At September 10, 2012 at 12:28 AM , Northgate Nan said...: Bless you Caren and all the best! I spent 6 years post menopause waiting for my fibroids to shrink, instead they continued growing to the point of seriously impeding bladder and bowel function. I did lots of research, including reading all the unbalanced scare tactics on this site before making my decision to have a hysterectomy. I'm doing great. I have my bladder and bowel function back 100 percent! Oh what a relief! And I FEEL GREAT for a change. I haven't had such intense orgasms for probably at least 15 years! Hers goes WAY TOO FAR. This is NOT education. As far as I'm concerned it's a holy terror campaign. Believe you me I am steaming mad, and what I have to say to you women out there - BEWARE.
At September 10, 2012 at 6:58 PM , Gutted said...: Caren,
Sorry you're dealing with this! How long have they been calcified? I've read that calcification is the end stage of fibroids so they don't need to be treated. But obviously you can only endure so much pain for so long before taking some sort of action. How long have they been calcified and has anyone given you an idea how long this may last? It sounds like your mind is made up but I hope you've watched the female anatomy video to be sure of your decision.

I didn't have fibroids but I've recently developed bowel problems as well as less severe bladder problems. I have pressure, mild pain, and usually urgency before BM's as well as occasional fecal incontinence. I vacillate between incontinence and diarrhea with diarrhea being more prevalent. My bladder doesn't empty properly either. I didn't have any of these issues prior to my hysterectomy.

Also, your shape will change because your pelvic support structures will be severed. You'll get the shortened, compressed midsection that's inevitable after hysterectomy. And this usually causes chronic back and hip pain.

Best to you!
At September 11, 2012 at 2:17 PM , HERS Foundation said...: One wonders why a woman would encourage other women to have their female organs removed, and dismiss the experiences of the hundreds of women who have posted on HERS blog about the damaging effects of hysterectomy.
At September 11, 2012 at 2:31 PM , Lenore said...: This blog is not filled with scare tactics. "Scare tactics" would be unsubstianted rumors. The hundreds of women who have written here can certainly substantiate their health problems since their hysterectomies. The real unsubstianted rumor is that hysterectomy rarely causes problems for women. Those women who have not had negative effects are either exceptions, or don't realize the health problems they have are linked to the hysterectomy because their doctors have told them it's impossible, or do not know what lies ahead. A friend of mine who looks and says she feels great after her hysterectomy also had thyroid cancer after her hysterectomy. Studies have shown a 50% higher risk of thyroid cancer after hysterectomy. The Oxford Journal states: "Elevated risk of papillary thyroid cancer following hysterectomy is biologically plausible, as there are reproductive and
endocrinological causes of thyroid cancer." If I had disabling pain that prevented me from making a living and there was nothing but hysterectomy that would solve it, I might consider it - after I had looked at ALL other options - but I would know that there were risks. However, I am quite certain my doctor would tell me there were no risks, and that if I suddenly developed other problems, he would tell me I needed a psychologist. Is this not heinous?
At October 10, 2012 at 12:19 PM , Robin said...: Every single body organ and cell has an intricate and irreplacable function...
Everything working in sync is a mysterious beauty and artful science.
Beauty is truth..There is appreciation of intelligence as thousands of women speak out to this issue to share their truth.
At November 15, 2012 at 1:49 PM , Pauline A said...: I am 61 years old, English, and live in a little country town in Greece. I have a prolapsed uterus which has slowly been getting worse and the time has come to do something about it. All I can say is thank you so much to the HERS foundation and to all the lovely ladies who have made detailed comments on this blog. When I went to a gynaecologist in a neighbouring city a month ago, thanks to all of you, I was well prepared for what he said ..... "you have a prolapsed uterus in stage 4 going into stage 5 and your only option is a complete hysterectomy" .... and he could perform the operation "next week!!!" He explained the whole procedure, and when I dared to ask him about after effects, because I had a little list of questions thanks to your website, everything was brushed aside. He tried to scare me by saying that I would soon need a catheter to be able to pass urine and my bowel would be the next organ to prolapse. I do not have incontinence or constipation, but he did not bother to ask. All I have is that I am uncomfortable. I now put my uterus back into place every morning, after my shower and it feels so snug and usually stays in place for quite a few hours, leading me to believe that a pessary will help me. He told me that he "would not" give me a pessary, not "could not". Quite a few people I know have heard of women with serious problems due to having a hysterectomy, whilst others seem to think that it not going to make any difference at this stage in life. Thank goodness for HERS foundation. I have an appointment with a female gynaecologist tomorrow and have informed her of my condition and told her that I am not interested in having an operation and want a pessary. She sounded quite positive on the telephone so I hope that all goes well. If it does I will spreading the word. Thanks again everyone.
At November 15, 2012 at 2:27 PM , Lenore said...: Pauline, I am so glad that this blog helped you. It helped me, too. More than ten years ago I was told I would "have" to have a complete hysterectomy because of fibroids. I quit going to the doctor because I was sick of hearing it. I am now 50 1/2 and perimenopausal. I found a doctor, recommended by HERS, who told me that he believed menopause would cure my fibroids. I actually sense that they have been getting smaller for the past few months - my pants are fitting better -, and I am beginning to realize that all of my waiting was not in vain - I will be able to live out my life with the natural hormonal balance I should have for my age, and with my organs intact. I did not have to take time off from work for major surgery, or deal with any of the horrible side effects or complications of hysterectomy. When I am through menopause and there has been more significant shrinkage, I do plan to publicize my story and to credit HERS with saving my life.
At November 19, 2012 at 12:56 PM , Paige said...: I am 51 years old. I have a complicated history which I will explain. I have this strong pull, feeling to not get a hysterectomy. I can't explain it.

I have had fibroids since my 30's. They shrink,and come back. It hasn't been until my mid 40's that they really began to cause heavy periods and severe cramps. Then began the anemia. Three years ago I noticed I couldn't climb stairs without getting winded. I went to my OB/GYN who of course talked me into scheduling a hysterectomy. I lost my job and was unable to get the surgery. I treated my anemia with iron supplementation and diet changes. My H&H was 24/8

Two years ago I noticed two superficial clots in my left calf and was taken off of birth control pills which helped control the bleeding.

Last November I was hospitalized for anemia, Deep Vein Clots and Pulmonary Embolisms. My H&H was 22/4 and I got 4 units of blood. The clots were related to an injury to my left knee (fell getting a kitty from a tree, stupid story). The Dr.s threw the word Cancer around like it was nothing. I don't have cancer...I fell from a tree, tore my LCL and wore a tight knee brace which caused my blood to pool in my left calf and form a clot which broke off into 2 pieces. One ending up in my right lung and the other in my left. Even though I repeated this story, the focus was on my uterus being the culprit. I must explain I had an OB/GYN, Internalist, and Pulmonoligist. The Internalist was the confused one.

This past year has been a HUGE struggle. I started a new job, which I love but I'm a cashier which means I stand. I have on three occasions had episodes of flooding so bad I had to go home because my clothes were bloody. Last night I gushed! It was so bad they had to find me some pants to wear home. My pants were soaked. It was so embarrassing.

I would guess my anemia is pretty bad now. I am sleeping alot, and having difficulty walking stairs. Last week I was feeling as if I would pass out (which is what I did last year). I have to sit when I feel this.

Everyone at work says "get a hysterectomy". They even talked about getting a drive together to donate paid time off to me. Embarrassing. I know if I go to a Dr. they will take one look at me and want me to get a hysterectomy. I'm 51 YEARS OLD! I should be through this soon.

To complicate this more, last year they put me on Progesterone to keep me from having periods while on blood thinners. My uterus got HUGE. My fibroids were enormous. I looked as tho I was four months pregnant. They finally took me off, and my fibroids shrank noticeably within a week. But what concerns me is that I have adhesions due to the shrinking and growing of my uterus. A hysterectomy would be complicated because of the size of my uterus and whatever adhesions have formed. Also, there is a increased risk for blood clots with surgery.

The positive: What I have been doing on my own to combat this. I am eating a diet high in Iron and watching my iron inhibitors as well as my iron enhancers. I work at Whole Foods and have access to Hemaplex which I take every day. I also take in Apple Cider Vinegar and Black Strap Molasses daily. I am eating healthier and trying to stay active when I'm not anemic

I want to win this battle, but I'm not going to lie, the battle is getting monumental. I can deal with the pain from my fibroids, it's not being able to be active due to my anemia and my flooding at work that are the problems. I'm glad I found this site and have only begun to look at the comments. I'd love to hear from anyone going through the same thing I am. I don't need to hear "get a hysterectomy". I hear that on a daily basis. I'm looking to find a holistic Dr who will help me through this rather than chastise me for allowing myself to get so anemic.
At November 19, 2012 at 12:57 PM , Paige said...: I am 51 years old. I have a complicated history which I will explain. I have this strong pull, feeling to not get a hysterectomy. I can't explain it.

I have had fibroids since my 30's. They shrink,and come back. It hasn't been until my mid 40's that they really began to cause heavy periods and severe cramps. Then began the anemia. Three years ago I noticed I couldn't climb stairs without getting winded. I went to my OB/GYN who of course talked me into scheduling a hysterectomy. I lost my job and was unable to get the surgery. I treated my anemia with iron supplementation and diet changes. My H&H was 24/8

Two years ago I noticed two superficial clots in my left calf and was taken off of birth control pills which helped control the bleeding.

Last November I was hospitalized for anemia, Deep Vein Clots and Pulmonary Embolisms. My H&H was 22/4 and I got 4 units of blood. The clots were related to an injury to my left knee (fell getting a kitty from a tree, stupid story). The Dr.s threw the word Cancer around like it was nothing. I don't have cancer...I fell from a tree, tore my LCL and wore a tight knee brace which caused my blood to pool in my left calf and form a clot which broke off into 2 pieces. One ending up in my right lung and the other in my left. Even though I repeated this story, the focus was on my uterus being the culprit. I must explain I had an OB/GYN, Internalist, and Pulmonoligist. The Internalist was the confused one.

This past year has been a HUGE struggle. I started a new job, which I love but I'm a cashier which means I stand. I have on three occasions had episodes of flooding so bad I had to go home because my clothes were bloody. Last night I gushed! It was so bad they had to find me some pants to wear home. My pants were soaked. It was so embarrassing.

I would guess my anemia is pretty bad now. I am sleeping alot, and having difficulty walking stairs. Last week I was feeling as if I would pass out (which is what I did last year). I have to sit when I feel this.

Everyone at work says "get a hysterectomy". They even talked about getting a drive together to donate paid time off to me. Embarrassing. I know if I go to a Dr. they will take one look at me and want me to get a hysterectomy. I'm 51 YEARS OLD! I should be through this soon.

To complicate this more, last year they put me on Progesterone to keep me from having periods while on blood thinners. My uterus got HUGE. My fibroids were enormous. I looked as tho I was four months pregnant. They finally took me off, and my fibroids shrank noticeably within a week. But what concerns me is that I have adhesions due to the shrinking and growing of my uterus. A hysterectomy would be complicated because of the size of my uterus and whatever adhesions have formed. Also, there is a increased risk for blood clots with surgery.

The positive: What I have been doing on my own to combat this. I am eating a diet high in Iron and watching my iron inhibitors as well as my iron enhancers. I work at Whole Foods and have access to Hemaplex which I take every day. I also take in Apple Cider Vinegar and Black Strap Molasses daily. I am eating healthier and trying to stay active when I'm not anemic

I want to win this battle, but I'm not going to lie, the battle is getting monumental. I can deal with the pain from my fibroids, it's not being able to be active due to my anemia and my flooding at work that are the problems. I'm glad I found this site and have only begun to look at the comments. I'd love to hear from anyone going through the same thing I am. I don't need to hear "get a hysterectomy". I hear that on a daily basis. I'm looking to find a holistic Dr who will help me through this rather than chastise me for allowing myself to get so anemic.
At November 20, 2012 at 10:01 AM , HERS Foundation said...: Paige, you are on the right track with what you are doing to control the bleeding.

The extremely heavy bleeding is most likely being cause by a submucosal fibroid, one that is located in the endometrial layer (the inner most layer of the uterus that is shed during menstruation) of the uterus. A submucosal fibroid that is <3cm can be shelled out with a hystereoscope, a long scope that is inserted into the vagina, into the cervix then into the uterus. A tool is attached to the hysteroscope and the surgeon chips away at the fibroid until nothing remains but the shell. Menstrual bleeding then returns to normal rather than very heavy.

Before considering any surgery I suggest that you have a simple blood test to determine how close to menopause you are. Have your follicle stimulating hormone (FSH) tested on the first or second day after menstruation begins. This is very important. If the blood is not drawn on the first or second day after menstruation begins it will not be accurate. If your FSH is >40 you are menopausal. If it is 30-40 you will soon be menopausal. If it is 20-30 menopause is still a couple of years away, and if it is <20 it will be longer. If you find that you are close to menopause you may decide to wait it out.

Among the foods that will help significantly to maintain your iron level is liver. If you don't like liver, either the taste or texture, try getting chopped liver at a delicatessen. Put a small amount of soy sauce on it, as they do in Japan where it is a delicacy, and it will be more palatable.

When you have heavy bleeding lay down on your back, elevate your feet, and put an ice pack on your pelvis to reduce the blood flow. Do not use heat, it increases blood flow.

For the clot you had in your leg are you taking a blood thinner such as Cumadin or Heparin? If so it will be very difficult to decrease your heavy bleeding, and either shelling out of the submucosal fibroid or myomectomy will be the most conservative way to manage your bleeding.

You are doing a great job managing this issue, keep up the good work! If you need to speak with a counselor at HERS you can schedule a telephone appointment by calling Jacqueline at 610.667.7757 or emailing her at jkabak@hersfoundation.org.
At December 25, 2012 at 12:36 PM , Anonymous said...: too much hysterectomies
Il y a trop de l’hystérectomie dans la gyn. moderne . Moi il y a 4 ans on m'a proposé L'Hystérectomie à cause des petits fibromes. Je n'ai pas fait. On ma proposé ou plutöt obligé de prendre des hormones. Je n'ai pas fait...Je me suis soigner avec des plantes. Maintenant je suis ménopausée et je me sens tres bien avec mes petits fibromes. C'est pas toujours nécessaire faire une Hystérectomie prouwe mon cas. Attention au Gynécoloque abusive
IL Y A DES MÉTHODES COMME NOVA SURE QUI GARDE L' UTERUS CHEZ LA FEMME , mais les médecins n ont parle pas?
je me sens malade quand je pense a tous ses femmes qui ont détruite leurs corps inutilement et aux docteurs qui font des opérations pour le commerce Seulement dans le cas d'un cancer hystérectomie est fondé.
At December 25, 2012 at 4:27 PM , Dawn said...: I can read French much better than I can write it, so I will respond in English. I am curious about where the writer lives - in France, or in Canada? I am glad the writer was able to manage her fibroids with plants, and would hope that an international movement to stop unnecessary hysterectomies could grow. And as the writer said, although the only reason for hysterectomy would be cancer, fibroids are rarely - or never- cancerous. When I was about 38, I too was told I must have hysterectomy, and the C word was thrown around, but I am now 50 and perimenopausal, and rarely have symptoms at all. When my fibroids were first diagnosed, I was in Germany, and the doctor did not suggest hysterectomy - he told me to exercise a lot, which was good advice. When I did that, my periods were much lighter. But after returning to the US, I heard only, "You must have a hysterectomy" until I went to a doctor recommended by Nora. I went to this doctor just to get some blood work done, but did not want to be pressured to have a a bunch of tests and a hysterectomy when the doctor palpated my abdomen, and be shamed for not having done so. I know that is what would happen if I went anywhere else.
At December 26, 2012 at 10:15 AM , Susan said...: I'm glad to read these stories of perseverance! Keep at it ladies. Be careful if you do go into an operating room. Graduate Medical Education program or not, gynecology OR's are very dangerous places without a doctor who treats the female organs for what they are - essential her entire life.

Ironically, I get accused of using scare tactics on various forums by both intact women considering hysterectomy and women who've had the surgery. They would rather not believe that it's their doctors who're using scare tactics.
At January 10, 2013 at 4:44 PM , tammyellifritz said...: I am so glad you are listening...I had a pulp in my uterus causing bad periods, bleeding and cramps. Doctor was a well loved gyn. doc. office Partners in women health. Never dreamed what happened did. Had cancer Doc in surgery no cancer in pulp no bad pap ever everything looked great. He removed everything but the stump These barbaric surgeries not only shorten our lives, but make us into high maintenance patients for life. Healthy women are made sick by greedy, unethical doctors and cause severe internal damage. I was horrendously harmed by gynaecologists, who tricked me into this radical surgery by fabricating I had cancer. They needed recruits to use as guinea pigs for training practice. I was totally unnaware that 90% of gynaecological procedures are unnecessary, and they use every trick in the book to coerce unsuspecting women into unnecessary hysterectomies.of my cervixs. My life stinks now! PLEASE help stop this>
At January 19, 2013 at 5:48 PM , Anonymous said...: Tammy,
The tricks these gynecologists use are truly sickening. I'm sorry you also fell victim to these despicable tactics.
At May 23, 2013 at 1:35 PM , Carly said...: I just wanted to Thank everyone for sharing their stories. I'm 28 yrs old and haven't even been asked if I want a hysterectomy. What brings me to this website is the fact that I've met so many women in my life who have had a hysterectomy and they highly recommend it and mention no complications. My mom underwent a hysterectomy about a year ago and she's happy with her decision. I can't help but cringe at what complications may come in the future for her, even though she still has her ovaries.

I had a homebirth with my 3rd child almost 2 yrs ago and I knew she would be my last but from what I've noticed with the women in my family, I didn't want to get my tubes tied because it always leads to prolonged painful periods and then eventually a hysterectomy. I've seen this connection with my other friends as well (tubal then hysterectomy).

I haven't heard anything negative about the procedure until coming to this website. I deep down knew that the uterus, ovaries, and cervix were very important to a females health. I'm so glad that there are women speaking out about the complications and how it affected them. It seems like all the women that I know who have had hysterectomies can't say enough positive things about it. It's almost like they are pushers for this procedure.

I haven't had any problems with my intact womb and I'm going to keep it that way! My heart breaks for the women who were mislead into getting their female parts amputated but I just want you to know that your stories are benefiting us women who are still intact and will do whatever it takes to remain that way.

#Carly
At May 25, 2013 at 12:45 AM , Jan said...: I’m 52.I have an 11 cm submucosal fibroid. My gyn said "you're in menopause!". My FSH is 37.2 (is that menopause?) Last year it wase 5.4. Last year my fibroid was a little larger, 11.9 cm. I am going to go for an MRI next week.

On my recent ultrasound, they found both kidneys to be in a state of hydronephrosis. I am thinking that the fibroid is pushing/pressing the ureter probably causing the swelling of the kidneys. I have a tiny amt. of pain sometimes, I know I have some change of urinal flow. And, I have my “period” all month long, very very heavy. Been heavy for years. Of course, this year has gotten worse. All the gushing, clotting, all worse.

I’ve tried apple cider vinegar, and months ago, tried blackstrap molasses. Maybe they’ve helped a bit, but not enough.

Last I’ve seen my doctor, she nonchalantly said, “we’ll just take our your uterus”. I am looking for a different answer. Would FUE be safe? I don’t want the side effects of a hysterectomy!!

After reading all the options, everything has risks. A lot of them seem to end up as hysterectomies after further future complications.

I don’t have ANY menopausal symptoms by the way that I ever noticed. My estradiol is 30. Last year it was 156. this year my LH is 23.7 (don't know last year's).

I think I have to do something due to the kidneys being affected by the fibroid.

So are my levels menopausal or peri-menopausal?

Also, where do you go to find a gyn that specializes in fibroids? I know that an interventional radiologist does FUE. I guess you just call one of those? But do people go to an ob/gyn? Mine said that no one would do an embolization if the fibroid turns out to be in the muscle - is that true? On my report, I see that I have an enlarged uterus of 11x7x10 cm and endometrial of 9mm. Last year it was slightly smaller 16.5 x 10 x 7.4 with endometrial of 7 mm thick.

Hope that getting rid of the fibroid would fix the kidneys. Last year I didn't have any hydronephrosis.

Should I find a gyn that works with more menopausal and pre and post menopausal women or just a regular gyn knows all about the uterus and alternatives? this one says cut!
At May 25, 2013 at 12:24 PM , HERS Foundation said...: Jan,

If your Follicle Stimulating Hormone (FSH) was 37.5, you are close to being menopausal. That is, if the blood for the test was drawn the first or second day after menstruation began. If the blood was drawn at any other time the result has no meaning.

If your FSH is >40, you are menopausal. Between 30-40, menopause will be soon. Between 20-30, menopause is still a couple of years away. <20 it is going to be longer until you are menopausal.

An ultrasound often finds transient hydronephrosis. To know if it is true hydronephrosis, you should ask your gynecologist to give you an order for an Intravenous Pyleogram (IVP). It is a radiologic study that will show whether the hydronephrosis is transient or whether it is a serious medical concern.

There is only one cause of the kind of bleeding you described, flooding with large blood clots. A submucosal fibroid, one that is located in the inside, endometrial layer of the uterus, causes your symptoms. A submucosal fibroid that is <4cm can be shelled out vaginally with a hysteroscope. If it is >4cm you would need a myomectomy, the surgical removal of the fibroid, leaving the uterus intact.

The only reconstructive way to manage fibroids that cause severe symptoms is with myomectomy, not Focused Ultrasound, Uterine Artery Embolization or other damaging procedures.

For more information go to HERS website www.hersfoundation.org. On the Home page, scroll down and click on the links to "Fibroids", "Myomectomy", etc.

If you would like to discuss these issues with a counselor, contact Jacqueline Kabak at HERS, 610.667.7757.
At June 24, 2013 at 10:56 PM , Jan said...: Jacqueline,

would a Cat Scan also show whether bilateral hydronephrosis is transient or a real medical condition? I went to a urologist who looked at my ultrasound from early May. He wanted me to get a Cat Scan. He also said he didn't think that my large fibroid was blocking my ureter, but that it probably is my uterus. Then he suggested robotic surgery from a gyn to remove the uterus. Aside from the nonchalant attitude, could a uterus all of a sudden block the ureters to cause this kidney condition, and NOT be from the fibroid?
In the meantime, I started on Bragg's organic apple cider vinegar and my bleeding went from "murderous" daily, for months of extremely heavy to... nothing. I had "nothing" for 25 days, and 2 days ago my "period" started which is light.
The thing is, if I can control the bleeding from the fibroid, and thus help my anemia, I really don't need to "do anything" and just wait for menopause to naturally set things straight. I still look 6 months pregnant, but granted I need to lose weight all over anyway - I'm 40-50 lbs. over my ideal weight.
the urologist also said that if I didn't do anything, and waited until menopause, I'd have dialysis or kidney disease in 5 years by the time menopause kicked in.
should I go for the Cat Scan, just leave everything be, or call to ask about an IVD test?
At June 25, 2013 at 12:11 AM , HERS Foundation said...: Jan,

Your issues are too complex to discuss via a blog. Please contact Jacqueline Kabak at HERS at 610.667.7757 to schedule a telephone appointment to discuss these important issues.
At October 22, 2013 at 4:42 AM , Lisa said...: I am 45. I have been wanting to save my uterus, and I have tried all sorts of alternative options. I eat organic, do juicing, eat wild salmon, no hfcs, i eat nuts, seeds, fruits veggies,flax oatmeal etc... I tried physical therapy and even internl trigger point therapy and pain meds. I am in excruciting pain, and I have NOT even had a hysterectomy yet. As a matter of fact my pain started after i tried the physical therapy and trigger point therapy. This is NO joke. 6 months ago I could do a cartwheel, go swimming and hiking... Now my R hip and back of thigh and front lower r quadrant are very painful, weak, excruciating, I can nolonger dance, swim, hike, or do much of anything. Taking care of my kids and house is terrible work now. I cant even work. I dont have fibroids, I dont have cancer.. here is my history...I am scheduled for a dvh in about 2 weeks. I have had extreme, weakening, painful,...LRQ radiating to hip joint, buttock, groin and back of thigh for 6months.. A bit of tingling, and slight muscle spasms, though not alot. I have NOT had my hysterectomy yet. I was hoping it would help with this pain.

My history is a R oophorecotmy and appendectomy removal in 2008. Sex was painful then, but still doable.

Since 2008 surgery, I didnt have sex alot , and didnt really have a BF. I could do cartwheels, and hike and swim though no issue at all.

Last year thought I noticed It was a bit more difficult to urinate, and if I walked for a long time, I got alot of central pelvic pressure. I also just couldnt wear a tampon anymore at all. I was told I had pelvic organ prolapse. I can see my cystocele right at the opening. and my cervix is about half an inch from the vaginal opening.

Well, I went to a uro gyne and they started treating me for tight or weakned pelvic floor by applying pressure internally in my vagina, and making me do hip rotations, all of this was to strengthen my pelvic floor, In the mean time I got a BF and started having sex.

Ever since then I have been in excruciating pain, unable to work, barely able to take care of the kids, house and dog.

Its been 6 months of pain, somedays are now better than others, compared to the first 3 months I couldnt walk more than3 minutes. Now on a good day I can walk about 15-20 minutes.

My doc says I may have scar tissue that is causing this pain, and he thinks a dvh will help but he doesnt know if it will take away the pain. I am 45 and I was very active, This pain has got me down,

Has anyone any relevant experiences, I believe this is some kind of nerve damage, although I do not know what the cause of it is.

I am serioulsly wondering if a hysterectomy will help or hurt

I cant live like this it is debilitating. but i cant function and I want to play russian roulette at this point.
At October 22, 2013 at 8:48 AM , HERS Foundation said...: Lisa,

Did you discuss surgical resuspension of your uterus with repair of the cystocele (bladder prolapse)?

One more question. Have you seen a neurologist?

Before making a decision about proceeding with having your female organs removed, there are two videos that are important to watch. Go to HERS homage at www.hersfoundation.org and scroll down the page to the link "Prolapse: uterus/bladder/bowel. The information about alternatives is detailed. Then go to the top of the page and watch the short conference trailer. Lastly, but extremely important, click on the "Female Anatomy" video in the navigation bar at the top of the page. This video should be seen by every girl and woman. It is not a video of surgery, it explains where the female organs are, what their functions are, and what happens inside the pelvis and abdomen when the organs are removed.

If you would like more information you can email HERS at HERS@hersfoundation.org or call 610.667.7757.
At October 22, 2013 at 10:59 AM , Lisa said...: Hello,

Thank you for your quick reply. I watched all the video clips and went thru the alternative options. I forgot to mention I also tried a pessary, with nothing but pain. I havent been able to work for 6 months, so I do not have good insurance. I have state govt insurance. I know of NO doc that will do a suspension of ligaments with good insurance, let alone with the insurance I have.

At this point I left a message with my doc asking him if before he goes ahead and takes out the uterus, could he check for adhesions and if he found them could he remove them without removing the uterus. If he doesnt find any then he can remove the uterus but leave the remaining ovary.

At this point I am in soo much pain, I dont even care so much if I can have sex or not. I've gone without sex for years before....I just want to be able to walk and move around with no pain and take care of the activities of daily living. (All of my responsibilities!) Ive had MRIs done and all they see is mild arthritis of the hip and a very mild degenerative s1 disc change.. both of which I did NOT have last year. UGGGGG. I just dont know what to do and I am a person who weighs pros and cons to the point of insanity!!!!!!
At October 24, 2013 at 2:09 PM , Truth Seeker said...: Lisa,
I don't know a lot about prolapse but the handful of women I know who had prolapse did not have those severe symptoms.

I had a hysterectomy and it's caused nothing but more problems, heartache, and regret as most women seem to experience.

Unfortunately, too many urogynecologists will suspend the bladder yet remove the uterus. This doesn't make sense to me. Why not suspend both?? I did see a Youtube video the other day where a urogyn was saying the same thing - suspend both organs instead of removing the uterus. So there are doctors out there who will preserve your uterus.

If you sign a consent form that allows organ removal regardless of the conditions, chances are GREAT that you will lose your organ(s) even if it/they were not the cause of your symptoms.
At October 24, 2013 at 4:27 PM , Truth Seeker said...: I should have also mentioned that a gynecologist or urogynecologist may advertise organ sparing treatments / procedures but then do a "bait and switch" to hysterectomy and/or oophorectomy.

I've seen numerous ads in a local women's health journal for a urogynecologist in my area who advertises "You Don't Need a Hysterectomy" for prolapse or many other problems. Yet, I know a woman who saw him for prolapse and he recommended a hysterectomy.

As far as the pessary, if it was fitted properly and the pain is from the prolapse then it would seem that it would have resolved that. So that's another thing that makes me question prolapse as the cause of your pain.

Maybe HERS can direct you on how to find a surgeon who does the proper diagnostics and uses organ sparing treatments, non-surgical or surgical.
At August 9, 2014 at 8:02 AM , Sabrinna said...: I feel rage. Absolute rage. I have fibroids. I had a myomectomy and 8 years of good health. Now they're back. Both times I have been pressured to have a hysterectomy. I told my surgeon the information I have collected. He LIED to me. He called me misinformed and uninformed. I feel so alone fighting my own damn specialist.

My mother was bullied into a hysterectomy and I want to cry for her. She had prolapse uterus. A repair was all she needed. I don't feel like I can talk to her about my struggles because I don't want her to feel bad about herself and her body.

I just feel so angry at the misogyny.
At August 9, 2014 at 11:13 PM , Sabinna said...: Hi,
If there is anyone still following this blog can you give me some advice on broaching this topic with my mother who was hysterectomized about 5 years ago. I am holding on to my organs no matter what and I would like to connect with her, share experiences and talk openly and honestly. I am very afraid of hurting her and not being sensitive enough. This issue is very personal to me, but it is even more personal for her. I am still intact with options. This was done to her without fully informed consent. How do I approach a hysterectomized woman about this issue, that she has faced and lost, and that I now face. How do I broach the topic in a way that is safe for her? Like most daughters, my mum is the most important woman in my life. Upon reading on HERS what was done to her, I cried for her. I want to be the person she can freely talk to. She has hinted at regret but then stops herself from saying anymore.

Any advice would be most gratefully accepted.
At September 11, 2014 at 3:49 PM , HERS Foundation said...: Sabina,

Yes, there is information available to you, and your mother. Please contact HERS either by email: HERS@hersfoundation.org or by phone: 610-667-7757.

I suggest that you go to HERS website at www.hersfoundation.org and watch the "Female Anatomy" video. There is a navigation bar at the top of the Home page. The video on the homepage, which is a short trailer of a ten hour hysterectomy conference, is also very informative.
At October 14, 2014 at 5:48 PM , Anonymous said...: I just want to say thank you to HERS and to everyone who shared their story. I saw the doctor today regarding delayed menopause and heavy bleeding. She immediately started talking about hysterectomy and how I didn't need my reproductive organs anymore as I am 52.
I am very glad I came upon this information and plan to hold onto my Uterus!
At October 14, 2014 at 6:04 PM , HERS Foundation said...: I am glad you found HERS, too! Bravo for you, seeking and using the information you learned!!!

Thank you to everyone who shares their experience, we are all in this together. Women helping women is powerful!

Nora W Coffey
HERS Foundation, President
At January 20, 2015 at 11:25 PM , Unknown said...: I am 59 years old. My work involves lifting heavy items, some more than 70 lbs!
In 2003 I had 3 inquinal hernias repaired.
2007 I felt a prolapse. I studied about it and lost 50 pounds, and learned to stand differently.
I was able to manage my prolapse with out too many issues.
In 2013 I lifted a package and my prolapse went from manageable to and extreme case. Hysterectomy was the word from everyone.
Here is my delema. I made an accident report as this was the straw that broke the camels back.
I was practically ushered out of the GYN's office. It was from "having babies" and that was the end of it!
I went to a 2nd Doctor and same attitude. Almost shameful.
I finally got all the records from my GYN and come to find out, the first mention of prolapse was 2003! The week after they found that my hernia needed repair again. Where can I find a Dr who doesn't push a hysterectomy, and can realize that childless waitresses, etc are experiencing prolapse, not just those who had babies!
At January 29, 2015 at 2:57 PM , Anonymous said...: I'm 61 now. In 2002 at age 49 due to heavy, frequent periods and heavy bloating, I was diagnosed with three large fibroids. Two doctors suggested hysterectomy. I said "no". I went into menopause within two years and guess what? No more pain and I still have all of my parts. If possible, just say "no"!.

Hysterectomy - the Experts Speak Out

Friday, September 9, 2011

The tide is turning!

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