Thursday, July 15, 2010

HERS 2010 Hysterectomy Conference: an extraordinary day

On April 24th, 2010 an unusual meeting took place. The HERS Hysterectomy Conference was held in New York. Educators and advocates gathered to discuss the alternatives to and consequences of hysterectomy and to arm women with information.

The Keynote Speaker, Congresswoman Carolyn B. Maloney(NY), a strong advocate for women’s rights, civil rights and human rights, showed unprecedented legislative support for HERS work to educate the public about the consequences of hysterectomy and our determination that women must be armed with this information before being told to sign a hysterectomy consent form. She noted that despite numerous studies, as early as 1948, which reported the high percentage of medically unwarranted hysterectomies being performed, medical practice has yet to change. “We are still experiencing an epidemic of hysterectomies,” she said, “Where is the outrage?”

Sybil Shainwald focuses her litigation practice on women’s health issues. In her talk, “The Medicalization of Women,” she explored the economic motivation to perform unwarranted surgery. “According to the western model, pre-menstrual syndrome is a disease, menopause is a disease, pregnancy is a disease, childbirth is a disease. From this model I reached the conclusion that being a woman is a disease!”

We had the rare experience of listening to a practicing gynecologist, Mitchell Levine, as he said that “hysterectomy is never ever needed for fibroids." Even more astonishing was hearing a gynecologist acknowledge, “…if you listen to women you get a sense of just how devastating this can be. Our arrogance in saying if we just take out this thing and you’ll be fine, it’s not that simple, it’s too sacred it’s too beautiful, it’s too complex to just go in there and just take things out.” It was an exceptional experience to have a gynecologist who truly cares about what is being done to women who sincerely wants to educate the public about the functions of the female organs and their critical importance to a woman’s health and well-being her entire life.

A panel of four women discussed their experiences with hysterectomies done by different doctors, in different circumstances, in different parts of the world, with the same outcomes. It is a tremendous act of courage for private people to reveal publicly their most personal experiences. They come together with the common goal to inform other women about the true consequences of hysterectomy and castration. They want women to be armed with the information needed if they are told a hysterectomy is “necessary”, and to spread the word so that what was done to them will not be done to the next generation. These are the voices of experience:

     Jen Bandes, hysterectomized and castrated at 19 years old. “What more could I have asked for, it   seemed liked a miracle solution, and a miracle surgery, or so it was presented to me.”
     • Tawanda Queen, an IT professional. “The doctor eyed me carefully when I inquired as to why hysterectomy was mentioned on the consent form, was I in danger of having one? She said “No” and proceeded to remove her female organs.
     • Nicole Choate, an RN for sixteen years. “My uterus had ruptured and nobody could give me a reason why. There are several possible reasons, maybe the Cervidil, and I was on a Pitocin drip.”
     • Xiomara Calle, business owner. “He said I had fibroids, many fibroids, and I needed to have surgery. This is my doctor of almost 30 years.” She thought she could trust him.
     • Sylvia Gill, living a full, vibrant life in Broxburn, UK, “There was nothing untoward inside, so everything looked okay? She nodded yes.” Her excised uterus and ovaries had been normal.

Indiana State Representative Bruce Borders is a fearless fighter for Hysterectomy Video Informed Consent. When Indiana legislators chose to hear testimony about puppy mills over the most important human rights issue ever to come before them, Rep. Borders challenged that they cared more about their pets than their own wives, mothers, sisters and daughters. The hearing on hysterectomy consent was reinstated. A gynecologist said to Rep. Borders and his wife Lola, just before her surgery, “Don’t worry, we’re taking away the cradle but the playpen will be as good as new”.

Genevieve Carminati, English Professor, Coordinator Women’s Studies Program and writer. When asked to use one word that is important to women to write about in a book to be given to legislators, she chose Uterus. "There are few words so distinctly related to woman. Yet we rarely use it unless we are describing something medical or an illness. It is not an attractive word, certainly not in the way it sounds, almost like a hawk, or something caustic, or a demand U TER US. It does not describe in the lilting way vagina does something precious, something lovely, something that is easy to claim. But the uterus is a vital organ, vital to the race. It’s the room that forms us all and nurtures our gestation, and it is vital to our being as women. To our quality of life, providing a center for so much of who and what we are.”

Robert E. Myers, Senior Trial Attorney and Medical Malpractice lawyer, “When you seek out an attorney for representation, an attorney is not a medical specialist. If you go to an attorney to talk about a possible medical negligence case, do all the research you can do about the medicine yourself. Write a chronology of what happened to you so the person who is a non-doctor can understand what happened to you…it’s not just the wrongful removal of an organ, it’s also how it affects the rest of your life. It’s difficult to just tell somebody – you’re walking around, there’s no scars, there’s no bleeding, you didn’t lose an arm, you didn’t lose a leg…that’s one of the most difficult things, not just to convince a lawyer, but you’ve got to convince a jury ultimately.”

During the final hour of the conference there was a lively discussion between the speakers and the attendees. Speakers answered questions they not address during their talks. There was animated discussion about how and why this unacceptable surgical abuse of women continues unrestricted in a civilized society.

At HERS unique conference every person had a voice, every woman, man and child.

Make your voice heard about the highly uncivilized and unacceptable practice of withholding information about the consequences of hysterectomy.

To order full conference and individual talks on DVD, email jkabak@hersfoundation.org or call 610.667.7757.

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35 Comments:

At July 15, 2010 at 11:09 PM , Anonymous Kim said...

Last Wednesday, I was in the pre-op area with my IV started, waiting to be taken back for a myomectomy, which I had to really push for. My doctor - a female - wanted to do a hysterectomy. Well, my Dr comes to see me before surgery, and says "I'm not going to do the myomectomy, I think it is the wrong procedure, fibroids are too large (15 cm and 9 cm) so let's just do a hysterectomy instead, since you aren't having more kids (I'm 42). I said, well now, wait a minute. I'm not sure I'm ready for that. (My instinct has ALWAYS been that a hysterectomy is not a good thing, and I would be so sorry if I did it.) So I asked her to give me a few minutes to think. When she stepped out of the room, I had the nurse remove my IV, and my husband and I got up and LEFT!! Thank God I followed my intuition!! So my problem is, I do have a lot of discomfort from such a large fibroid, but cannot for the life of me find a Dr. willing or capable of doing a myomectomy. Four doctor visits to 4 different doctors since last Wednesday, and EVERY ONE OF THEM says "oh, just get a hysterectomy"! One of them even said he would also remove my ovaries as a strictly preventative measure! I have absolutely no ovarian problems! Can you help me find a doctor in my area that can perform a myomectomy? I do need to have these bad boys removed, as they really are beginning to bother me alot. I am in the Houston area. I am so grateful and thankful to find you and your organization, and want to be a part of what you are doing to help women! Thank you.

 
At July 15, 2010 at 11:10 PM , Anonymous Kim said...

I am proud of my decision, and a little shaken up at how close I came to being butchered for the rest of my life! I want to be a part of helping other women. So many women are mislead, as you know, into thinking there are just no negative consequences. I asked my doctor last Wednesday, as she was wheeling me down the hall into surgery, if my hysterectomy would affect my sexual response in ANY way. She shrugged, rolled her eyes a little, and said na. Thanks, doc! Thank you again for your work, and I am reading your book, The H Word, right now! I'm about 1/2 way through, and can't put it down!!

 
At July 15, 2010 at 11:14 PM , Anonymous Philly said...

I had two large fibroids (and possibly two smaller ones). My symptoms were bothersome, including painful sex, severe cramps, urinary urgency and rectal pressure. I also had a previous unrelated surgery that left a large amount of scar tissue in my abdomen. Talking with HERS helped me make the decision to have a myomectomy. It was done as a laparoscopic procedure by a great suregeon (key!).

 
At July 16, 2010 at 1:15 AM , Anonymous Anonymous said...

Kim,
You need to contact Ms. Coffey for a referral. It would be worth it to travel out of town if necessary to get a myommectomy.

Mary

 
At July 16, 2010 at 3:28 PM , Anonymous Anonymous said...

I am glad you listened to your instinct. I had a Total Hysterrectomy in 2005 at the age 45because of heavy bleeding. Doctor tried D&C's every six months, ablation, freezing the uterus, with no positive results. He recommended Hysterrectomy. Since then my life has never been the same. Thrown into menopause, with no sex drive, a 50 lb weight gain, and clinical depression, I went from a young looking woman to an old hag. Please everyone, invest in research before you commit to this procedure. This is forever.

 
At July 16, 2010 at 3:39 PM , Blogger s said...

This comment has been removed by the author.

 
At July 16, 2010 at 4:59 PM , Anonymous Anonymous said...

Dear Kim,
In 2005 I had a myomectomy on an “inoperable”!?! (according to other doctors) 11 cm fibroid. It was done by Dr. Robert E. Varner (God bless him!!!) at University of Alabama at Birmingham Hospital. I feel like a million bucks, still have regular periods and absolutely no symptoms of menopause - I am 50!

 
At July 17, 2010 at 10:55 AM , Anonymous Mad as Hell said...

I'm so happy for those of you who were spared the horror of a hysterectomy.

And for you to have been so close, Kim. I only wish I had listened to my intuition before my ob/gyn of many years, Richard Muckerman, hysterectomized and castrated me for a benign cyst. Even though "his" oncologist recommended removal of only the one ovary, he proceeded to gut me at St. John's Mercy Medical Center in St. Louis.

The BIG mistake I made was TRUSTING this man!

I now know that I probably didn't even need to have my ovary removed but instead only the cyst (cystectomy).

It seems like most of these perpetrators don't even show their faces before surgery or at least until you're sedated enough to be "out of it" and helpless to flee. That's all part of the plan.

The other perpetrators and enablers were the nurses, anesthesiologists, graduate med students and the insurance company.

I want to thank all of you for spreading the word about the fraud of hysterectomy. For now, this is the only way to stop the "carnage."

 
At July 18, 2010 at 9:01 AM , Anonymous Charmaine said...

http://www.theaustralian.com.au/news/breaking-news/keyhole-hysterectomy-best-study/story-fn3dxity-1225893298340


This article just about made me cry.

Four years ago at the age of 47, I was manipulated into an unnecessary hysterectomy and removal of my left ovary as a "cure" for heavy periods.

I had fibroids and was offered no information at all about alternative treatments and/or the consequences of having my female organs surgically removed.

Since the surgery, I have suffered from back and abdominal pain, depression, bladder incontinence, loss of sexual libido, constipation and other bowel problems. I did not have these problems before the surgery.

How do we stop doctors like Brisbane gynaecological oncologist Professor Andreas Obermair from conning women into unnecessary hysterectomies?

Regards,

Charmaine Saunders

 
At July 18, 2010 at 1:17 PM , Anonymous Mad as Hell said...

Charmaine,

I'm so sorry you too were a victim of a greedy gynecologist. The U.S. has the highest rates of hysterectomy but the rates in the UK and Australia are way too high too. And, sadly, the Indian gyns have recently started drumming up business for hysterectomy. As we all know, the consequences of hysterectomy know no country or state boundaries. This should be a worldwide human rights issue! It is beyond sick!

Gynecology oncologist professor Obermair stated:

"Each year in Australia approximately 2000 women are diagnosed with uterine cancer and another 35,000 require a hysterectomy for other causes than cancer."

As we all know, Professor Obermair is a liar. Another 35,000 women do NOT require a hysterectomy. They only REQUIRE a hysterectomy if they have the WRONG doctor, one like him who performs unwarranted hysterectomies!

He also stated:

"As a surgeon it is enormously satisfying to offer a procedure that produces the same results in a much more effective way."

I'm sure it IS satisfying making all those $$$. I suspect it's easier to lure women into the Operating Room when you tell them their recovery time will be so much shorter. What you FAIL to tell them is that there is NO recovery from hysterectomy. In fact, not only is there NO recovery, our health deteriorates rapidly once the uterus and/or ovaries are removed.

So you're correct in stating that this procedure produces the same results. Regardless of HOW the uterus is removed, the result is the same in that it causes lifelong damage and increased health risks.

The world would be a much better place without you and your kind, Dr. Obermair!

 
At July 18, 2010 at 4:48 PM , Anonymous TQ said...

We stop doctors from continuing with the practice of the day, by supporting HERS in its efforts, everyway we can. As Nora mentioned in the clip from the conference, everyone must do everything they possible can to stop this. From attendance at the annual conference (especially the landmark one that took place this past April), to getting the 'H word" into the hands of your famly, friends, local library, etc., to educating yourself with the research amassed by HERS, or contacting HERS for their recommended action items. Doctor's have determined that their priority is in refining the process or technology for removal of the female organs. Women must decide that our health is our priority.

 
At July 18, 2010 at 8:49 PM , Anonymous Gracie said...

Kim, I applaud you for running out of the hospital. LUCKY YOU! I almost did that, but I really trusted my doctor, Dr. Jerome Gundersen, of La Crosse, WI, would do what was best for me. Was I wrong. It is obvious that your doctor did not know how to perform a myomectomy and used the excuse that your fibroids were too large.
I think all of us that has been affected by this surgery wished they would have left the operating table and ran out of the hospital.

I would really advise everyone who hasn't attended a HERS Conference to attend the next one. They are very informative and you will gain alot of good information that you will be able to use. Also, order the 'H Word' Book. Send one to your doctor with a letter stating how this surgery has affected your life and how he/she has destroyed about good about you. I did. You can get my email from HERS if you would like to look at my letter.

I will say it again. I don't understand why doctors think it is ok to remove a woman's sexual organs, but not ok to remove a man's gonads. There would be an out-cry if men were being castrated by the thousands like women are. What if doctors would say to a man, "Oh, just have your gonads removed. It is no big deal."

There is nothing good about this surgery unless you have CONFIRMED CANCER. You should never never have a hysterectomy for fibroids unless you have a doctor that don't value your sexual organs.

Please listen to the real expert. The woman like myself who has had a lifeless life since the surgery. This surgery will change everything about you; your health and well-being, your marriage, your social life, your children's lives, your career (most likely will end up losing your career), and your zest for life.

Why are women being multilated all for money? There is no other reason to hysterectomized and castrate a woman and alter her life forever.

 
At July 18, 2010 at 9:08 PM , Anonymous LuLu said...

Kim and Philly, I am glad that you two escaped. I wish that there was a chance that I could somehow become intact again. Being intact is a treasure far above rubies...
A sad commentary on our society that any young boy will know the value of being intact... but not a full grown woman.
While I am wishing here, I will also wish that I had been able to go to the HERS conference. It is the rare place where one can hear the truth.
Last but not least, the idea that the gyns deliberately distance themselves from the actual acts (in terms of a patient's consciousness) are well taken. The best book that I have read on this subject is Gyn/Ecology: The Metaethics of Radical Feminism by Mary Daly. but, be warned, Daly is at once intense, insightful, intelligent-- even as she identifies gender discrimination across the ages, across the globe.. as well as across the examining table.
To read the book's sources alone is quite an education in and of itself.

 
At July 19, 2010 at 9:04 AM , Anonymous Anonymous said...

My doctor of many years also told me I needed a hysterectomy. I left his office confused, but started to do my own research on the web and found several books on the subject, such as The Hysterectomy Hoax. What I found out made me determined not to have the operation. After some resistance I succeeded in getting my medical records and was shocked to see that he had lied in them! I went to two other doctors and both agreed that I did not need the surgery at the moment, however, one believed the lies in my medical records about my heavy bleeding, pain etc for months, (I had had ONE incident of spotting) and the other doctor believed me when I said the records were untrue. I was so puzzled when I read them that I actually thought he had got me mixed up with another patient. Since then, I have become much wiser and much more cynical. I realize now that he was falsifying my records probably to make a case for the insurance that I needed the surgery. I have stayed with the doctor who believed me, rather then the one who believed the fake records and seemed in awe of my doctor and kept telling me how wonderful he was. Another patient told me the doctor had been through a divorce and was remarried with small children, so I guess I was supposed to help finance his family. I would have probably continued to have some measure of faith in him if I had not seen the lies in my records. That showed me quite clearly that he knew there was no need for the surgery hence the reason to justify it with lies. When he spoke to me about it he gave me three benefits, no more bleeding, no worries about cancer, and my quality of life would improve. I asked him about the cons and he said there were none. That was two years ago and I have not got any worse. I do acupuncture and try to eat lots of greens and exercise and have not had any major problems with heavy bleeding. HERS was one of the sites that I looked at that made me feel there must be options if things got worse. All I know is that even if I have to end up having surgery, he will not get the benefit of the insurance payments because I will never go to a doctor who lies.

 
At July 21, 2010 at 9:38 PM , Anonymous Bibi said...

Wow Kim!!! Thank goodness you and your husband got up and left that Pre-Op room that day. You made my day reading and hearing your story. Yeah! How dare this doctor too, if this the case, to come in while you are in Pre-Op to announce to you the incredible change of plans. What a crazy GYN! You did not state if you had been given any kind of sedation yet, if any. What if you had been given something as, let's say 'Versed'? I have been give that before I went in to have spinal lumbar injections in my spine for a nerve disease I have. What a time anyway to come to you and your husband to state a change in a major surgery. I am beside about this, in itself. I hope you get the word out about this awful GYN in your area. If anything - if she had another direction to go with you; the whole 'thing' should have been cancelled that day, and certainly another time to discuss with her, not in a Pre-Op room. 'Disgusting' is putting it lightly.

I read the other comments here, and I related and had similar and have similar (symptoms) after my Hyst., and I concur with all here with comments made. I agree - this should be a "World Wide" issue to be addressed and stopped. Also the same with so many, and same case with me; i.e., being with a long time GYN and trusting this doctor. This was one of my huge mistakes. Plus, when will it sink in with doctors, and whoever that this would not be happening to males? When?! Why should women be any different? OMG, take a man's sex organs away (any)? How could any doctor do this?

 
At July 21, 2010 at 10:00 PM , Anonymous Bibi said...

(Cont'd.)

So, it is okay to sever/remove sex organs (for one) of a female, leave her fractured for the rest of her life; damage nerves, ligaments, tendons and leave her abdominal area prolapsed with also such a variety of complications thereafter? How dare these doctors get away with this and hospitals, etc., etc. (all involved) to devastate a woman's life in so many ways. My Hyst. has certainly "devastated" my life. It has financially, with my marriage (although - bless my husband's heart - he has stood by my side and supports me. He knows what goes on with me now is not my fault, but due to the Hyst. I had performed on me), with my two children (that is a whole other story with them; as they do not understand why their mother is not the same), and certainly physically and sexually. I too, personally, should have never had a Hyst. due to my having RSD (Reflex Sympathetic Dystrophy) a nerve disease where one who has it should avoid surgeries whenever possible. The GYN of mine knew I had this; yet, do you think he gave me any ideas of alternatives to avoid such a major surgery, not sever any further nerves and such? NO!!! I gave him lots and lots of info on this disease before the surgery also. He did not care, did he? He was out for the almighty dollar and power with his greediness. I am so sorry I did not know what I know now. I wish I would have removed that IV of mine in Pre-Op and ran with my husband out of the hospital, gown and all...

You take care, Kim. I hope you get directed to and find the right doctor to help you. You stick with your intuitions, gal. It sounds as if you have a loving and caring husband. Trust him too with his support, as long as he never tells you to reconsider having a Hyst.! It will, trust me, and tell him this - affect him. He can talk with my husband anytime. My husband can share how the Hyst. affected him, our children, and our lives.

Great comments, BTW - all the rest of you.

Take care all,

Bibi

 
At July 21, 2010 at 10:23 PM , Anonymous Bibi said...

Hi there,

I wanted to add one more important point; in that, if there are so many of us 'out there' with speaking of such SIMILAR AND SAME incidents, symptoms, problems, complications (just like not being told by our GYNs of the complications which arise from having a Hyst. and removing the ovaries also, besides the uterus, and NOT TOLD OF ALTERNATIVES TO SAVE OUR VITAL ORGANS AND THESE BEING IMPORTANT SEXUAL ORGANS - LIKE MEN), and there are truly millions of us; why has there not been something done to change this all, and one great start would be legislation put into effect to save women? When I think of this, I always refer, in my mind, back to womens' fight to earn the right to vote, and think of this... it was not that long ago this was finally achieved. It was less than 100 years ago! We were '2nd Class' human beings back then. We still are...

 
At July 21, 2010 at 10:35 PM , Anonymous Bibi said...

Ahhh, had to comment one more time. I forgot to comment on last Anon's comments. How awful you got "resistence" to get your med. records! What a farce. Well, I guess you figured out as part of the reason why, right?

When you spoke of the three benefits this doctor shared with you; I immediately thought of my GYN who spoke to my husband and I during one Pre-Op appt., and he looked at my husband when he said, "Think about it - no more bloody periods!" He, as I am saying, was looking at my husband, and he 'winked' at my husband when he stated this, along with a quirky smile on his face. I should have walked out of his office right then. Oh, I get upset I was so trusting and naive, and did not have the knowledge I do now.

Again, take care everyone. I encircle you all with huge hugs.

Bibi

 
At July 23, 2010 at 7:26 PM , Anonymous TQ said...

One more action item for stopping this practice - believing the victim.

Just as with any victimization, a woman isn't hysterectomized because she didn't do her research, stand up to her doctor, ask the "right" questions, ask any questions, because of her age, lack of trust in doctor, too much trust in doctor, or because a hysterectomy was necessary.

A woman can be hysterectomized, because doctors target and perform hysterectomy on women as a practice.

 
At July 23, 2010 at 8:43 PM , Anonymous Anonymous said...

The doctor who pressured me into an unnecessary hysterectomy referred to my "nasty uterus" as if it was some terrible disease ridden organ. It wasn't. I didn't have cancer. All I had were benign fibroids but I was led to believe that if I didn't have the surgery I would almost certainly hemorrhage and need life saving blood transfusions. After the surgery, my life was turned upside down. I couldn't stop crying. I wanted to end my life. When I sought medical help, I was told by one doctor "I have never come across another woman like you who has suffered depression after hysterectomy". He prescribed sleeping tablets after I had told him I had been having suicidal thoughts! Another doctor who prescribed very expensive bio-identical hormones said to me, "But surely you are glad you don't have periods anymore." His wife had had a hysterectomy in her 30s. When I rang the health department trying to find out how I could lodge a complaint against the doctor who had performed my unnecessary hysterectomy, the nurse who spoke to me said, "You don't need a uterus." The best thing that happened to me was finding HERS. It has put me in touch with other women who understood what I was going through. Up until then I had found no support at all.

Thank you.

Charmaine Saunders

 
At July 25, 2010 at 1:28 PM , Anonymous Anonymous said...

Does uterine cancer always require a hysterectomy?

 
At August 1, 2010 at 10:18 PM , Anonymous Anonymous said...

To Anonymous,
No, it defintiely does not! I recommend reading Dr. John Lee's books that addresses that issue.

 
At August 2, 2010 at 12:18 AM , Blogger HERS Foundation said...

Unfortunately, John Lee promotes hormones, particularly the ones he sells. He promotes the use of his progesterone yam cream to shrink fibroids, but in fact it makes them grow.

 
At December 8, 2010 at 1:23 AM , Anonymous Anonymous said...

Interesting that now they are saying more women are having hysterectomies in their 30s than older women. I would say these women have been scared into thinking that they have cervical cancer after an abnormal pap smear which is in the vast majority of times a false positive. Cervical cancer is rare. But women do not know that as the facts are not given to them. To make up for the fall in hysterectomy rates for women with fibroids, as women seek alternatives, doctors have now invented a new reason to have them: "abnormal" pap smears.

 
At January 18, 2011 at 1:56 PM , Anonymous Anonymous said...

Why suffer when you don't have to? I'm not sure why so much fear is placed in women's hearts over having a hysterectomy. I have to say I felt the same way before making the decision to have my own hysterectomy six months ago. I had suffered from multiple fibroids, hemorrhaging, severe headaches and anemia for over three years. I am 42 years old and my health had gone so far down hill that I felt like I was about 60. I had read this web site and listened to all the horror stories of why you shouldn't have a hysterectomy and convinced myself that I just had to live with it. Let me tell you---you don't and you shouldn't. First, I tried having an ablation but it was not successful. I was needing to get frequent d and c's as well. I was taking birth control pills and large doses of medroxyprogesterone and still could not stop my bleeding, which I learned after having my hysterectomy was actually hemorrhaging. This was much harder on my health than actually having the surgery. I did however, have to take large supplements of iron and bring my levels back up before having the surgery. Don't let yourself go through this torture...get your life back and move on and start living. If you feel anything like I did before and are going through what I did trust me, you will not regret having the surgery. I have starting running....never did it before, I feel great, have lost weight and feel like I did in my twenty's. I did keep my ovaries so keep looking for a doctor you feel comfortable with and feel is competent. I went through four doctors, prayed a lot about it but finally received peace about it and I am so glad to have my life back again....Don't let all of these nay sayers confuse you and convince you that you should just suffer through this. If you have tried everything else and nothing is working...consider the hysterectomy....You will be so glad when you make the decision. Good luck! And also, just to clear something else up...my intimate relationship with my husband has never been better...maybe that's because we can actually be together now...no...it does not affect your ability to enjoy intimacy....

 
At January 18, 2011 at 5:02 PM , Blogger HERS Foundation said...

It is unfortunate that you were not told that your fibroids could have been removed without removing your uterus. Regardless of the number and size of your fibroids, you could undergo a myomectomy, surgical removal of fibroids, leaving the uterus intact.

You never need a hysterectomy for fibroids unless you have the wrong doctor.

It is not surprising that progesterone and ablation did not stop your heavy menstrual bleeding. Progesterone, like estrogen, makes fibroids grow, and progesterone does not resolve heavy bleeding caused by a submucosal fibroid. Submucosal fibroids are in the inside, endometrial layer of the uterus. That is the only location of fibroids that causes heavy menstrual bleeding and large blood clots.

Endometrial ablation is a purely destructive surgery that does not treat fibroids, which caused the symptom of heavy bleeding.

You said that hysterectomy does not cause a loss of intimacy. Intimacy can be holding hands, hugging, etc, and of course women can still engage in that kind of "intimacy". But hysterectomized women cannot enjoy the physical pleasure and release of uterine contractions that occur during orgasm.

Women need to be informed about the physical anatomical functions of the female organs. Watch the short video "Female Anatomy: the Functions of the Female Organs" at www.hersfoundation.org/anatomy.

 
At January 18, 2011 at 5:37 PM , Anonymous Anonymous said...

I respect that you are trying to help women make informed decisions. That's a good thing...but they also need to know that hysterectomies are not always horror stories and there are people who are satisfied and happy with that decision as well. As I said, initially I felt the same way and did feel it was a last resort...It's impossible for me to go into all of the details of my treatments and treatment options but I did have consultation regarding a myomectomy and decided not to take that route....BTW my ablation was attempted but never performed so it was NOT the cause of the heavy bleeding. Also, ladies do need multiple opinions and need to make informed decisions no matter what they choose. I saw four different doctors before making my decision. As I said, I finally had a peace about it and still do and do not have any regrets! But yes ladies...watch the video, know your body and pray about what's right for you.

 
At February 6, 2011 at 6:12 PM , Anonymous TQ said...

What women need to take away from the video and the work of HERS is the importance of their reproductive organs and the permanent loss and damage after their removal. It matters not whether one accepts the aftermath of a situation that is now permanent. It maaters not how many opinions are sought if it only leads to the flawed conclusion of a "necessary" hysterectomy. It matters not how many ineffective treatments are endured so that hysterectomy is the only and final option. Women vitally need this information, so that they then demand more life-affirming options, understand the vitalness of their organs (so that one procedure is not simply swapped out for another), and expect more from health care than the removal of symptoms and to merely survive.

 
At April 21, 2011 at 1:55 AM , Anonymous Anonymous said...

The part I do not understand is the doctors fight to keep informed consent from us. I believe this speaks volumes as to their motives. It does not appear to be our health and well being! Our ignorance puts money in their pockets. If they truly cared about US they would be pushing to make informed consent a requirement. In EVERY office for EVERY woman. Enough said.

 
At April 21, 2011 at 2:07 AM , Anonymous Anonymous said...

Kim
I was not so lucky. I had 'No hysterectomy' on my admitting form. The doctor came into pre-op after I was gowned and IV'ed, with a new form 'Just in case I get in there and find out I have to do a total'. Feeling very pressured, I did sign this and, of course, woke up with everything removed. The pathology report showed a normal uterus. My life is no longer my life. I struggle daily. I am a shadow of the energetic, happy person I was. I had but a benign cyst on my right ovary.

I only wish I could do the same to him.

 
At March 17, 2012 at 7:04 PM , Anonymous Anonymous said...

Kim- I am in So. California and I found via google research two DRs experts in myomectomy -one is Dr. William H. Parker in Santa Monica http://www.fibroidsecondopinion.com
and Dr. Paul Indam in Los Gatos
http://www.egyn.com
They are out of Network but worth looking into. There is a lot of Information on their website including how to amend the contract you have to sign so that the surgeon agrees to not perform a hysterectomy while you are under the knife no matter what-- this is on Dr William Parker's website fibroidsecondopinion.com

How to amend the pre-op consent form to exclude a hysterectomy is also explained in one of Johanna Skilling's book either "The First Year of Fibroids" or Fibroids the complete guide..."
Dr Indam has reviews on Yelp. I also used Yelp.com and researched DRs and myomectomy in my area, that way at least you can get an idea if they have ever performed this surgery. All the best !

 
At March 17, 2012 at 7:54 PM , Blogger HERS Foundation said...

You can also contact HERS and email or fax the consent form to us and we will go over it line by line with you to modify the language on the consent they sent you, and add additional language that will give you more assurance. It is important to realize, however, that regardless of what the consent form says, a doctor can still remove your uterus and ovaries without your consent and in direct contravention to your expressed written wishes. Because the consent was modified, you have a better chance of winning a medical malpractice lawsuit, but the best of all worlds is to stay out of the operating room whenever possible.

 
At April 11, 2012 at 6:34 PM , Anonymous Maria said...

It's been 6.5 years for me, and if I could sue my doctor I would do it in a heartbeat. I was never told about all the issues I could possibly have, I was not given alternatives to consider, I was not given a website, a book, a pamphlet...ANYTHING to make a more informed decision. I've suffered trying to regain some semblance of my old self. I've gone through extreme depression, anxiety, insecurity and doubt...none of which was even remotely apart of my personality before the hysterectomy....I've gone through so many regimens that I've been denied health care twice! I could not hold my high paying sales position in a career I had for 17 years, and I'm now dealing with other health issues that I know are directly associated with the surgery. Needless to say I am furious. The doctor even talked me out of keeping one ovary for fear of cancer...yet, the odds of my getting breast cancer (it runs in my family) are much higher, but that didn't seem to even cross his mind when we were discussing this? Congrats to those who have found this sight and any others before you make the foolish decision I was talked into. In the last six months, I've finally reached a point where this may be my best ever since the surgery. I'm actually able to focus with an ADHD medication, I'm back to running about 15 miles a week..but have NOT had the endorphin high since that awful day. It doesn't matter if I run a half marathon...I feel nothing. The depression and anxiety are not debilitating, but I'm now dealing with what I think may be gall bladder issues. The pain in my upper right side has continued to get worse and more severe. Tests were done about a year ago and they couldn't find anything. My actual hope is that there was something left behind after the surgery so I can do something to this physician and mandate that women be informed before this butchering procedure. Since I'm getting stronger and can finally think straight, I'm able to research more and am finding SOOOOOO many women suffering the same plight. I will continue to talk to as many as I can about really, really investigating ALL options. thank you for the opportunity to vent. This is the start of my recovery in being able to read and learn about exactly what I've done and what the medical community is doing to women. Up till only a few months ago, I couldn't even face the word with feeling guilt and remorse for hurting my body...but I'm getting better and better everyday. Let's keep this movement going.
(Assigned Alias)

 
At January 2, 2013 at 9:38 AM , Anonymous Amanda said...

Bad doctors will always scam on the innocent, uneducated, and intimidated individual. Because of the way our medical society is structured, by capitalism, and a fake disciplinary board, money not decency will continue. Yes, we should all be outraged and stopping all medical abuse! Why hasn't medicine been taught in our schools from K through 12 always? Why aren't we all out protesting/picketing daily at every Dept. of Health within every state. I will! Doctors flat out lie. I do not believe in any results to their tests. I will always examine them thoroughly, digging and doing thorough comparisons. Recently, my two precious sisters were butchered on/hysterectomies and dead and I am investigating.

 
At January 26, 2013 at 12:59 PM , Anonymous Mad as Hell said...

Amanda,
Thank you for posting. So you had two sisters die during or shortly after hysterectomy? How awful!! I'm hoping your family can get a malpractice award. If you don't mind, please post on the current blog (depression after hysterectomy).

 

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