Friday, January 22, 2010

Public Hearing for Hysterectomy Informed Consent Law in Indianapolis on Monday!

Alert!! Last week Indiana State Representative, Bruce Borders, filed legislation for “Hysterectomy Informed Consent”.  This is a major step toward forging legislative change.  We need YOU there. Public testimony for and against House Bill 1366 will be heard at 10:30 a.m. on Monday, January 25th at the Indiana State Capitol in Indianapolis. The hospitals, ACOG and the AMA’s forces are gathering and their lobbyists are closing in on the legislators.

The reason we’re letting you know about this amazing development so late is because we just read about it in the newspaper last Monday. Rick Schweikert and I met with Rep. Borders last week to discuss HERS perspective on the issues.

Borders was motivated to introduce Hysterectomy Informed Consent legislation after his wife underwent a hysterectomy and removal of her ovaries without the information required for informed consent. Rep. Borders is determined to make sure that doctors will be required to provide every woman with HERS video “Female Anatomy: the Functions of the Female Organs”, at least 48 hours prior to being told to sign a Hysterectomy Consent Form so that every woman will have the information requisite to Hysterectomy Informed Consent.

Your attendance, regardless of whether you testify, is imperative. The larger the number of people attending the hearing, the stronger the message is to legislators that this is an issue of critical importance to you. Lobbyists have begun to wine and dine legislators to remind them of their contributions to their campaigns. Lobbyists are influential, but your vote is more powerful than their money.

We have just witnessed the power of the vote in Massachusetts.  On January 20th, 2010, the New York Times reported, “
By a decisive margin, Mr. Brown defeated Martha Coakley, the state’s attorney general, who had been considered a prohibitive favorite to win just over a month ago after she easily won the Democratic primary.” Whether or not this is the outcome you or I would have chosen, this demonstrated the higher power of the vote. It was not the usual outcome wrought by campaign funds, lobbyists, or history that prevailed. The voters of Massachusetts stunned the country, going against the tide, by making their voices heard with their votes.

This is your opportunity to make your voice heard about what was done to you, to women you know, to demonstrate that you will not stand silently by while women continue to be denied the information about the consequences of a surgery that damages another woman every minute of every day. Together we can take the first giant step toward stopping this from being done to the next generation of women and girls.

The 22 million living women who underwent hysterectomy without the information required for informed consent were not given the opportunity to decide what they would, and would not, allow to be done to their bodies.  Show your support for a woman’s right to full factual information about her body by attending and/or testifying at the hearing on January 25th.  Stand up for what you believe and be part of the solution.

Where: Room 156B, Indiana State Capitol in Indianapolis
When: Monday, January 25th at 10:30 a.m. EST
Contact: 610.667.7757

There are several hotels in downtown Indianapolis within walking distance of the Capitol, including the Hyatt, Marriott, Sheraton, and the Hilton Gardens Inn.




Nora

Nora W. Coffey, President
HERS Foundation



30 Comments:

At January 22, 2010 at 7:34 PM , Anonymous Mad as Hell said...

I applaud Rep. Borders for authoring this bill. However, after reading the text at http://www.in.gov/legislative/bills/2010/IN/IN1366.1.html, I was disappointed that informed consent as it relates to long-term adverse effects (aside from infertility) is not specifically addressed.

Hopefully, the following bill text is intended to address this:
"(d) The office of women's health (IC 16-19-13-2) shall adopt rules:
(1) to establish verbal and written informed consent procedures that must be obtained before the performance of a hysterectomy; and
(2) that indicate the medically accepted justifications for performance of a hysterectomy.

 
At January 22, 2010 at 11:48 PM , Blogger HERS Foundation said...

The bill itself has to be broad to be considered. The specifics of the effects of the surgery will be conveyed and documented by testimony at the hearing on January 25th. We hope you will be there to testify, Mad as Hell. Although they have given us almost no time to prepare and let people know about the hearing, it's very important for as many women and men to get there as possible.

We look forward to seeing you there.

 
At January 23, 2010 at 11:14 AM , Anonymous femica said...

ALL OUR BEST WISHES From Europe FOR MONDAY 25th Jnauary 2010 for the public hearing for Hysterectomy Informed Consent Law in Indianopolis!

We have got your Alert-
Hope that the legisalatives will be impressed by the testimony of concerned women and men. We hope so that many women would be able to come. We will think of you on Monday!The biggest problem is that so many concerned women stay silent in their harm!
Our best wishes for this important hearing!

femica
www.femica.at
support group for hysterectomized and oophorectomized women in the german spoken countries

 
At January 23, 2010 at 1:01 PM , Anonymous Anonymous said...

For those that cannot get to the hearing, I figure it can't hurt to email Indiana legislators about the effects of hysterectomy on your life and the lives of your loved ones (as well as society).

 
At January 24, 2010 at 6:21 AM , Anonymous Anonymous said...

Hello,

I always ask myself: How is education defined?
Alone satisfies the slightest suspicion of institutions to cut out and you really only need to give consent? Is it really so that it no longer conveys important information? Where does legitimate to bodily injury and where does it end? In Germany (35%), Austria, Holland and Switzerland will be a lot of surgery. Finland have rarely hysterectomies (9%).
But:
The Internet helps to engage and learn.
Because:
Only an informed woman has a choice.

All the best for the hearing.
Wish
Judith, Germany

 
At January 24, 2010 at 12:17 PM , Anonymous Anonymous said...

For those who cannot travel on such short notice- is there a way to contact these legislators?
Tex

 
At January 24, 2010 at 3:11 PM , Anonymous Mad as Hell said...

Here's a list of Legislators - http://www.in.gov/cgi-bin/legislative/contact/contact.pl. You can then click on the "Email your Legislator" link. Unfortunately, there doesn't appear to be a way to contact all Representatives at once. To contact by phone - (800) 382-9842.

This bill, House Bill 1366, was co-authored by Borders, Klinker, Dodge and Messmer so we know they already support it.

Hopefully, input from out-of-state women will be considered.

 
At January 25, 2010 at 11:32 AM , Anonymous nuzki said...

Mad as Hell….

Hello, I am and have been angry over my LAVH since April of 2005. I just read the alert yesterday for I have been having some computer problems. First of all, I so wish I would have seen this on Friday for I may have found some way to be there to give my testimony and stand up and have my voice heard. Not just for myself but for all of us woman who have suffered in one way or another. I am outside of Madison, so it wouldn’t have been that far of a drive. Just late notice, and lack of funds to drive there.

I haven’t been as active as I would have liked to be on bringing more awareness to the HERS foundation on the consequences of a hysterectomy and the alternatives due to many personal stressors. However, I do what I can here and there by emailing out the HERS link, you tube video link and distributing the pamphlets. And have sent the book to the woman who took my uterus. I try to get on the blog site as I can. This is still a very painful subject for me almost five years later. I have suffered many effects from this very un-necessary surgery. More have come up as time has passed.

Thank you Mad as Hell for explaining the Bill and to the Hers foundation also for its explanation. I was a bit confused on it. I thought someone may have the info here on the blog site. I also thank you for listing the link to legislatures that we can contact.

However, when I type in the link an error message continues to comes up. I will try it several ways. I think I have just found the list for Senators in Madison which I have heard of one that maybe interested in supporting the HERS Foundation. At the moment I cannot remember her name. I will look further into this as I have time and as long as my computer continues to work. My friend pointed her out when I mentioned I may need someone at a legislative level in Madison on a personal issue. I sure hope it doesn’t come to that. That is one of my stressors among many.

I hope you were able to make it to Indianapolis. They are in my thoughts and wishing them all the very best. I wish I was a fly on the wall in that courtroom.

Thank you,
Janie in Wisconsin.

 
At January 26, 2010 at 7:29 PM , Anonymous Mad as Hell said...

nuzki,

I was not able to go to the hearing but I emailed all 100 Representatives (except the four bill authors/co-authors). Since it didn't appear that there was a way to email all of them at once, I had to send each one separately through the the IN government website. It took just a little over one hour. Not being from Indiana, I'm not sure that my story will carry any weight but I did start my letter by saying that the effects of hysterectomy know no state boundaries. Here's the contact list:
http://www.in.gov/cgi-bin/legislative/contact/contact.pl.In case this link gets truncated, you can get to it by going to www.in.gov, click on General Assembly, click on Contact your Legislator, Click on Email Address. A list of all Representatives and Senators will come up and you can then click on Email your Legislator.

I have written to my state's legislators and plan to write to the state Attorney General as most cases of hysterectomy are fraud and should be handled as such.

P.S. My TAH/BSO was just one year after yours and I also struggle with all the adverse effects. I too will continue to fight to end this atrocity. (BTW, we exchanged emails awhile back.)

 
At January 27, 2010 at 2:04 PM , Anonymous Nuzki said...

Hi, Mad as hell,

I didn’t get an email notice that there was a reply to this blog. So not sure what is going on.
Either it is a problem with my email or the site. I usually do get a notice.

I have been told by others that they had sent an email to me and I simply didn’t get it. As I said, I have been having many problems with my laptop, which makes it difficult at times besides very frustrating.

I am sorry that you weren’t able to make it to the hearing either. I am curious to know what exactly occurred during the hearing and how many were able to make it with short notice.

That is wonderful news that you were able to send out an email to all of those representatives. I do admire your persistence. Thank you for telling me another way to pull up the link. I really want to be more involved and this Absurb operation that has ruined so many woman's life's.

I have had so many personal and health issues, so please forgive me but I don’t have your email address. I do have a new email addy for AOL and Vista just didn’t cooperate when I did the SP1 update. That is what has caused many problems on this laptop. Not sure which one you have, so I included it on the bottom of this reply.

I am sorry that you are suffering as well, it just never seems to end. I am and have been having extreme emotional and physical problems since my LAVH. Plus, the many traumatic events that have taken place in my life since then have just added on more stressors to my life. I am not the same woman at all that I was before I entered that operating room. I wrote some poetry that I did post on this blog site long ago.

Some days it is just plain difficult for me and I wonder how I am still breathing. I feel very isolated and alone. I told one good friend I do have today, that I wish I can take all that has happened to me and put it in a basket throwing into a river so this nightmare would end already.

With all these problems overwhelming me, I can only do what I can for now to try to get my voice heard here and there.

I do feel crippled..

My best & thanks again,
Janie at nuzki@ymail.com

 
At January 30, 2010 at 1:16 AM , Blogger RNMomof5 said...

To Nuzki,
The only thing we can do is band together in whatever way we can. Perhaps Rep. Borders wife was the straw that broke the camels back,or the lightning rod that will spark a national awareness on this huge problem. Together, by speaking out whenever & whereever we can & finding strength in numbers is what will eventually help this national disaster abate. I am so sorry for your loss. I am a nurse & I should have known better, but I trusted my physician to be honest & truthful with me. Sadly, to my lifelong regret I have lost many things.

 
At January 30, 2010 at 9:36 AM , Anonymous RNMomof5 said...

Okay, well someone is paying attention, I find it odd that of the many physicians I have spoken to none of them have said anything about a loss of sexuality, yet in the LA Times, Parade section of the Sunday paper 2 weeks ago, there was this 1/2 page ad that says,
"Do you miss that LOVING FEELING?"

"A Hysterectomy can affect your sexual desire."

"If you're a woman at least 30 years of age, have had a hysterectomy and are experiencing a decrease in sexual desire, you meay qualify for a medical research study. The study will evaluate LibiGel, an investigational medication for Hypoactive Sexual Desire Disorder (HSDD)" [Wow, I'm impressed someone now has a name for it with initials]

"Local study physicians are enrolling participants now.

-All study-related care is provided at no cost
-Financial compensation may be provided


It says it is sponsored by BioSante Pharmaceuticals.

I find this interesting that there is a magic gel that will give back what they took away with our uterus.

Has anyone else heard anything about this?

 
At January 30, 2010 at 1:42 PM , Anonymous Anonymous said...

RNMomof5,

I'm sorry that you were victimized by someone in your profession. As stated by HERS, nurses are the #2 victims of hysterectomy (doctors' wives are #1).

The LibiGel (testosterone gel) clinical trial is called the Bloom Study and is just another way that hysterectomized women are exploited by the medical and pharmaceutical industries for their financial gain.

Interestingly, the website http://www.bloomstudy.com/ doesn't mention hysterectomy. It states "if you're a woman at least 30 years of age, have gone through menopause or had your ovaries removed, and are experiencing a decrease in sexual desire..."

We know that many women who've had their uterus removed with ovaries left in place also experience a loss of sexual desire (libido) and sexual response. At least the ad you saw in Parade magazine acknowledged loss of sexual desire post-hysterectomy; most media do not. Hopefully, many intact women saw this ad and will be forewarned.

The Bloom Study website goes on to say "...discuss the possible risks and benefits of your participation. This information will also be provided in writing in an “Informed Consent Document” that you will review and sign."

Since no woman was provided with the information requisite for "informed consent" for hysterectomy and/or ovary removal, I personally am suspicious of getting "informed consent" related to any medical treatment or procedure or pharmaceutical drug.

However, as women that are desperate for any improvement in the symptoms resulting from hysterectomy and/or castration, we must each make our own decision regarding pharmaceutical hormones and/or supplements.

 
At January 30, 2010 at 4:16 PM , Anonymous Anonymous said...

I wonder if the blog above is a gynecologist, or a synthetic hormone company representative writing to undermind this website. Pharmaceutical hormones are death to women! Beware!

To say you are "personally suspicious of getting "informed consent" related to any medical treatment or procedure" shows you do not support the Hersfoundation and are writing to undermind it's effort to educate women. Why don't you take your stupid comments someplace else!

 
At January 30, 2010 at 5:21 PM , Anonymous Anonymous said...

The previous poster said:

"To say you are "personally suspicious of getting "informed consent" related to any medical treatment or procedure" shows you do not support the Hersfoundation and are writing to undermind it's effort to educate women."

My response:

I obviously was not clear in my previous post. I should have said that I'm "personally suspicious of getting informed consent from medical professionals and pharmaceutical companies..."

Contrary to your comment, I support HERS and have made several sizable donations since my hysterectomy and castration. I'm also quite active on message boards, forums and blogs warning women of the devastating aftermath of hysterectomy and urging them to go to the HERS website and contact HERS for a consultation.

 
At January 30, 2010 at 10:54 PM , Blogger HERS Foundation said...

Everyone!

Please read the blog guidelines at the top of the page. Anonymous comments make it difficult to follow who said what, and what they're responding to, so please use an alias if you prefer not to use your name.

Please be civil. You can disagree with a comment and tell people what you think and feel without calling them names, like stupid.

Thank you!

 
At January 31, 2010 at 1:43 AM , Anonymous rnmomof5 said...

I learned the hard way that I have to reach out & learn myself. What is difficult is when the information out there is bogus. Then again physicians saying they have never had patients telling them the severe after effects women have had post hysterectomy,I realize I still have not been able to look that physician in the face and tell her how devastating it was to me, I did however tell the nurse practitioner who herself had a hysterectomy 6 weeks previously. I can only surmise she hadn't had enough time to experience the differences.

I appreciated the 1st anonymous comment regarding being duped by my own profession. It wasn't until my husband did internet research when I told him I felt they had "broken" me during the hysterectomy, it was the only way I could describe the changes. My body simply did not work as it used to.

Regarding the "informed consent" issue & if health practioners really practice it, they are supposed to tell you of every possible side effect no matter how small. But mine didn't even bother to mention the biggest obvious ones. So I would also be leary to believe the information a pharmeceurical company would give.

However with the bloom study, I would give anything for them to do a back up study with comparing women with no ovaries, to those with only one, or both, but have had their uterus removed. I think it would further validate the responses HERS foundation compiled.

I would be leary of taking hormones as well, but what if this "libigel" did help? And I didn't utilize something that would help even in a small way.

I understand "bio identical hormones" are not supposed to be as harmful as whatever other hormones are used.

But each of us needs to seek out the information on our own. I would love to have a magic gel or pill that helped give back something I was unknowingly robbed of.

 
At January 31, 2010 at 8:28 AM , Anonymous Samantha said...

rnmomof5,
I hope you will give bio-identical hormones a try. Please try to seek out a good bio-identical hormone doctor and see if they can help you decrease the symptoms post-hysterectomy. I do not know where you live, but there are good doctors around. Suzanne Somers has a reference list of good bio-identical doctors in some of her books - maybe that could help you. I know they have helped me and I will never live without them. I tried Provera and had a horrible time but do not any issues with the bio-identical. I think many gynecologists are getting compensated by the company that makes Provera and the other synethetic drugs and they "educate" the doctors on what to think and not think. Money talks and the doctors listen. It has become a big money-making racket. Horses are abused and women are also being abused while the big company that makes provera gets richer and richer every year!

 
At January 31, 2010 at 8:59 AM , Blogger HERS Foundation said...

About hormones,

If what you put into your body by way of a pill, patch, injection, implant or gel, has a hormonal effect, you are at risk for the same adverse effects of hormones made by large pharmaceutical companies like Wyeth and Eli Lilly.

For example, I was given estrogen and testosterone implants by Robert Greenblatt in Augusta GA after I was hysterectomized and castrated by Robert Giuntolli at the University of Pennsylvania Hospital in Philadelphia. Greenblatt assured me that the implant was safe because it was not oral, and therefore would not affect my liver. I asked several times, as most of us who were told there were no adverse effects of hysterectomy are apt to do, and was told emphatically NO!

For example, as a result of the testosterone I developed a serious, irreversible blood disorder, thickening of my vocal cords that prevents projection of my voice, and facial hair. Although I immediately stopped all use of testosterone, the effects are permanent.

HERS has counseled many women who developed other serious problems from taking bioidentical hormones, such as breast cancer, blood clots, and stroke.

HERS suggests that women become fully informed of the known risks and adverse effects of taking hormones, whether they be so-called natural, or whether they are produced by a major pharmaceutical company. Although it's not always obvious, many of the individuals, including some high profile actors, and castrated women who have written books, now promote and sell bioidentical hormones and other products. They have found a gold mine in the pockets of desperate-to-feel-better women.

As too many of us know, a possibly life-altering decision without full, accurate information can have life-long consequences. When you are informed about the known risks and alleged benefits, you may decide that's a risk you're willing to take.

HERS supports women being given the information they require to make fully informed decisions.

Nora W. Coffey

 
At February 1, 2010 at 6:15 AM , Anonymous Mary said...

It sounds like you were given synthetic hormones. I wouldn't trust the doctors that did your hysterectomy either. The bio-identical hormones are plant-based and do not derive from horse urine. They are absolutely not the same, but you are entitled to your opinion. You definitely had a typical bad experience with synthetic hormones.

 
At February 1, 2010 at 6:25 AM , Blogger HERS Foundation said...

Mary, I tried every hormone on the market, including pharmaceutical, bioidentical, plant based, and compounded. Most drugs are made from plants. Testosterone, which caused the serious problems I experienced, was compounded by a pharmacy. The only hormone extracted from a pregnant mare's urine is the estrogen Premarin.

Regardless of it's origin, if a substance has a hormonal effect, you are exposed to the same risks. Which is not to say that anyone shouldn't try whatever they think might give them some relief of symptoms, but they should be informed of the risks.

 
At February 15, 2010 at 2:06 PM , Anonymous nuzki said...

Hi Rnmomof5,
Three times to get this to go through.

I just had a chance today to get back to the blog site. Thank you for posting a message to me. I do have a few things to say here if I have a chance later on.. I have been reading some information sent to me by a friend that so far, from what I read, may help us woman who have lost custody or have only partial custody of our children. This is an extremely painful subject for me. I also have a few things, I feel I need to say on this blog site. Let’s just say to clear the air. Whether anyone really cares or not, it doesn’t matter. But to me it does.

I am sorry that you have lost so much in your life as well. WE all lost in one way or the other. I highly agree with you that just maybe Rep. Borders wife is the straw that finally broke the camels back. We do have to band together across the U.S. joining hands to get that “HAVE LAW” passed in whatever way we possibly can. Wouldn’t it be great if all us women who have been victimized could actually stand out on the streets hand in hand, state to state? All wearing shirts supporting the HERS Foundation, the HAVE LAW simply letting everyone know that we are not going to stand for this any longer? I can visualize this in my head.

I have quite a few thoughts, ideas, actually pages written in a notebook if only other stressors in my life would take a vacation and I can get some sleep for once in my life. PLEASE NOTE WHAT I POST LATER IF I CAN GET TO IT. Thanks…

I do write poetry and have written some articles that were published regarding one personal stressor. When I put my mind to it, as a few of those friends told me, I can write. Depending, it really can take the time for me to write. Sadly, these friends don’t live close to me.

I only have one good friend Norah has spoken with.
It was him talking to her that really got through to me on what I was and still am going through. I so wish I could have been in Indianapolis to give my testimony. It would also have been such an honor to “FINALLY” meet Norah, Irene, and Rick. I feel as well that in some small way, it may have helped me to meet some of the other woman who have been a victim of this deplorable surgery. I feel so isolated here and really have been through hell and back.

As you may have read, I have been having computer problems on and off. At times I will admit, it is very difficult for me to read some of the blogs. It deeply saddens me.

However, when I have time, maybe later today, or sometime this week, I will post one of two writes I have sent out via email to a few people pertaining to a couple personal issues. I also will post that link my one dear friend found for me. From what I have read so far, it just may help a few of us. I know I am one who is really having a difficult time with this issue.

Like I have mentioned, I also feel I need to clear something up.

I do wish you the very best. I still need to update or make a new account on here for I can’t get to my profile since I had to delete AOL. Hopefully, in the near future I will get this straightened out.

Thank you & best wishes,
Janie outside Madison WI

 
At July 22, 2011 at 6:04 PM , Anonymous givemeabreak said...

you all are crazy, women are free to deny and investigate anything that their doctors suggest. hysterectomy has saved million of lives and let women live free from pain. as you dont know i will tell you the mind is the most important sedxual organ. if you dont want a hysterectomy dont get one. but dont make it illegal and immoral for those of us who do oor did

 
At July 22, 2011 at 6:13 PM , Blogger HERS Foundation said...

Actually, many women are not free to deny hysterectomy because they were told that they were going to have diagnostic surgery only, and numerous others were told that only fibroids or an ovarian cyst would be removed. They did not consent to removal of their female organs. Still other women are outright lied to, they are told that have or probably have cancer, when they do not have cancer. Most women ask excellent questions, but they have no way of knowing if the answers they get are true. That's why they went to an "expert". Women should not have to go to medical school and study gynecology to not be surgically abused by a gynecologist.

HERS supports legislation to make hysterectomy without the information required for informed consent illegal. This is an informed consent issue.

Hysterectomy and castration have ruined, not saved, millions of women's lives. Rarely is hysterectomy a life saving surgery.

 
At July 22, 2011 at 6:16 PM , Blogger HERS Foundation said...

givemeabreak, why are you so angry toward women who tell the truth about the effects of hysterectomy?

 
At March 31, 2012 at 7:26 PM , Anonymous Leslie said...

I would sleep better at night if you could at least post why some hysterectomies ARE necessary. I have a hereditary condition called Lynch Syndrome that causes its subjects to acquire AGGRESSIVE cancers at a VERY young age. My hysterectomy saved MY LIFE! I have gained weight and I am looking for some online information about how to lose it, when I stumbled upon your blog. All I can say is, SHAME ON YOU! I agree, hysterectomies have been a quick fix in the past; however, with Lynch Syndrome being Autosomal Dominant, leaving each subject to a 50% chance of acquiring it from their parents, would scream that this condition is far more pervasive than ANYONE truly knows and WILL require its female patients to have radical hysterectomies if they want to live, as ovarian cancer CANNOT be detected until it's in the latter stages, thus resulting in a death sentence.

 
At March 31, 2012 at 7:43 PM , Blogger HERS Foundation said...

Leslie, The link you provided shows a small number of people who have Lynch Syndrome will die from cancer. The highest risk of cancer from Lynch Syndrome is colon cancer. It also increases the risk of endometrial cancer. Endometrial cancer is preceded by endometrial hyperplasia, which is a slow growing and treatable so that it rarely develops into endometrial cancer. Unless you are morbidly obese, it takes 10-12 years for endometrial hyperplasia to develop into endometrial cancer, so there an ultrasound performed once a year will show if there is a thickening of the endometrium. If there is, a D&C will remove the thickened tissue, and progesterone will help keep the endometrium from becoming thick again.

If you were going to have a preventative surgery, it would make the most sense to have your colon removed. It is illogical and unwarranted to remove the female organs when the risk of cancer with Lynch Syndrome is not in the female organs.

The link that you provided, http://lynchcancers.com/index.php?option=com_content&view=article&id=4&Itemid=4, states:

"Not all persons diagnosed with Lynch syndrome get cancer. As well, many others develop polyps which are removed by colonoscopy or other intervention before they become cancerous. Besides protecting our children and generations to come, the benefit of diagnosis is the ability to obtain annual testing for cancer, called surveillance testing, which may be lifesaving. So, to answer the question, there is not only treatment through resection (removal of cancers and affected organs) chemotherapy and radiation, but there is also a system of annual testing, which if utilized correctly, growths are removed prior to becoming cancerous!"

They are not urging removal of any organs. Your fears are unfortunate, but perhaps if you reread the information you sent you find assurance that there is no need to recommend that women have their female organs removed for a family history of Lynch Syndrome.

We wish you the best, and hope that you will share the link you shared with HERS, rather than your fears, with other women.

 
At April 11, 2012 at 2:41 PM , Anonymous Chloe said...

Hello ladies:
It's too late for me I already had a hysterectomy, cervix and one ovary taken out. But if you have the funds and health care to cover the costs you might want to check out this doctor in southern ca. I did not have either so had to fly to Mexico for my total hysterectomy. I had researched him before my crisis of hemorrhaging in Jan. 2012.

50 yr old white female: More about me under the Elizabeth Taylor blog section on this site. Look for "Chloe."
Thanks,
Chloe

 
At August 6, 2012 at 12:05 PM , Anonymous Joyce said...

It is too late for me, too.

I am too weak and exhausted to be able to write my whole tragic story, striving each day to survive but I will try.

Five years have passed since my deceitful needless hysterectomy for PROFIT; beside the insurance money for the hospital, the operating gyn /SHE/ demanded an extra generous payment in advance (it's the usual practice in Poland when a patient wants to be treated better).
SHE had taken all possible advantages of me in order to manipulate me into signing the UN-INFORMED "Consent": of my poor medical knowledge, fears, a desire to have a child and first of all, my TRUST. Before the surgery, she was so friendly, caring, warm and understanding, like "a mother" to me. Now I know it was just her tactics to build my trust in her.
I was damaged for life and deprived of my uterus due to one fibroid, no anemia, childless, forty.

On my check-up visit, SHE persuaded me into miomectomy. She assured me it was better to have it done now, with this size of a fibroid, and I would never be afraid in the future of losing my uterus. No information about the side effects of the abdominal hysterectomy, written or verbal, because there was NO reason to talk about it. "Prophilactic miomectomy" is obviously something else.
One day before the scheduled surgery, I changed my mind, of course... but unfortunately, I went to the doctors' room to inform them about it. There they did NOT take NO for an answer...
They threatened me with the fatal consequences of not having the surgery and how 'dangerous' my fibroid is if I will not have it removed..'. They made me stay...

The next day I woke up deprived of my uterus. SHE came to my bed and 'apologised'... SHE explained that SHE 'had to remove my uterus because I was bleeding too much during miomectomy, unsuccessful, and SHE 'saved my life'. I was also told that 'it is so beneficial because I will never develop cancer there'.

SHE kept the money SHE had taken for my 'miomectomy'.

I could have lived just as well with my heavy menstruation, it was NOT life-threatening at all.

My life has become a nightmare. Needles to describe, some women here will know how I may be 'feeling'. Anxiety, blood pressure problems, heart palpitations.
I completely lost my sexuality, I have been extremely depressed, on pills, out of work, urinary and sexual handicap.

After two years of torture - of trying to keep my relationship, I begged my husband for separation but he has been my helper and a friend. Without his moral and emotional support, I would not survive one day.

The hospital and doctors there are UNTOUCHABLES, when I tried to sue them, they threatened me with a psychiatric hospital. I was told, 'you are the only one with so many
problems after the all-curing hysterectomy, it's all in your
head ..., fix your head, you have the ovaries left so you are not castrated and you will not have sooner menopause or dryness', and lots of other gibberish crap I heard.

There are women after hysterectomy who claim to feel better, or Ok, or
still having 'mind-blowing orgasms' ?

I/m sorry, hard to believe. Are they improving and protecting their
self-image or are they just the people hired and paid for it on the
'medical websites' that are marketing hysterectomy business?

If there are women who feel great after the hysterectomy, why are they so eager to visit the post-hysterectomy blogs, a year, five, ten... or more after..., in order to convince others or themselves? that everything is so fine...?

 
At December 9, 2012 at 10:27 AM , Blogger HERS Foundation said...

Joyce,

I am so sorry for what a gynecologist did to you. We can and will stop this. Do not believe that it cannot be stopped. Look at the progress that HERS has made in 30 short years. Changing something that historically has been going on for centuries takes time, perseverance, funds and the support and efforts of thousands of people.

There is so much that you can do to change this for the next generation of women and girls. Please call me at HERS at 610.667.7757 to discuss what you can do to be part of the solution. The efforts of every single woman and man to change is powerful. We have the power, we need to own it and not accept the surgical and medical abuse of women. Your choice to keep your uterus was taken away from you. You have a choice now, to be part of the solution, or part of the problem. If you choose to be part of the solution HERS and I will work with you to stop this unacceptable abuse of women.

Nora Coffey
HERS Founation, President

 

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