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!

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.

HERS Honored With Women's Way Award

Amid the applause of 1,100 guests, the Women's Way 32nd Annual Powerful Voice Awards were presented in Philadelphia on May 6, 2009. The awards honored the accomplishments of Women Organized Against Rape (WOAR) Director Teresa White, community organizer and HIV/AIDS awareness advocate Waheedah Shabazz-El, and women's rights advocate and activist, Hysterectomy Educational Resources and Services (HERS) Foundation President Nora W. Coffey.

Women's Way Executive Director Melissa Weiler Gerber says of the award, it "serves as a call to action to women everywhere, encouraging us to increase women's influence in the media and make a difference in the community."

Women's Way is the first major women's organization to publicly acknowledge the importance of educating women about the damaging effects of hysterectomy and the lifelong functions of the female organs. The award is recognition that hysterectomy is one of the most serious health issues facing women today. As demonstrated in Nora's book THE H WORD, co-authored by Rick Schweikert, the hysterectomy rate is on the rise, and every woman with a uterus is at risk.

Women's Way presented HERS with an excellent opportunity to talk about the issues, but the award presenter was a pharmaceutical company representative. Nora's first thought was, "I can't accept an award presented by someone from the industry." HERS is an independent women's health education organization with a policy of not accepting support from the medical industry.

"Because there was no opportunity to address this issue publicly at the banquet," Nora said, "in keeping with HERS' mandate of education, I presented a copy of THE H WORD to the pharmaceutical rep as she handed me the award. That way, she could educate herself and her pharma colleagues about these issues."

Since 1977, Women's Way has been the country's oldest and largest women's funding federation. This award brings into focus the imperative to provide women with the information required for hysterectomy informed consent.

We welcome any ideas you might have about getting exposure for HERS and THE H WORD. Each time someone reads the book, it's another person who has been educated about these issues and someone who may educate others and join us in changing the law. Each time the book is in the media, in a bookstore, on a blog, or on a library shelf, the number of people who have access to this vital information is magnified many times over.

This is an opportunity to put hysterectomy information into the hands of those who need it...to save a girl, to save a woman, to save a family. To prevent hysterectomy from becoming the legacy of another generation of women and girls.

Fraud and Hysterectomy

Fraud in the inducement is a legal term used to describe a scenario where one person has tricked or deceived another into a harmful situation they would not have entered into if they had known they would be harmed.

In the example of hysterectomy, a woman is induced into signing a consent form under the guise that she needs the surgery, there are no alternatives to hysterectomy, and she may die without it. But that is rarely the case. She is also induced into signing the consent form by being told she will be "better than ever after the surgery," or that she will be a "new woman." She is then drugged, strapped to a table, and her female organs are removed, because of erroneous information supplied by the inducers. 

No woman is unharmed or undamaged by the removal of her female organs, but that is really not the point. The point is, women who are provided with the information required for informed consent, such as the information provided in the HERS video "Female Anatomy: the Functions of the Female Organs," decide against undergoing hysterectomy. 

As we make clear in our book The H Word: What gynecology doesn't want you to know about 100 years of hysterectomy and female castration in America, whether the surgery might be one of the 2% that are lifesaving or not is irrelevant. It's every woman's right to know the information that is requisite to informed consent prior to being asked to sign a hysterectomy consent form, whether she has a mere annoyance or a true health problem.

Fraud in the inducement for hysterectomy requires proof that 1) a false statement of material fact was made, 2) the doctor/hospital knew or should have known the material fact was false, 3) the false statement induced the woman into signing the consent form, and 4) the hysterectomy caused injury to the woman who relied on the misrepresentation as fact. 

False statements of material fact on medical websites are more the standard than the exception. A survey of doctor, government health agency, and hospital websites demonstrates that not only do doctors remove sex organs without providing the information required for informed consent, the information they do provide is often erroneous and unsupported by anatomical fact, as was confirmed on the blog post, "Hysterectomy and Female Castration: the Enablers Part II." Most of the false statements are authored by doctors and hospitals that claim to be sources of medical expertise, who should know that the information they publish runs contrary to anatomical fact. Women are encouraged to use this information to make a decision about hysterectomy. The adverse effects then cause injury to more than 621,000 women in the U.S. each year. 

For more on this subject, see the article "Sanctioned Violence Against Women," published in The Women's International Perspective (The Wip).  

We are interested to hear how your experience with hysterectomy fits the four requirements above for fraud in the inducement. Would you take part in a class action lawsuit against doctors and "patient education" institutions that supplied the erroneous information used to induce you to sign a hysterectomy consent form?

Please be brief in your comments about how your experience fits the four legal requirements of fraud in the inducement. 

Seeing The Uterus and Ovaries is Believing.

If the female sex organs were visible like the male sex organs, would they still be removed from 622,000 women each year?

Myth: "Only men have gonads."

Fact:  A woman's gonads are her ovaries. Removal of the ovaries is castration, and the aftereffects are to women what the aftereffects of removal of the testicles are to men.

Myth:  "Sex will be better than ever after hysterectomy."

Fact:  Removal of the uterus causes the loss of uterine orgasm, one of the many irreversible consequences of hysterectomy.   

Myth:  "After the surgery you'll feel better than ever, and sex will be the same or better."

Fact:  The most common problems women report after hysterectomy include loss of sexual feeling, loss of vitality, bone/joint/muscle pain, fatigue, and personality change.

Myth:  "Doctors don't perform as many hysterectomies as they used to."

Fact:  Less than 2% of all hysterectomies are life-saving. Most hysterectomies are performed for benign conditions, not medical problems. The rate of cancer in the female sex organs and the male sex organs is almost identical. The rate of male sex organ removal is statistically insignificant, and yet in the last decade an average of 622,000 hysterectomies and 454,000 female castrations were performed each year in the U.S. That's more than one every minute of every hour of every day.. There are 22 million women alive today in America whose sex organs have been removed. 

Myth:  "Doctors don't have enough time to provide information about female anatomy and the functions of the female organs before they tell women to sign hysterectomy consent forms." 

Fact:  It takes just a few seconds for doctors to hand women HERS' 12-minute "Female Anatomy: the Functions of the Female Organs DVD, available at www.hersfoundation.org/anatomy. And that's good news. HERS' 12-minute female anatomy DVD makes the female organs visible. It fills the information gap and can prevent about 610,000 unwarranted hysterectomies and 622,000 hysterectomies performed without the information required for consent each year, which would save more than $17B dollars a year in rising medical costs. 

Tell us what you were told about the life-long consequences of hysterectomy.

Removal of one or both ovaries increases incidence of cognitive loss

HERS Foundation said...
This article is soon to be published in the Journal 'Neurology'. Many hysterectomized and castrated women experience memory problems that began after the surgery. Because they are often ridiculed by doctors for connecting their memory problems to their surgery their concerns and experiences are often trivialized by family and friends.

The Real Experts have been telling the so-called medical experts for a century that castration causes memory loss and impaired cognitive function. Doctors tell them their memory loss is because they have a relationship problem with a partner, family or friends. They tell them taking hormones is the remedy. And they tell them they have memory loss because the are depressed.

The loss of memory results in a profound loss of self and identity. Competent, intelligent, dynamic women suddenly have difficulty finding the common ordinary words they know as well as their own names. Thoughts run around the edge of their brains, unable to be retrieved. Most women characterize this tremendous loss as irritating, frustrating, and terrifying. The thing that I always find incredible is the way so many women have learned to cope with this loss by compensating. Sometimes it's a facile changing subject, or with a laugh, "oh, you know what I mean". Sometimes it's like charades. "It's green, it's wood, it has a back, and you sit on it." All the while she's trying to be pleasant and not show how foolish it feels to play a game to get others to guess what is in her head.

Women who experience these problems can use this article to help family and friends understand what is so difficult to comprehend and accept, particularly because it is denied by gynecologists who perform the surgery. Acknowledging the problems caused by hysterectomy is not good for business. Kudos to the authors.

Increased risk of cognitive impairment
or dementia in women who underwent
oophorectomy before menopause

W.A. Rocca, MD, MPH
J.H. Bower, MD
D.M. Maraganore, MD
J.E. Ahlskog, PhD, MD
B.R. Grossardt, MS
M. de Andrade, PhD
L.J. Melton III, MD, MPH
ABSTRACT
Objective: There is increasing laboratory evidence for a neuroprotective effect of estrogen; however,
the clinical and epidemiologic evidence remains limited and conflicting. We studied the association
of oophorectomy performed before the onset of menopause with the risk of subsequent cognitive impairment or dementia.

Methods: We included all women who underwent unilateral or bilateral oophorectomy before the
onset of menopause for a non-cancer indication while residing in Olmsted County, MN, from 1950
through 1987. Each member of the oophorectomy cohort was matched by age to a referent woman from the same population who had not undergone oophorectomy. In total, we studied 813 women with unilateral oophorectomy, 676 women with bilateral oophorectomy, and 1,472 referent
women. Women were followed through death or end of study using either direct or proxy
interviews.

Results: Women who underwent either unilateral or bilateral oophorectomy before the onset of
menopause had an increased risk of cognitive impairment or dementia compared to referent
women (hazard ratio [HR] 1.46;95%CI 1.13 to 1.90; adjusted for education, type of interview, and history of depression). The risk increased with younger age at oophorectomy (test for linear
trend; adjusted p 0.0001). These associations were similar regardless of the indication for the
oophorectomy, and for women who underwent unilateral or bilateral oophorectomy considered
separately.

Conclusions: Both unilateral and bilateral oophorectomy preceding the onset of menopause are associated with an increased risk of cognitive impairment or dementia. The effect is age-dependent and suggests a critical age window for neuroprotection. Neurology® 2007;69:1074–1083

Fibroids: you never need a hysterectomy for fibroids

The most common reason hysterectomy is performed is for fibroids. Most fibroids don't cause any symptoms and rarely cause a true medical problem. But if you had symptoms that were more than annoying, if they really impacted your ability to function, there would be no reason to undergo a hysterectomy. If you are told that a hysterectomy is your only choice to treat symptomatic fibroids, find another doctor who has the skill to perform a myomectomy, and who will respect your decision to choose the treatment that you think will be best for you. It's your body, you always have the right to refuse treatment.

Here is basic fibroid information that can help you decide if what you have is a true medical problem or if it's really a nuisance.

Fibroids are benign growths of muscle and connective tissue that grow until you reach menopause. Then they slowly and gradually shrink to a negligible size, at which time they will become small and calcified. Less than 1% of fibroids are cancer, a leiomyosarcoma.

The average size of the uterus including fibroids in the late thirties to early forties is a ten to twelve week pregnancy size (about 13cm in the largest dimension), in the middle forties fourteen to sixteen weeks is average (about 17cm in the largest dimension), and in the late forties to early fifties eighteen to twenty weeks is average (about 21cm in the largest dimension).
Fibroids have two rapid growth spurts that are natural, predictable, and not a cause for alarm. The first rapid growth spurt is in the late thirties to early forties. Then you have a few years of slower growth. Right before you go through menopause, when you have the hormone changes associated with the beginning of menopause, you have the second and last rapid growth spurt. Then the fibroids slowly and gradually shrink to a negligible size.

You develop all of the new fibroids you are going to have in your 30's you do not develop new fibroids in your 40's. Both estrogens and progesterone stimulate fibroid growth. Many women use the so called "natural" progesterone yam cream that promoters claim shrinks fibroids, but in fact it makes them grow.

Fibroids are not a disease, they are your genetic blueprint. If you can live with the symptoms it would probably be better than unnecessary intervention of any kind. If you cannot live with the symptoms a myomectomy, the surgical removal of fibroids leaving the uterus intact, is a reasonable option. Even in the case of leiomyosarcoma, some women choose myomectomy, if the leiomyosarcoma is in the wall of the uterus, and not attached to a ligament.

If a doctor tells you that it can't be done because you have too many fibroids or that your uterus is too large it just means they don't have the skill, and that you need a doctor that does have the skill. Fibroids that cause heavy bleeding with large blood clots are submucosal, they are in the endometrium, the inside layer of the uterus. A submucosal fibroid that is 4cm or cm or smaller can be removed hysteroscopically. A hysteroscope, a long tube, is inserted into the vagina, into the cervix, and into the uterus. A tool is attached to it, and the surgeon chips away at the fibroid until nothing remains but the shell. If the submucosal fibroid is larger than 4cm you would need a myomectomy. A horizontal incision would be made above the pubic bone, and the fibroid would be dissected out of the uterus. Fibroids in other locations do not cause heavy menstrual bleeding or large blood clots.

Although there are many other treatments for fibroids, such as uterine artery embolizaiton (UAE, also called UFE), endometrial ablation, focused ultrasound, myolisis, and Lupron to shrink them, they are all destructive. The only constructive treatment for fibroids is myomectomy, but only if you're in the hands of a skilled gynecologist who has consistently good outcomes. A good outcome from myomectomy means you came out of the operating room with an intact uterus, you were not given a blood transfusion, and you did not have a new medical problem that you did not have before the myomectomy.