The Hysterectomy Epidemic: Where’s the Outrage?
September 12, 2011 by Frances Cerra Whittelsey · 15 Comments
After a year spent interviewing women for a book about unnecessary hysterectomies and oophorectomies (the medical term for ovary amputations), I am dismayed that despite many medical alternatives to hysterectomy, so many American women are still losing their organs. About 600,000 women a year undergo hysterectomies in the U.S., the second most common surgery, surpassed only by cesareans.
Dr. Mitchell Levine, a Boston-area OBGYN who specializes in removing fibroids while leaving the uterus intact, says that 90 percent of hysterectomies are avoidable and manageable with other alternatives. His opinion is based on the fact that a finding of cancer is responsible for only about 10 percent of hysterectomies.
True, some women who elect to have hysterectomies do not agree that cancer is the only valid reason. Kathleen, for example, told me she had suffered for years from fibroids and endometriosis, a condition in which uterine cells grow outside the uterus and react to monthly cycles. Kathleen was practically disabled for three days every month, and got no relief from a variety of other treatments. She finally had surgery to remove her uterus and all the wayward cells, but kept her ovaries and cervix. She feels better now than she has in years.
But other estimates of the rate of unnecessary hysterectomies allow for women like Kathleen and are still shockingly high. An expert panel looked into the issue in 2000 as part of the Women’s Health and Hysterectomy Project, conducted by a branch of the U.S. Department of Health and Human Services. The panel developed its own criteria for when hysterectomy was appropriate and also considered criteria set by the American Congress of Obstetricians and Gynecologists (ACOG). Their findings: 70 percent of the hysterectomies were recommended inappropriately according to their criteria, and 76 percent didn’t meet the criteria of the ACOG.
Using the 70 percent estimate, a staggering 420,000 women every year might be able to avoid a hysterectomy. And since half these women usually lose their ovaries, 210,000 could avoid the additional threat to their health that is the consequence of that loss. (Of the 210,000 whose ovaries are conserved, somewhere between 15 and 30 percent lose ovarian function anyway.)
I would argue that what’s partly responsible for this epidemic of unnecessary surgery is the sexist attitude that the uterus and ovaries are strictly reproductive organs, essentially useless after child bearing. In fact, they are sex organs, and removing them brings about sudden, and irreversible changes to their sex lives and puts them at greater risk for heart disease and heart attack, early death, dementia, osteoporosis and incontinence, with the degree of added risk depending on a woman’s age at the time of surgery. These risks come as a surprise to most women because most gynecologists continue to offer hysterectomy as the routine, standard, unremarkable cure for problems such as fibroids (non-cancerous tumors), heavy menstrual bleeding and endometriosis. It is shocking that this continues after decades of research and development of alternative procedures, including one of the oldest, removal of the fibroids only.
Women react with horror to clitoridectomies because of the savagery of the cutting and because they know it means a life-long loss of pleasure. But so do hysterectomies. Many, although not all women, feel their orgasms in their uteruses. When that organ is gone, they will never enjoy that intensity of feeling again. I know because I did enjoy such orgasms, a whole-body rush with my uterus rhythmically contracting. I now realize with regret that I could have avoided that loss with surgery to simply remove the tumors. My female gynecologist led me to believe there was no alternative. I was in my early 40’s; the average age of women undergoing hysterectomy is 42.
Can you imagine men reacting calmly to loss of feeling in their sex organs? What would they do after they learn that the loss could have been avoided? Or how about suggesting to a man that because he’s had all his children, he might as well have his testicles removed to avoid the slim chance of testicular cancer? Do you think doctors would dare make that suggestion? Yet women I’ve interviewed say their doctors use fear of rare ovarian cancer to justify removal of healthy ovaries. Lacking good information about the actual risks, they often consent.
In fact, if you want to survive until old age, hold on to your ovaries. Dr. William Parker, clinical professor at the University of California at Los Angeles School of Medicine, lead a study of almost 30,000 women followed for 24 years to compare what happened to those who had a hysterectomy but kept their ovaries with those who had both a hysterectomy and bilateral oophorectomy.
Using data from this landmark Nurses Health Study, he found that women who had their ovaries removed had a higher risk of early death from any cause than women who did not, primarily from heart disease and lung cancer. “For every 24 women having bilateral oophorectomy (removal of both ovaries), at least one woman will die prematurely from any cause as a result of the oophorectomy,” the study concluded. “…at no age was oophorectomy associated with a survival benefit.” Over the 24 years, 686 women died from coronary heart disease and lung cancer, while just 37 died from ovarian cancer. Furthermore, he calculated, if you start with two hypothetical groups of 10,000 women, and one group retains their ovaries while the other does not, 858 more women will die in the group without their ovaries before the age of 80. In the group that kept their ovaries, only 47 women will have died from ovarian cancer.
Why the result? The ovaries of post-menopausal women continue to deliver small amounts of hormones that are essential to a woman’s health, including testosterone. Testosterone maintains a woman’s sex drive and bone strength and gives her energy. How many marriages founder because women who’ve lost their ovaries suddenly lose interest in sex? The question has not been adequately studied.
Making matters worse is the horror show of symptoms caused by the “surgical menopause” that is induced by oophorectomy (or by hysterectomy, in the cases in which it causes ovaries to fail). The list includes severe hot flashes, sleeplessness, irritability, depression and even suicidal impulses. And in the long run, surgical menopause channels women into continuing and costly treatment for these symptoms—all avoidable by leaving women in their natural state.
Feminist concern about unnecessary hysterectomies is muted, at best. Top feminist health concerns include abortion rights, unnecessary cesareans, breast cancer, insurance coverage for birth control and campaigning to end the practice of clitoridectomy. All overshadow the issue of unnecessary hysterectomies. Perhaps part of the reason is age: Except for breast cancer, these top concerns primarily affect women under 40.
Yes, there are many women who are passionate about the subject of unnecessary hysterectomy. You can find them burning with regret and outrage on the website of the HERS Foundation, whose president, Nora Coffey, has dedicated nearly 30 years of her life to stopping, or at least slowing down, the epidemic of unnecessary hysterectomies–with disappointing results.
Coffey resorted to a year-long picketing campaign at major hospitals in cities around the U.S., distributing leaflets and holding signs of protest along with women who had contacted her through HERS. In her book about the experience, The H Word, Coffey describes the many women who turned away from her on those street corners, avoiding discussion about their own or others’ hysterectomies. Of course, there were some people who gave thumbs up of support, and men who immediately told stories about mothers or wives whose health and well-being had suffered after the surgery; but these were in the minority.
In this climate of budget cutting, the silence about hysterectomy is even more astounding. No one involved in the health care system debate has advocated lowering the rate of hysterectomies and oophorectomies as a way to save billions of health care dollars. Besides reducing the number of women with life-threatening conditions like heart disease and osteoporosis, fewer hysterectomies would also mean fewer older women getting costly, long-term treatment for the back, bowel and incontinence problems that plague them.
Yet, in my extensive research, I have found no one who even attempted to work the numbers to see how much could be saved, not health economists at big universities or anyone in the federal government.
Carolyn Maloney, the Democrat U.S. Representative from Manhattan, once suggested she might ask the Government Accountability Office to do such an estimate but she backed off that commitment when I pressed her about it. Yet she had called out in a speech, “Where is the outrage?” to the women assembled at a meeting of HERS where I met Dr. Levine. She told that audience that she was warned off an oophorectomy by learning the facts about its consequences. She was grateful for the save, but not sufficiently to use her power to shine a spotlight on the issue.
It’s time for hysterectomy to become a feminist issue. It’s time to ask ourselves why we give up our sex organs so easily. Why are we willing to wear 5-inch heels, to bleach, shave, starve, decorate, lift, implant, glue and lace ourselves into sexy versions of ourselves—while we meekly give up sexual pleasure? And then shut up about the consequences to our health?
It’s time we had compassion for the women who have yet to face this potentially unnecessary pain. Our sexuality is diminished, our health endangered by hysterectomy and ooophorectomy. It’s time to call these operations by their rightful name—castration—and to say no, this will not continue.
Picture from Flickr user Stephanie Costa under Creative Commons 2.0.
Sadly there are very few reasonable alternatives to hysterectomy for women with uterine fibroids that are causing debilitating pain and bleeding. Hormone therapy causes side effects,IUDs can cause additional bleeding other therapies require repeat treatments requiring additional medical visits and more side effects. However there is no reason for a woman electing hysterectomy for this problem to have her ovaries removed as part of the procedure. In addition, there is no reason a woman should need to have a completely invasive procedure, there are now centers who can perform the surgery using minimally invasive techniques reducing surgical risk and decreasing recovery time. Clearly education for patients and providers as well as additionalresearch into women’s health are needed to improve outcomes and prevent this epidemic of unnecessary and extreme treatment.
There is a very good alternative to hysterectomy for fibroids: removing them and leaving the uterus behind (myomectomy). Dr. Levine, mentioned in this article, says he can always remove only the fibroids, and he proved it recently with a woman I know who had suffered from them for years. He removed 10 fibroids and left her uterus intact. Most gynos, sadly, are not capable of this. Few are skillful enough or never learned in the first place, so you have to search for one like Dr. Levine. Sometimes, fibroids do recur, if the woman doesn’t reach menopause soon enough, but the risk is worthwhile to keep this essential organ.
Actually, even doctors that are skilled enough to perform myomectomies still choose to do hysterectomies. I interviewed Dr. Stanley West for my documentary The Stranger Within: Fibroid Stories and he informed me that he has trained thousands of Doctors to perform myomectomies and they still turn around and do hysterctomies because it is financially more advantageous to do so. Imagine a doctor who has sworn to “never do harm” deciding to forego myomectomies in favor of hysterectomies because they can perform more of the later in a day.
Where is the outrage, indeed. Hysterectomy is castration. But it takes more than anger to unravel the complexities of the uterus and healthy human reproduction. I endured years of fibroids and the quality of life consequences that I know drive many individuals to the surgeon in the face of seemingly so few options and the understandable desire to just be done with it all.
It took me an amazing amount of research and perseverance to find a way to address my condition and avoid castration which I was determined was no solution at all.
Hysterectomy is an issue of critical importance to all women. Thousands of women, men and children joined me every day for a year at HERS nationwide protest against unconsented, unwarranted and unwanted hysterectomies. It was an amazing, empowering experience.
Before HERS founding in 1982 the word hysterectomy was rarely spoken. HERS has educated the country about what and where the female organs are, what their functions are, and the consequences of removing the female organs. HERS is working with legislators to create a law that will compel doctors to provide women with HERS Female Anatomy video (watch the video at http://www.hersfoundation.org/anatomy) at least two weeks before they are told to sign a form consenting to hysterectomy. New York representative Carolyn Maloney (D) is outspoken in support of an informed consent law in New York. Far from backing down, she has remained a staunch supporter of human rights, civil rights and women’s rights, including the right of women to be fully informed of the consequences of hysterectomy. Congresswoman Maloney was the Keynote Speaker at HERS 2010 Hysterectomy Conference in New York. To hear Maloney’s position, in her own words, in support of hysterectomy informed consent for every woman, watch the trailer at http://www.hersfoundation.org.
Excellent article! Thank you Frances for speaking continuing to speak out about this barbaric mutilation of women. Most women do not know or understand that removal of their ovaries is ‘castration’. And, even when women know what removal of their ovaries would mean and they elect to keep them; they wake up to find they’ve been removed anyway. Each organ that is amputated/removed pays the physician removing them more money. For women who do not understand how horrific it is to have to live in a ‘castrated state’; I would suggest thinking about a 1985 Supreme Court ruling in order to better understand how devastating hysterectomy and castration truly is. In 1985, the U.S. Supreme Court ruled that it constitutes ‘cruel and unusual punishment’ to surgically castrate convicted rapists and child molesters. Yet, as Frances pointed out in her article, over half a million women are hysterectomized and castrated each year in the U.S. The sheer number of women being ‘de-sexed’ each year is absolute proof that they are not being told the true consequences of hysterectomy.
There is no way that over half a million women each year are purposely signing up for the life-long list of devastating consequences of hysterectomy. For more information on the consequences of hysterectomy and the study conducted by William Parker M.D. mentioned in the above article, visit http://www.hysterectomyconsequences.com
As a man now with no testicles following an accident I can agree that removing ovaries fits the definition of castration. Please understand, though, that being ball-less is not being in a state of de-sexed; with hormone replacement therapy most men who have undergone bilateral orchiectomy (removal of both testicles) can feel desire and get and maintain erections. I assume that women who have has ovaries will find similar relief from HRT.
That said, the visible result of castration – having an “empty sack” is something I had to get used to. To date I haven’t wanted to get near a surgery in order to either have my scrotum removed or have prosthetic testicles inserted.
I do empathize with women on this issue – it does sound as if not as much diligence is applied to finding a non-surgical alternative for women as there is for men who face being ball-less.
Sadly, women who have suffered the most serious impact on their sex lives from removal of their ovaries say there is no HRT cocktail that restores them to anything close to “normal.” And, HRT is particularly dangerous for women with any factors that put them at higher than the usual risk of breast cancer. No–the solution is not HRT or new drugs. It is to put a stop to removal of healthy ovaries.
This is an excellent, though, all too rare, “Wake up, America!” article… Frances hits the nail on the head when she notes how feminists have largely overlooked the critical issues of unnecessary hysterectomy and ovary removal. Further precise hammering blows are dealt when she notes that, despite ever escalating healthcare costs as well as subsequent substanial efforts at containment of those costs, it seems that few are truly serious about addressing something so massively, and, grievously, done unnecessarily.
To me, the article’s accompanying picture gives ample substance to the old adage, “A picture is worth a thousand words!”
In my opinion, America, it turns out that your best medical advocate isn’t a doctor, a feminist, the media, a drug company, or, even a lawmaker, but, it is… “YOU!” And YOU should always consider pulling your own medical records, doing your own research… As for a starter? I highly recommend the brief, yet, highly educational female anatomy video found at the non profit, http://www.hersfoundation.org
Agreed, great article Frances!
The unreasonableness surrounding hysterectomy is striking:
- to assume their is an actual need for hysterectomies at the epidemic levels that are currently in practice
- to continually prescribe ineffective treatments for benign and non-life threatening female conditions; and then say hysterectomy is necessary or the only option
- to tell women on the one hand to do their research, speak to their doctors, know their options and then not publicly provide the anatomical facts of the female organs so women are informed and aware of the anatomical affects
- to presume that the removal of uterine and/or ovarian functions is a health restoring strategy
- to coin the term “surgical menopause” to denote the abnormal state created by surgical removal of the uterus given that women in “normal” menopause retain uterine/ovarian functions
- to justify a surgical procedure that can only impair health simply for the removal of benign symptoms
- to box women into a no-win situation between ineffective treatments and health impairing surgery as the only two options
Forgot one more, it is unreasonable to think this is about what women are choosing for themselves – it’s about what’s being done to women.
Lastly, it is unreasonable to equate the anguish over the lifetime suffering of women after unnecessary uterine removal as “passionate”; but such a term is never used in reference to the doctor’s “passionate” and epidemic, unrestrained practice of uterine removal.
HERS has been successful in reaching women and raising awareness on this issue, examples can be seen here:
“The tide is turning”
http://hysterectomyinformation.blogspot.com
Thank you for this article on the devastating affects of castration to women. I agree that if doctors referred to it as “castration” .. which is precisely what it is … there would be less women harmed. A huge study by Mayo Clinic also connected ovarian removal before age 45 to be linked to alzheimer’s disease and parkinson’s..both neurological. We need to get this information out!!
This just wont end…..To add to the multiple ‘medical reasons’ to castrate and mutilate a woman…now we have genetic testing…..Very fear inducing.
I was diagnosed with Breast Cancer and consented to genetic testing. I tested positive for the BRCA 2 gene which gives me up to a 27% chance of ovarian cancer.
One month later I am without any sex organs, short of my clitoris,one shortened vagina, one breast and my brain (which is becoming less interested in sex).
How did this happen. I was told:
You should of had this surgery 8 years ago.
You could have ovarian cancer and not know it. It is the silent killer and most patient are diagnosed at stage III or IV.
I probably wont feel any different without my ovaries since I am 53 years old.
With exception of not having a uterine orgasm, sex will be the same. And some think sex is better after hysterectomy.
Regarding any long term effects….”Nothing we cant fix”.
Now that I realize what I gave up, I feel stupid for having been so weak and falling for their fear mongering. The ‘gyn-onc’ let me walk right into the fire and suggested I have the ‘Clean Sweep’ and then she chuckled….
I confronted her after I found out she misquoted my risks. She hung her head and said “I wish I had not taken your uterus.” How can a doctor take an organ and later fully understand that the removal of that organ was not warranted. It is criminal..But they get by with it every day. My only purpose in life is to see that she gets some justice, either my our legal system (probably not going to happen) or by life and bad karma……
What can we do to stop this?
Vicki
THE OUTRAGE IS RIGHT HERE!!! *points at herself* My mom has been considering this surgery and now I’m making her read this article.