An "Essential" Guide to Hysterectomy That Isn't

The title, Women's Hysterectomy Stories:  The Essential Guide," gave me great expectations. Here, available on line for $17, was an e-book that I thought might help to enlighten women about the perils to their long-term health and sexuality from hysterectomies.

So, I sprung for the $17. And was sorry that I did.

This book, written by Ruth Steeves and promoted on her website, Hysterectomyresources.com, is only for you if you've already made up your mind that you really need a hysterectomy. It will advise you about making arrangements in advance of your surgery for child care, and meals, and what to expect in the hospital, and once you get home.

But just like HysterSisters, which is promoting the daVinci robotic system for the surgery, this book and Steeves' website see the epidemic of hysterectomies through rose-colored glasses. The goal is to eliminate your anxiety about having a hysterectomy.  The furthest they go in bucking the medical establishment is to encourage women to get a second opinion.

HysterSisters has actually launched a "Give Me a Second" campaign whose purpose is "to strengthen the doctor-patient relationship, to improve women's quality of care through awareness of minimally invasive surgical procedures (italics mine) and to increase confidence in their healthcare decisions."

Once again, it's all about finding a doctor who will use laparoscopy or robots for a less traumatic hysterectomy. Not to avoid one altogether and survive with your organs intact.

The problem with the generic advice to get a second opinion is that too many gynecologists disregard all the evidence about the serious after-effects of hysterectomy and removal of the ovaries and won't volunteer any information about them. These are not side-effects--like an infection due to the surgery--but long-term adverse impacts on health and sexual pleasure.

Without a uterus, a woman can not experience what some refer to as a full-body orgasm in which the uterus pulses rthymically. That is not an opinion. It's an incontrovertible fact, but the gynecologist who will warn you about that is a rare individual. You also won't hear about your increased risk of future bladder and back problems, or about your much higher risk of heart attack if your ovaries are removed. There's no controversy at all about these after-effects of hysterectomy. The evidence has been reported in medical journal articles repeatedly over the last several decades.

Yet, to justify the supposed joy of hysterectomy, The Essential Guide  tells one anonymous woman's tale of painful periods ever since she had her first, and her gloriously wonderful life after hysterectomy.

Other than that one, there are only three other stories included as MP3 downloads or PDFs. One of the women had uterine cancer (an absolutely valid and unavoidable reason for a hysterectomy); another had to be on blood thinners for another condition and this had serious effects on her periods (how common is that one? and who knows what alternatives she had?); and the third said she had "passed out" every time she got her period. Again, thankfully, not a common experience. All end up as testimonials for Steeves' book.

That said, yes indeed, women should get second opinions. And third and fourth, if need be, until they find a doctor whose practice is focused on avoiding hysterectomies, not doing them. Some medical centers now have specific hysterectomy alternatives centers. Search for them. But first, arm yourself for these discussions by learning about the anatomy of our reproductive organs and the essential role they play in our health and pleasure for as long as we are alive.

To get that information, I once again recommend the HERS Foundation website where you can watch a plain vanilla explanation, with diagrams but not any sort of bloody video, of the functions of your uterus and organs. You'll be grateful for investing 10 minutes of your time to save your future health and pleasure.



 

Websites Exploit Women Worried About Hysterectomy

There they are on the home page of Hystersisters.com: five attractive women, all dressed in white and smiling broadly. Why are these women so happy? They've had a hysterectomy--and obviously enjoyed it!

Yes, if you believe the claims on both Hystersisters and Hysterectomyresources.com, having your uterus removed--and likely your ovaries as well--can not only be anxiety-free but also a happy, happy experience.

If you do believe that, as we say in New York, there's a bridge in Brooklyn we'd like to sell you.

Selling, of course, is what both these websites are about. Selling you not on the idea that most hysterectomies--as many as 90%--can and should be avoided because they are so damaging to women's health. No, not that. Instead, both websites are trying to sell you on a different type of hysterectomy, and preferably, in the case of Hystersisters, one done with the daVinci robotic system.

The convenient Find-a-Doctor feature on that website is sponsored by...you guessed it, daVinci!

Intuitive Surgical, Inc., the company that makes the daVinci systems, is bullish on its future. The company's investor relations website reports that for the first half of 2010 revenue was up 49% from the first half of last year to $679 million.

This company's intensive public relations and advertising campaign--I've seen their press releases turned into glowing news stories by naive reporters in several newspapers--is all about getting hospitals to buy the robotic systems for a sweet $1 million to $2.3 million each.

And the revenue stream just goes on from there. Annual service agreement: between $100,000 and $180,000. Disposable instruments and accessories for each procedure: between $1,300 and $2,200.

Is it any wonder that medical costs in this country are impoverishing us?

The websites are a fabulously clever way of putting pressure on doctors and hospitals to buy the systems.

Women who've been told they need/should have a hysterectomy run to their computers for information.

And what they find at Hystersisters is designed to prompt them to ask their doctors--themselves getting pitched by Intuitive sales people--if they use the robotic systems. It's push-pull marketing at its best.

But pushing daVinci isn't the only thing wrong with these two websites, as I'll explain in my next blog in a few days.

In the meantime, any women who's considering a hysterectomy should go to the HERS Foundation website to get the cold, hard facts about the serious health problems and loss of sexuality that the surgery too often brings about.

Video Consent Requirement May Be the Only Way to Stop Hysterectomy Epidemic

In this second report on the HERS conference, I want to focus on the push to require that women see an informative video before consenting to a hysterectomy.

The HERS Foundation has produced such a video and is hoping for legislative action. But even a proposal to require women to read more about the effects of the procedure before consenting, introduced this year by Indiana legislator, Bruce Borders, (seen here outside the conference room with keynote speaker, U.S. Rep. Carolyn Maloney) has prompted surprising opposition. Of course gynecologists objected, but so did the Indiana chapter of the American Civil Liberties Union.

The women who attended the conference were perplexed by this opposition. Many had told stories all day long of being victimized by doctors who not only failed to inform them about alternatives to losing their uteruses and ovaries, but lied about the benefits of the surgery. Why, the women wondered, would a civil liberties organization oppose an effort to truly empower women with enough information to make an informed decision?

After all, it's not as if it's news that too many women are losing their organs unnecessarily. This effort has been going on for decades. As I've pointed out in earlier blogs, the toll on women's sex lives and health is major, and for many, devastating. Women whose fibroids or bleeding or endometriosis could be treated without removing any of their organs get talked into a hysterectomy. Believing they have no other option, they consent to surgery to remove their uterus--which itself diminishes their sex lives and has other adverse effects--and often wake up to find that their doctor has gratuitously taken out their ovaries, too.

How can this be stopped? With about 600,000 women undergoing hysterectomies every year, what will it take to bring that number down significantly? After 28 years of counseling women, Nora Coffey, who founded HERS, believes required viewing of a video before consent may be the only way.

At the conference, Coffey said she had tried to have a conversation with a woman at the Indiana ACLU about her objections to the Indiana proposal, but had instead been on the receiving end of a loud scolding.

So, I decided to see if I could make sense of the objection, and found this explanation, written by VP, Legislation, Joan Laskowski, in the Spring, 2010 newsletter of the Indiana ACLU:

"Although civil liberty requires informed consent for medical procedures, this bill mandates ideologically inspired information that a woman must certify having read and understood, including risks, discomforts, irreversibility and resulting infertility...This simply parallels for conception the 'informed consent' requirements for abortion and compromises dignity and autonomy protected by reproductive liberty." (Bold face mine.)

Get it? What's disturbing the folks at the Indiana ACLU is the similarity of requiring women seeking abortions to view a video (or jump other hurdles) with efforts to prevent avoidable hysterectomies.

Laskowski, who did not return phone calls seeking comment, seems to be mistakenly assuming that the intent of hysterectomy information is to ensure that women stay fertile, to make sure they can still get pregnant. Note the word "conception" in her commentary.

This argument, of course, first of all ignores the reality that the only real concern most gynecologists have about cutting out a woman's organs is whether she still wants to have babies.

But the fundamental flaw in Laskowski's thinking is that she seems to have reflexively decided that because the form of these consent laws is the same for abortion and hysterectomy that both violate women's dignity and civil rights.

She fails to understand--or perhaps believe--that women are not fully informed by their doctors about the consequences of hysterectomy. This despite testimony at a hearing on the Indiana bill from women who said their doctors lead them to believe they had no choice but hysterectomy. They were coerced by misinformation, incomplete information, and fear-mongering--references to overblown risks of cancer.

It's also worth remembering that this is not the first time that women's health advocates have acted to intervene in the patient-doctor relationship on the grounds that women were not being told the whole story. In 1978, the U.S. Food and Drug Administration mandated that women be given informative information about birth control pills when they picked up prescriptions at the drug store. The FDA had tried years earlier to have doctors give women an informative handout, but the doctors had ignored the material or refused to hand it out.

In an ideal world, physicians' ethics would obligate them to provide women with complete information. But they haven't. The hysterectomy machine grinds on. Doctors and hospitals have financial incentives to keep it up--forever, unless there is a major intervention, yes, between them and their patients.

I teach ethics, with a focus on the media, but the principles for deciding if an action is ethical are the same regardless of the subject. Ethical dilemmas arise when all the means you have of dealing with a problem result in some kind of harm. In the case of the required showing of a video to a patient before consent, you are intruding on the doctor-patient relationship. You are turning an "I trust my doctor" simple decision into a more complex calculation that forces women to question their doctors.

On the other hand, there's the huge evil of avoidable hysterectomies. Since the goal is to protect women's health--not to force a woman to continue a pregnancy or to ensure she remains fertile-- you can ethically justify the intrusion of the video as less harmful than the surgery itself. The contents and tone of the video--or the text a woman must read--however, should be as inoffensive as possible.

This isn't the case with abortion consent laws. Abortion videos show gruesome pictures of actual abortions in what amounts to emotional blackmail. Oklahoma's new abortion consent law--stayed by the courts at the moment--requires women to undergo an ultrasound exam and hear a detailed description of the fetus before having an abortion.

The HERS video shows no gruesome pictures. Using drawings and a calm voice-over, the HERS video attempts to give a non-ideological picture of the functions of a woman's sex organs and their life-long importance to her health. A friend of mine who has spent decades working in the field of doctor and patient education finds some of the wording biased, so I'm sure it's possible to make it even more neutral.

If all women considering a hysterectomy had to view the video, tens of thousands every year might avoid losing their sex organs. Seems to me it's more than worth it to intrude on the doctor-patient relationship.

But if anyone has a better idea of how to stop the hysterectomy epidemic, please speak up. That includes you, Joan Laskowski.

The HERS Conference: Dr. Levine Delivers the Truth

The HERS conference last Saturday delivered a mountain of information in an atmosphere charged with sadness. Much of the audience was in tears listening to women tell about how they had become victims of doctors who continue to ignore the facts about avoidable hysterectomies.

In this first report on the conference, I'm focusing on Dr. Mitchell Levine, a remarkable, Boston-based gynecologist whom we would clone if we could. Here's my report:

Dr. Mitchell Levine, who teaches at the Tufts and Harvard Schools of Medicine, doesn't look much different from other tanned and fit 57-year old male doctors. But when he talks about women and their fate as victims of hysterectomy and removal of their ovaries, his tone because so respectful, even reverential, that it is unexpected, almost shocking.

"It's too sacred, it's too complex, to just take things out," he is saying as he sweeps a laser pointer over a full-color diagram of a woman's internal organs. But, he continues, taking a uterus out is so easy to do: "Clamp, clamp, clamp, clamp. Done." He demonstrates with four quick clenches of his hands.

Levine is speaking at the 28th conference of the HERS Foundation in a Manhattan hotel. He's telling the truth about the consequences of this surgery and why he believes that "at least" 90 percent of the 600,000 done each year could be avoided with other treatments, some as simple and cost-free as waiting.

It's a huge contrast to the paternalistic advice most women get: Your uterus is just a cradle. Done having children? Then you don't need it any more. But you'll still have the playpen! Wink. Wink.

And: You'll love life after your hysterectomy. No more periods!

And: If I end up taking out your ovaries, just think, no more risk of ovarian cancer!

"It's part of their training," Dr. Levine explains to me. "That these (the ovaries) are ticking time bombs. Instead, you end up shortening (a woman's) life because you've increased her risk of heart disease." Yes, that's right, a woman 40 to 44 whose ovaries are removed or which stop functioning as a result of a hysterectomy (that happens in better than one in 10 cases) faces twice the risk of heart disease as a woman with intact ovaries. This added risk more than outweighs the possibility of ovarian cancer, according to medical studies.

"Can you imagine if a man went to a doctor for a benign condition and the doctor said, 'I can fix that by cutting your nuts off?'" Levine asked with a laugh.

"He'd turn right around and walk away."

Indeed. Men would never voluntarily give up their virility, their joy in sex, to cure a non-life-threatening problem. They have no confusion about the fact that their organs are sex organs, not just baby-makers. Yet, women's organs have been labeled by the medical profession as "reproductive" instead of sexual, and the medical professions is more interested in us as baby factories than as sexual beings. So they talk us into castration for non-life-threatening fibroids and bleeding that can be managed in other ways. And we enjoy sex less as a result, some of us losing most if not all of our libido and some or most of our ability to feel sexual stimulation.

The situation has become more perilous for women as new surgical techniques make it possible to do hysterectomies on an outpatient basis.

Levine goes into detail about this. There's the traditional way, via a long abdominal incision; and then there are the newer ways, via the vagina or laparoscopically through small, abdominal incisions. For the small percentage of women who truly need their organs removed, these techniques are better, shortening recovery time from the surgery.

But regardless of how the surgery is done, there are the same consequences for women who could have avoided it. No matter how it's done, says Levine, removing the uterus "is still cutting the ligaments and the blood supply" to not just the uterus but to other organs as well.

As a result, 10 to 15 percent of women who have only their uterus removed lose the function of their ovaries anyway, apparently because of the loss of blood supply. This plunges them, whether they are 25 or 45, into an immediate and crushing menopause.

Furthermore, the ligaments that are cut are critical to the support of the bladder and bowel. When the uterus is removed, it leaves an empty space, and lacking their previous support, the other organs can sag and lean on each other. Urinary and bowel problems become much more likely.

The most common reason for hysterectomy is fibroids. But when Dr. Levine sees women with fibroids, hysterectomy is the last thing on his mind.

"For example, if a routine exam shows a fibroid, but the woman has no symptoms, I reassure her and say, 'See me in a year.'

"Or, if she's bleeding a lot but it's manageable, I just tell her to take some iron and wait" if she is near menopause. Estrogen, he explained, makes fibroids grow, and because estrogen levels drop at menopause, fibroids will then shrink.

If the bleeding is severe and menopause too far off, Dr. Levine may do surgery to remove them, leaving the uterus and ovaries intact.

Women at the conference asked what Dr. Levine would do if a woman had multiple fibroids--30 or even 50--or if some of them were very large. He answered that it didn't matter. He could still remove them, explaining that they are usually in a sort of capsule, like a hard boiled egg, and pop out when the capsule is cut.

But here's the kicker: Even though it takes longer to cut out fibroids and stitch the uterus back together than to do a hysterectomy--clamp, clamp, clamp, clamp--Dr. Levine gets paid less money to do the conserving surgery than to hollow out a woman's insides.

As U.S. Rep. Carolyn Maloney said at the conference, "Where is the outrage?"

Evidence Ignored by Doctors Removing Women's Ovaries

I have been deeply affected by the comments of women in response to my last blog about hysterectomy. Their lives have been devastated by--what should I call them? Ignorant? Arrogant? Unethical? Unprofessional? All of these?--doctors who continue to remove healthy ovaries from women in the face of evidence that they are causing irreparable harm to their patients.

Spurred by these comments, and by my need to prepare to attend the HERS Hysterectomy Conference this coming Saturday, I did some research and found a smoking gun right on the website of the American College of Obstetricians and Gynecologists. It's an August, 2005 article (scroll down the search page to the 7th article) that appeared in the journal Obstetrics & Gynecology. Apparently, it's not required reading for the practicing physicians who continue to castrate women.

Called "Ovarian Conservation at the Time of Hysterectomy for Benign Disease," it takes a comprehensive look at the risks and benefits of removing a woman's ovaries at the same time that she has a hysterectomy for non-cancerous problems like fibroids and heavy bleeding. As far as I can tell at this point, it appears to be one of the latest investigations of the issue, which, despite its importance to women, has not been the subject of much research at all.

Here are some of the conclusions:

• At no age is there any clear benefit to women from removal of the ovaries (oophorectomy).
  
• "For women younger than 65 at the time of surgery, oophorectomy increases the risk of dying from coronary heart disease."
• Evidence from the Nurses' Health Study says that the risk of heart attack was doubled if the women in question were between 40 and 44 years old; and up 40% if the women were older than 50.
• After losing their ovaries, women have higher bad cholesterol levels, higher blood pressure and more hardening of the arteries.
  
• Women who were past menopause when they had an oophorectomy ended up with 54% more bone fractures due to osteporosis than women with intact ovaries.
• The fractures often were of the hip, and having a hip fracture between ages 60 and 64 meant dying early--a loss of 11 years of life!
• It also means that many of those women could never leave their homes again on their own. One study found that before breaking a hip, 28 percent of the women were housebound; after the fracture, 46 percent were housebound.
  

So why do doctors continue to castrate women?

I certainly have no satisfactory answer to that.

But some, apparently, believe that the overriding benefit is to reduce a woman's chance of getting ovarian cancer. But this study notes that removal of the uterus alone lowers the risk of ovarian cancer by 40% below the level of women who retain their uterus.

So, let's see: since men have a risk of testicular cancer, should doctors be removing their testicles just in case? Or treating them with female hormones to reduce the risk of prostate cancer?

We women know that would never happen. Men prize their virility and do everything to keep it. Women prize their sexuality, too, but consent to hysterectomy and oopherectomy too often without realizing what they will be giving up. Thus the need for the HERS Foundation video and consent only after seeing it.

So, is it ignorance of the facts that keeps doctors castrating women? Or what? Theories--and certainly facts--welcome.

Tell the Truth About Hysterectomy!

Do women really get the whole truth about hysterectomy before consenting to this all-too common procedure? I know I didn't.

Nora Coffey, head of the HERS foundation, has been convinced for years that women do not realize that they will certainly lose some sexual feeling; will likely have problems with their bladders and bowels; that they may suffer back pain and see their waists enlarge as their internal organs and bones shift in place because where their uterus used to be is now an empty space. In the years since I underwent a hysterectomy in my mid-40s, I have suffered all of these symptoms, and my doctor never mentioned a single one. (It was a woman, by the way.)

On Friday, April 24, the foundation will hold its 28th Hysterectomy Conference at the Hilton New York Hotel in Manhattan to focus attention on an effort to require that women learn about all the possible consequences of hysterectomy before consenting to the procedure. The conference will feature an Indiana state legislator who is the first to introduce legislation requiring such disclosure.

And, the keynote address will be given by U.S. Congresswoman Carolyn Maloney of New York who will reportedly raise the issue of unnecessary hysterectomies in the House-Senate Joint Economic Committee, which she chairs. Experts estimate the cost of unnecessary hysterectomies at $17 billion a year.

I'll be covering the meeting for womensenews, a non-profit that specializes in news of particular interest to women.

But in this case, I certainly think that men would like to know about a medical procedure that will most definitely affect their sex lives along with their female partners!

The HERS foundation is advocating that women be required to view an 11-minute video it produced before consenting to hystserectomy. The video shows in a very matter-of-fact manner, using only color diagrams and voice-over-text, the story of female anatomy that somehow got left out of all our high school health classes.

"Women who watch that get it: they understand this is very serious surgery," says Coffey, who believes requiring the video is the only way to bring down the number of women who lose their uterus every year. As I've blogged about before, an astounding one out of every three American women have had surgery to remove their uterus by the time they are 60, and of those, 75% also lose their ovaries, the equivalent of male castration.

There is precedent for requiring the showing of videos: Utah, for example, requires women who are seeking an abortion to see one. Drug companies are required to put informative inserts into packages of medication, for example in birth control pills, thanks to the historic efforts of women's advocates including Barbara Seaman.

Losing your uterus is not like losing a tooth. Lose a tooth, and you can still chew with the others or get a false one to take its place. Each woman get's only one uterus, and it's so much an integral part of our bodies that you don't even realize you'll miss it until it's gone. And then, it's too late.

1 in 3 American Women Castrated

Castration is an ugly word, but it's the right word to use when talking about the 600,000 American women who have their uteruses removed every year! And of them, 438,000 simultaneously have their ovaries cut out also. One out of three American women over 60 lives on without her uterus or ovaries, and is never the same for their loss.

Never the same sexually: a woman who always had uterine contractions during orgasm can't have them ever again after a hysterectomy. Furthermore, even if her ovaries are not removed, sexual sensation is diminished because of the severing of nerves and lowered flow of blood to the vagina, labia and clitoris. If a woman consents to removal of her ovaries also, she is thrown into an immediate and crushing menopause.

As someone who underwent uterine removal in her 40s, I am speaking from personal experience, but to get a sense of how bad it is for women take a look at both the website of the HERS Foundation and its associated blog and comments. The foundation's mission is to stop this continuing assault on women by the medical profession. In their comments on the blog, young women, one only 16, others in their 30's and older describe not only devastated sex lives, but loss of energy, depression, memory loss, bone and joint pain.

Nora Coffey, president of the HERS Foundation, is campaigning for a law that would require that women receive complete information about hysterectomy before they consent. They aren't getting that now, with so-called patient education information limited primarily to talking about the uterus's function as a baby incubator. (You don't need it anymore, dear, do you? goes the spiel.) HERS has developed an 11-minute video that makes clear the uterus's other functions as a sexual organ and a muscle that supplies support to the bladder and bowel. The video should be required viewing before a woman gives her consent. In fact, there's a petition to sign to make that happen.

In no other country do so many women undergo hysterectomies, and the procedure is less necessary today than ever because there are now alternatives for treating bleeding from fibroids, for example, the single largest reason for hysterectomy. It's a scandal of which America's oby-gyns should be ashamed.