A lot of women have a lot to say about hysterectomies. It's the best thing that ever happened to them; it's the worst thing that ever happened. They feel liberated; they feel rage. They wish they'd done it sooner; they wish they hadn't been pushed into it. You can get gal-pal advice from the HysterSisters [10], or you can get cautionary information from Hysterectomy Educational Resources and Services [11] (HERS).
Or, of course, you can hear directly from women who've had the operation. It's not difficult to find them; 600,000 women have a hysterectomy each year, says Dr. Jay Goldberg, director of the Jefferson Fibroid Center at Jefferson Medical College in Philadelphia.
Put another way: one in three women has a hysterectomy before her 60th birthday. Yet treatment for life-threatening illnesses -- uterine and ovarian cancers -- accounts for only 10% of the procedures.
The other reasons? About 40% of hysterectomies are performed due to fibroids. Endometriosis, a condition in which uterine tissue grows outside of the uterus, accounts for others. Heavy bleeding, a uterine prolapse (when the organ slips out of place), a caution against cancer, birth control, and, for trans men, sexual reassignment surgery, are all among other reasons for hysterectomies.
Many who have the operation are making their best choice, and have never felt better. But what are the real implications of removing a major reproductive organ from a woman's body -- even when she doesn't desire giving birth to children? "In truth," Natalie Angier writes in Woman: An Intimate Geography, "
...we know remarkably little about the purpose of the various opiates, chemicals, hormones, and hormone precursors that the uterus secretes with such vigor. We don't know how important the output is to our overall health and well-being beyond considerations of reproduction, nor do we know whether the various secretory skills continue past menopause. ... We should be humbled by the fact that scientists discovered the very dramatic concentrations of anandamide in the uterus as recently as the late 1990s. And that humbleness should in turn enhance our vigilance against removing the uterus in all but the most extreme circumstances.
Women who have a hysterectomy require six to twelve weeks of recovery time -- a testament to the procedure's gravity. And HERS chronicles a long list of adverse consequences of the operation that call its widespread acceptance into question. Among the after-affects reported by women who had hysterectomies include personality change (79%); profound fatigue (76.9%); diminished or absent sexual desire (75.2%); short term memory loss (66.9%); insomnia (60.5%); and pain in joints and bones (59.9%). In Woman, Angier reports that hysterectomies -- even surgeries that preserve the ovaries -- cause a woman a "heightened risk of high blood pressure and heart disease ... possibly because the extraction of the uterus eliminates one source of prostaglandins that help protect blood vessels."
Deborah McConnell, a nurse at Boston's Brigham and Women's Hospital, said that hysterectomies that remove the ovaries cause immediate menopause, because of sudden disappearance of hormones ovaries release. "The sudden drop [in hormones] can have affects on bone health, heart health and mood effects as well," McConnell says.
So it's surprising that for illnesses that can be treated less invasively, alternative treatments aren't offered more often. And there are many possible treatments for fibroids, endometriosis, and pain: mymoectomies or lapatotomies to remove fibroids; uterine fibroid embolization (blocks blood supply to fibroids for shrinkage); endometrial ablation (uses microwaves to destroy endometrial lining in a five-minute procedure); pain medications; hormonal agents; lifestyle changes; a progesterone IUD; medications; and HIFUS (High Intensity Frequency Ultrasound), which targets fibroids with an MRI-guided ultrasound system. And Goldberg reports that alternative treatments for conditions that lead many women to hysterectomies are among the best-funded research projects, so we can expect still more options soon.
If there are so many options for women, and so much about the uterus still a mystery, then how did we get here, with hysterectomies the second most common operation that American women undergo?
How Did We Get Here?
After conversations with people who had, and chose not to have, hysterectomies, and with people who perform the operation and who counsel for alternatives, some explanations stand out.
1) Habit. As Goldberg points out, many doctors -- especially older ones -- are accustomed to prescribing hysterectomies for women who don't intend to have more (or any) children and who suffer from reproductive system troubles. "There's an older, paternalistic attitude," Goldberg explains. "'If you're done having kids, let's take the uterus out.' [Other doctors] will bring up alternatives to hysterectomies, and older doctors will scoff at you a little bit, like, why would you suggest anything else?"
The habits of individual doctors aggregate into regional and demographic patterns. The Agency for Healthcare
Research and Quality reports that "women who live in the Southern and
Midwestern areas of the United States, African-American women, and women who
have male gynecologists are more likely to undergo hysterectomies."
2) Lack of information. The doctor may not be aware of alternatives that might allow a woman to avoid a hysterectomy while relieving her symptoms. Or the doctor might not know how to do a procedure. "In Philadelphia, the doctor gets paid about $1200 for a hysterectomy," Goldberg says. "There's an alternative treatment, an embolization, that needs to be performed by a radiologist. So it can come down to economics: if you refer the patient to a radiologist, you lose the financial reimbursement."
Women often lack the information themselves. Judy Norsigian, executive director of Our Bodies Ourselves, says there's "no question that women aren't always getting good information about the implications of a huge surgery."
To explore alternatives and their
consequences, however, takes time. Many women are not willing, or able, to give
that time -- especially when they feel the urgency of their symptoms.
3) Imbalance of authority between doctors and patients. Dr. Clarissa Pinkola Estés's experience illustrates an extreme case. She had a hysterectomy at age 33; she's now 62. "I remember asking, ‘Please, please, help me save my body, so I can have more children," Pinkola Estés says. "I remember as though it happened yesterday, the male doctor literally shouted: ‘You will not dictate to me on matters of medical importance.'"
In less dramatic ways, many of us defer
to medical professionals. Goldberg says "a lot of patients don't want to insult
the doctor with questions," but with information increasingly accessible
online, many people are able empower themselves.
4) It's self-referential. With hysterectomies so common, the operation gains a whiff of normalcy, or is even seen as a rite of passage. Most of us know many people who had a hysterectomy. This, then, comes to seem the sensible alternative if we find ourselves suffering from bleeding, pain, or other symptoms.
Questions about hysterectomies don't exist in a vacuum. There's no doubt that we are informed by an ancient history of valuing women for their ability to bear (male) children. That is, a woman's body, and particularly her reproductive organs, had utilitarian worth and little more. But as Angier reminds us, the uterus may offer countless health benefits to women beyond its essential role in bearing children.
It's foolish to believe that we've overthrown millennia-worth of such sexism in a couple decades. The living legacy of a utilitarian view of women's reproductive organs is apparent in the arguments those who oppose abortion and contraception, where primacy is given to zygotes over the woman they exist within.
We also cannot forget that our country has a chilling history of abuse of women's reproductive systems. Dorothy Roberts has detailed the history of coercive or forced sterilization, often including hysterectomy, of women of color, indigent, and "mentally deficient" women in Killing the Black Body. She writes,
During the 1970s sterilization became the most rapidly growing form of birth control in the United States, rising from 200,000 cases in 1970 to over 700,000 in 1980. It was a common belief among Blacks in the South that Black women were routinely sterilized without the informed consent and for no valid medical reason. Teaching hospitals performed unnecessary hysterectomies on poor Black women as practice for their medical residents. This sort of abuse was so widespread in the South that these operations came to be known as "Mississippi appendectomies."
The prevalence of unwanted hysterectomies led many Black women, in activist Frances Beal's words, to be "afraid to permit any kind of necessary surgery because they know from bitter experience that they are more likely than not to come out of the hospital without their insides."
Sterilization wasn't just used to control African-Americans, but also Native Americans.
"Even the word (‘hysterectomy') just scares me so much and brings up all of these memories," says KL Pereira, a 27-year-old Native woman living in Cambridge, MA, citing a history of doctors using forced sterilization on Native women after difficult births and abortions. Pereira's aunt went in for a D&C treatment for her endometriosis. She expected superfluous tissue to be scraped away; she came out of the operation with a hysterectomy that her doctor decided that she needed.
"Especially for a young girl who was really just learning about her body and the medicalization of it, I felt like I would never trust doctors or hospitals. And I honestly still don't," she says.
This is the context we're in today: a history of coerced and forced hysterectomies is one part of why -- it bears repeating -- hysterectomies have become the second most frequent operation performed on women.
Truly Free Medical Choices
There is no doubt that a good portion of those operations are performed on women who diligently researched, explored alternatives, and partnered with her doctor to come to a mutual decision that a hysterectomy was her best option. There is no doubt that hysterectomies save the lives of many women.
Steve Wilson of Long Beach, CA, considers herself one of them.
"I was totally comfortable having the complete hysterectomy, and haven't been sorry since I did it," Wilson said. "The pathology report came back as pre-cancerous -- was relieved."
Who could blame her? But while we may cheer Wilson for her choice, we must be quite aware that many other women aren't making free choices -- free, in that it is unadulterated by an imbalance of power in the doctor-patient relationship, that the patient has complete and clear information about all options and their consequences, that her doctors are in no way biased towards her because of her color, class, marital status, and interest in bearing children, and that ability to pay in no way limits her options.
Dr. Lori Warren, a gynecologic surgeon in Louisville, KY, is pushing for genuine medical choices for women with her website, BetterHysterectomy.com. [12] Says Dr. Warren: "I truly believe that biggest changes will come through patient education and for women to be empowered to ask for a better, less invasive surgery."
Perhaps the frequency with which hysterectomies are performed is symptomatic of the constrained options women, and all individuals, have in our country's broken health care system. We must expect more from our medical providers. And we can act on those high expectations with persistent questioning, self-education, and a thorough exploration of all treatments.
There's really no other option. Our very bodies are at stake.