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,
or you can get cautionary information from Hysterectomy Educational Resources and
Services (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
60^th 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. 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.