Pain winds around my inner organs
like a thread on a needle. It’s looped around an ovary and dipping down under
my colon. The variety of it fascinates me. It’s dull and booming, sharp and
pricking, oozing and burning, white and flashing. I can produce different
feelings in different positions, and that’s about the entirety of the power I
have over this thing that has taken over the lower half of my torso.
I feel a little selfish telling you
this. Pain is hardly mine to fetishize—mine is less than the amputee’s or
the cancer patient’s, I know. It’s less than the soldier’s with a gunshot wound
or a child’s in a car accident. But I want to tell you about it if only because
it is potentially every woman’s pain, this thing I have. You might have it. So
might your mother, your sister, your friend, or your cousin. But because many
women conditioned to ignore pain or have our concerns dismissed, the numbers of
undiagnosed are legion.
I was one of them until recently. A
few weeks ago, I was diagnosed with endometriosis, a disease in which tissue
similar to the lining of the uterus ends up in other parts of the body. The
disease can be found throughout the pelvic cavity and as far north as the
lungs, spine, and brain in rare cases, according to Endometriosis.org.
What happens is, tissue that belongs in the uterus—endometrial
tissue—finds its way outside and latches itself to the walls of other
organs, causing scarring and adhesions, even leading to the sticking together
of organs, as in my case, known in horrifying parlance as “frozen pelvis.”
I’m headed into surgery in two days.
I’m lucky. My doctor says the average time for diagnosis of endometriosis is
eight years. That’s eight years of women downing ibuprofen to blunt the “much
worse” periods than usual or the sudden stabbing mid-month. She told me about
women whose doctors have told them that the reason they are in pain is because
they “have not accepted the condition of being a woman.” But I reject
that—being a woman does not inherently equal physical suffering. Bleeding, cramping, childbirth, sure. Not the pain of your
uterus fused to your colon, as mine is.
editor-in-chief of Endometriosis.org, a peer-reviewed informational site for patients, said that
widely accepted figures point to 176 million women worldwide who have
endometriosis, that 1 in 10 women during their reproductive years may have the
disease. We’re talking more than 7.5 million women in the United States who
suffer from endo, as it’s commonly known. According
to my gynecological surgeon at Mt. Sinai Hospital in New York, 70 percent of
women’s pelvic pain is due to the disease.
Part of the problem in figuring out
who has endo is that diagnosis is not solidified
until laparoscopy is performed and tissue is biopsied, unless you’re one of the
unhappy few who can be semi-diagnosed from a series of invasive squeezes that
make you wish your bowels could drop away and be gone forever (that would be
the case if, say, your uterosacral ligaments were
rock hard because they were covered in scar-like endo tissue, as mine are). There is no definitive cure.
What really got me going, however,
in wanting to write about this—besides the pain of the disease—was
the discovery that so many women suffer without cure, or even diagnosis. I
wanted to figure out what was going on.
One doctor I spoke to told me that
there are very few doctors who treat endometriosis--basically because “people
in constant pain are really annoying. No one wants to deal with them.”
I ran that by my current treating
doctor, Dr. Iris Orbuch, the director of the Advanced Gynecologic Laparoscopy
Center in New York, and the associate director of Mt. Sinai’s gynecological laparascopy fellowship. How many doctors treat endo? I asked Dr. Orbuch. “Too
few,” was her easy answer. I’ve heard doctors estimate that there are only
maybe 20 true excision laparascopists in the U.S.,
meaning doctors who perform deep excision surgery to remove adhesions and any
remaining cells that could re-grow post-surgery. (Many doctors perform a more
surface type of surgery, “a quick face fix,” but this isn’t considered adequate
by many specialists in the field.)
“Endometriosis surgery is harder
than cancer surgery,” said Dr. Orbuch. When I asked
her to explain why, she said it’s because the disease frequently invades the
bladder, the intestines, and the upper abdomen. Basically, a surgeon has to be
able to operate on various systems and organs and be trained by another
doctor—one of the “too few”—who does this precise work.
But I want to get back to why the
disease is so underdiagnosed. Why can it take up to 12 years to identify? Are doctors really just ignoring women who are too whiny?
Dr. Orbuch doesn’t necessarily think that’s it. There
are problems she sees on the doctor end—like ob/gyns who are too busy running back and forth delivering
babies to spend the time that’s needed to listen to women in complex pain.
Sometimes, she says, doctors don’t actually ask about pain, and patients are
too shy to bring it up anything about their menstrual cycles. She compared it
to 70-year-old women who have incontinence: Maybe they don’t want to complain
about something so private.
Part of the problem seems to be that
too many people don’t understand women’s bodies well enough to get to a
diagnosis—not even some women themselves.
“Women don't know what is normal when it comes to menstruation and thus may not seek help
when pain becomes a problem,” says Hummelshoj. She
doesn’t blame this totally on the patient though. “General physicians don't
recognize pain symptoms as a potential indicator of endometriosis—they
know too little about the prevalence and impact of the disease, which is still
perceived to be so much lower than it really is.”
I can’t help but feel that there
might a gender problem here too, however. The “wandering womb” of hysteria is
literally written into this disease. Dr. Orbuch agrees.
“The mothers were told, ‘It’s
normal, suck it up.’ They then told their kids that bad pain is normal,” she
says. But she sees hope for change. “The new generation is a lot of female
gynecologists, while the generation before was all male.”
As with any equality issue, time,
and education, may make a difference for women with endometriosis. I’m hoping
we can come soon to a new normal, in which women no longer double over in pain
and think that such cramping is just an everyday part of life—and that
their doctors will agree.
Wolfe is the senior editor of the Committee to Protect Journalists and soon to be the director of The War Against Women Project on sexual violence and conflict for the Women's Media Center. Since writing this story, she successfully underwent surgery. This article was originally published on Alternet.