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The Constant, Crippling Pain Many Women Think They Have to Endure

I suffer from endometriosis, a horrifically painful disease many women suffer without cure, or even diagnosis. Why do they endure this pain without asking questions?
 
 
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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.

Lone Hummelshoj, 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 Hummeshoj. 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. 

Lauren Wolfe is senior editor for the Committee to Protect Journalists. Since writing this story, she has undergone surgery and has been navigating the complicated world of how to suppress regrowth of the disease.
 
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