1 in 10 Women Have Endometriosis. Why Don't Their Doctors Believe Them?

In "Ask Me About My Uterus," Abby Norman exhaustively chronicles her years-long struggle to make doctors take her pain seriously—something everyone who suffers from endometriosis can sadly relate to.

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Mar 7 2018, 8:27pm

Photo by Zoa Photo via Stocksy

After writer Abby Norman became seriously, mysteriously ill, she went to the doctor—or, rather, she had to go to a series of doctors. One of them, “dad-age” Dr. Wagstaff, opened by noting her resemblance to Anne Hathaway, casually suggested that her pain might be a psychosomatic reaction to non-existent experiences of childhood sexual abuse, and concluded with a diagnosis more psychological than physical. “Your problem is complicated,” he told her authoritatively. “Just like you.

This visit is a compact illustration of the challenges facing women in pain. Doctors are more likely to dismiss their reports of their symptoms under the mistaken assumption that women are simply too sensitive or hysterical to tell the truth about their own pain—implying, as Wagstaff did, that our real problems are all in our heads.

Norman’s new book, Ask Me About My Uterus: A Quest to Make Doctors Believe Women’s Pain, is a chronicle of her struggles with endometriosis, a disease where uterine-like tissue implants itself where it doesn’t belong, causing debilitating chronic pain, nausea, fatigue, and, potentially, infertility. It’s equally a story of her fight with a patriarchal medical establishment, which has officially recognized endometriosis only slowly and reluctantly, and of coming to understand first-hand that when women hurt, sexism often exacerbates their pain.

A 2001 study by Diane E. Hoffman and Anita J. Tarzian, “The Girl Who Cried Pain,” found that when both men and women present the same symptoms, health care providers are more likely to give pain-relieving drugs to men, whereas women are more likely to receive sedatives, suggesting that medical experts believe women are more hysterical than ill. Women are “more likely to have their pain reports discounted as ‘emotional’ or psychogenic’ and, therefore, ‘not real,’” the study says.

Though many women find their pain dismissed by doctors, endometriosis sufferers are at particular risk. Their symptoms aren’t always visible, and the disease is poorly understood. Doctors harbor preconceptions about what a patient with endometriosis looks like: female (though some trans and cis men are also affected), white and upper-middle class (black women are likely to find themselves misdiagnosed with sexually transmitted pelvic inflammatory disease instead), sensitive and ambitious. For decades it was known as the “career women’s disease,” believed to be the product of delayed childbirth.

“I was the primary source of data for the investigation into my condition, and yet it often felt like the data I presented was questioned by others as unreliable.”

Many doctors, “educated over the past fifty years, only saw endometriosis as a footnote in a textbook,” Norman writes. As with most diseases primarily found in women, it’s under-researched: As she points out, “If you put ‘endometriosis’ into PubMed, you get about 1,800 pages of results. Liver disease [which is thought to affect a similar number of people] returns over 30,000.”

It takes the average endometriosis sufferer 10 to 12 years after the onset of symptoms to receive a correct diagnosis. They face down a gauntlet of physician ignorance and bias––and frequently find themselves dismissed, as Norman was, as a “Freudian hysteric with an iPhone.” One doctor went so far as to confidently inform her, “This is all in your head” before even performing an exam.

Norman isn’t a doctor or an expert in endometriosis; she’s merely “an expert in…[her] own body,” her own endometriosis. In writing this book—and in figuring out what was happening to her—she spent years digging into the research on the disease, and tuned in daily to the frequency, intensity, and quality of her own pain, “like [an] oceanographer…listening for undersea seismicity.” “I was the primary source of data for the investigation into my condition,” Norman observes, “and yet it often felt like the data I presented was questioned by others as unreliable.”

Dismissed again and again based on the tired stereotype of hysteric or hypochondriac, Norman dares to present herself as a full human being: one who jokes, loves her dog, and talks about her troubled family, her “fiery, red-hot diarrhea,” and wishing she could still masturbate. She insists that her experiential knowledge of the disease could give doctors crucial clues into her condition––if only they would listen.

Norman emphasizes what the disease has taken from her: thirty pounds, the chance to finish college, a romantic relationship that she couldn’t sustain in her pain and exhaustion. She questions why it’s so difficult to get doctors to prioritize treating her pain and improving her quality of life, rather than keeping her fertile—though she isn’t interested in having children, one refuses to remove a painful chocolate cyst on her ovary for fear of making her subfertile.

Norman is smart and gripping as she analyzes the role sexism plays in misdiagnosing and mistreating women’s pain. But I wished she had used her feminist analysis to make broader political arguments. Living with endometriosis necessarily involves grappling with gender politics. But equally, it necessitates having a stake in the national-level political conversation over who “deserves” quality health care, and how it’s paid for.

She writes about how hard it is for her to afford care and pay her medical debts. So why doesn’t she voice support for an expansion of the Affordable Care Act, Medicare for All, or another system which would help all of us to get the care we need regardless of income—or gender?

She also has moments of shoddy argument. Most troubling, to me, were the paragraphs in which she suggested we replace the tired idea that women are overly sensitive to pain with its opposite: that women excel at suffering. “Most of the women I know…couldn’t be stopped from taking on their daily schedules by anything less than a complete limb amputation,” she writes, admitting her evidence is anecdotal. Her male friends, meanwhile, are felled by the sniffles.

She draws from history––a very generalized history––to support her view that “female pain is an evolutionary constant.” “Women have been laboring through their labor for centuries,” she claims, “[only] pausing momentarily during the bountiful harvest to push out a baby.”

Photo by BSIP via Getty Images

In arguing against the female of the figure hysteric, Norman ironically invokes another tired stereotype: that of the female martyr. This stereotype is arguably even more ancient than that of the histrionic, oversensitive patient, and equally insidious. It’s one that continues to help justify the normalization—and under-treatment—of female pain. The authors of “The Girl Who Cried Pain,” for instance, found that a majority of doctors believe that “women have a natural capacity to endure pain” beyond what men possess. Other studies show that women wait longer for treatment than men with the same severity of abdominal pain, and are prescribed less pain-relieving medication for it. And a 2006 study found that women eventually diagnosed with endometriosis often delayed seeking help because they themselves viewed their agonizing period pain as normal.

The idea that women are meant to suffer is one of the reasons girls are still taught that pain is just a part of being female: sex hurts, periods hurt, childbirth hurts, so we shouldn’t ask for the things that might alleviate our pain—like sex that prioritizes female pleasure or better treatment for diseases, like endometriosis, that can cause extraordinary levels of menstrual pain.

In moments like this, Norman slips into an all-too-tempting pattern of thinking. When we’re told that women are weaker or more sensitive than men, it’s easy to want to shout back, No, we’re tougher—just look at how much we’ve suffered! Both arguments are a version of the same idea: that there are essential differences between men and women, which play out in their relationship to pain.

But, as Norman underscores throughout her book, women don’t experience pain beyond what men do solely because they’re women; they’re simply more likely to have their pain ignored or minimized. Women in our culture have a unique relationship to suffering because research into diseases predominantly found in women is underfunded, education about those diseases is neglected, and the patriarchal medical establishment ignores women’s testimony about their own bodies. Norman arms us with knowledge of medicine’s sexist status quo––now, we should start agitating to change it.