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This is an excerpt about endometriosis adapted from Doing Harm: The Truth About How Bad Medicine and Lazy Science Leave Women Dismissed, Misdiagnosed, and Sick by Maya Dusenbery.
Ellen got her period at age eleven, and, after a few years, the mild cramps she’d experienced at first began to morph into a different beast entirely. “The pain was shifting from my uterus to my hips, and it got worse and worse and worse. And it was a different kind of pain than I was used to. It felt like a burning, inflammatory pain, like if you had a hot coffee mug and pushed it against your joints.” Her back was painful and stiff, all the way up to her neck. “The result was that a lot of times I couldn’t really walk or stand or sit. I could basically only move back and forth in bed every so often to distribute the pain around.”
In high school, she started missing school, usually the one or two days right before her period began, which is when the pain peaked, and became a regular visitor at the nurse’s office. “I think they kind of thought that I was making it up a little bit. Because they were like, ‘Oh yeah, it’s you again.’ At least once a month, I’d have to be taken home from school by my mom and carried into the house.” A couple times she ended up in the hospital. “They didn’t really know what to do. They just kind of gave me morphine, and the next morning they sent me home.”
Perhaps no disease has been more hampered by the normalization of women’s pain as endometriosis. A common, poorly understood disease that affects at least 6.3 million women and other people with a uterus in the United States, endometriosis occurs when a substance similar to the endometrium (the tissue that lines the uterus in preparation for implantation of a fertilized egg and, if that fails to happen, bleeds and sheds during menstruation) is found in other parts of the abdominal cavity. This tissue responds to the hormones that trigger menstruation, also bleeding and attempting to shed each month. The result is pain, inflammation, and the formation of nodules, cysts, and scar tissue.
The disease’s symptoms include pain before and during periods, fatigue, heavy bleeding, painful bowel movements, painful urination, and diarrhea and constipation during menstruation. About a third of patients with endometriosis are infertile, and more than half experience pain during sex. Some endometriosis patients have pain all the time, not just around their period; the condition is thought to explain up to 90% of cases of chronic pelvic pain in women.
To get officially diagnosed, you have to undergo a surgical procedure that identifies the endometriosis lesions. Which means that you have to convince your doctor that your symptoms are not just “killer cramps,” a task that proves all but impossible for many women. In the United States, on average, it takes ten to twelve years between the time the symptoms begin — which, for 60% of patients, is before age twenty —and getting a diagnosis. According to the Endometriosis Association’s research registry, 61% of endometriosis patients had been told by health care providers that nothing was wrong with them.
The widespread belief — shared by the medical system and the public alike — that menstrual pain is “normal” poses a barrier to the prompt diagnosis of endometriosis even before a patient steps foot in a doctor’s office. A 2006 study of women eventually diagnosed with the disease found that one of the reasons for the diagnostic delay was that the women themselves didn’t see a reason to ask a doctor about their painful periods. They figured they were just one of those “unlucky” people who got bad cramps. And really, how would they know that their periods weren’t normal? There’s so much stigma around menstruation that many young women are left without any point of comparison.
Ellen certainly didn’t have one. The pain was so bad that she’d become depressed and anxious in anticipation of every period. But she doesn’t recall ever talking to her friends about it in high school. “People don’t really talk about it — even between women,” she says. “I had nothing to refer to when it came to menstrual pain. It seemed like everyone else was handling it and wasn’t being bothered by it, so I figured, why wasn’t I doing that?”
Her mom’s response confirmed that sense. “I’d tell my mom, ‘When I feel this pain, I want to die.’ And she’d say, ‘Well, periods are supposed to hurt.’ She’d say, ‘When I was your age, I’d have really terrible periods.’ She kind of thought it was normal for me to be going through the same thing.” This, too, is common. Many endometriosis patients reach out to their mothers or other relatives to gauge their symptoms, only to find that they’ve had similar experiences, likely because endometriosis runs in families. Someone is seven times more likely to have the disease if one of her close relatives does.
Kate Seear, author of The Makings of a Modern Epidemic: Endometriosis, Gender and Politics, has argued that part of the reason menstrual pain is normalized is that there’s such a strong “menstrual etiquette” that discourages people from discussing it. In her studies, many women with endometriosis who did tell others about their menstrual pain were criticized for it. Some encountered employers or colleagues who believed they were using it to get out of work, or partners who thought it was an excuse to avoid sex, or other women who implied they were seeking attention for something that everyone else endures without complaint. In the face of such unsympathetic reactions, they decided suffering in silence was the better option.
Seear notes that even greater public awareness about what constitutes an “abnormal period” may not be enough to improve the diagnosis of endometriosis if experiences like these “dissuade women from disclosing menstrual problems in the first place.” Ellen agrees: “I was raised with the expectation that periods hurt and you just kind of have to grin and bear it. So I felt like I had to be stoic about it.”
Mary Lou Ballweg, executive director of the Endometriosis Association, suggests we should question the entire notion that any degree of menstrual pain is “normal.” Menstrual pain is classified as secondary dysmenorrhea if it’s caused by an underlying disease, like endometriosis, and other common causes of secondary dysmenorrhea include uterine fibroids and ovarian cysts. Primary dysmenorrhea, on the other hand, refers to menstrual pain not due to any evident pathology.
Primary dysmenorrhea is certainly common. The majority of menstruating people in the United States have some — usually mild — pain with their periods at some point, typically during adolescence. According to a 2006 estimate, 12–14% of women experience dysmenorrhea that’s bad enough to cause them to miss school or work. But of course, given how long most endometriosis patients go before getting properly diagnosed, many of those reporting severe menstrual pain are probably actually suffering from unrecognized endometriosis. In other words, the normalization of menstrual pain — even pain so severe it brings young women into the emergency room — is in large part a result of the mass underdiagnosis of endometriosis.
And just because menstrual pain is common doesn’t mean it should be considered normal. After all, not all women do have menstrual pain, so it’s clearly not inevitable. “Women accept that pain with their period is normal. And I don’t accept that,” Ballweg says. “There are many, many reasons in our modern world that periods are painful for some women, but we need to study that and turn it around. A routine physiological process shouldn’t be painful. Whether or not it’s endometriosis, it’s a problem.”
Thankfully, younger women, like Ellen, seem to agree. Endometriosis advocates say women these days are far less willing to accept it when doctors try to send them off with a paternalistic pat on the head and the assurance that debilitating pain is simply “a part of life.” Ellen, now 20, still doesn’t have a certain diagnosis for her pain, but she does have a spot-on diagnosis of what’s wrong with how medicine — and the culture more broadly — approaches menstrual pain: “You won’t label menstrual pain as abnormal but you’ll label women’s responses to it as abnormal.”
Related: This Brand Is Donating 60 Million Period Products to Girls Who Need Them
