My Search for the ‘Missed Disease’

My Search for the ‘Missed Disease’

Photo-Illustration: Josiah Whitfield; Photos: Getty

The bloating started when I was in college. I’d hug my knees to my chest, trying to deflate the watermelon-size bulge in my skinny jeans. During my periods, I’d inhale the maximum recommended amount of Advil, and my heating pad became a second skin. I tried multiple elimination diets in search of a culprit — one so complicated I needed a special app just to grocery shop — but as I got older, my workaholic lifestyle was not conducive to finicky meal prep. I eventually decided, fuck it, might as well eat bread.

Once, the pain hit so bad that I ended up crouched on the bathroom floor at work, begging a colleague to take me to the nearest hospital as the room spun in and out of focus. An ultrasound found nothing irregular, but when I got home, a bloody, fibrous mass the length of my middle finger fell into the toilet (and no, I wasn’t pregnant). That was in 2013; it happened again last year, though the cramps passed quickly enough that I didn’t land in the ER.

A friend became convinced I had endometriosis, a disease where tissue similar to the uterus’s lining grows outside that organ and becomes inflamed. This can lead to excruciating pain during periods, bathroom breaks, and sex, as well as potential fertility complications in up to 50 percent of cases. Was all my bloating actually endo belly? When I started to ask gynecologists about a diagnosis, however, they said that unless the cramps were debilitating — a pretty subjective threshold — I didn’t need one. The only time a doctor seemed concerned that I may have endo was in the context of pregnancy. In my late 20s, a male OB/GYN told me that if any part of me wanted to have a baby, I should start trying yesterday; if I did have the disease, he said, it would only get harder. But he discouraged me from getting diagnosed, since it would require minor surgery. I wasn’t ready to be a mom, so I settled for taking birth control and doing more downward dogs.

People with a uterus have long been told to shut up and put up with pelvic pain from endometriosis, but a few words seem to unlock better care: “I’m struggling to get pregnant.” Many told me they’d experienced this fertility bias, in which the disease is only taken seriously once having a baby is at stake, a phenomenon also documented in research about endo care and on social media. Jenée Desmond-Harris, the “Dear Prudence” columnist for Slate, discovered she had endometriosis that “was really severe and kind of on every organ” when she was having trouble with IVF and her doctor suggested she get checked. “Nobody cares about these things until you can’t get pregnant,” she said on a recent Slate podcast. “Nobody cared that I had horrible cramps my whole life and always complained.”

This approach is both cruel and counterproductive. Endometriosis is a progressive disease measured in four stages, ranging from small clumps of tissue outside the uterus to lesions that colonize the pelvis and other organs. Despite the fact that roughly 10 percent of people with uteruses develop it after puberty — that’s more than 7 million people in the U.S. — and that its celebrity spokespeople include stars like Lena Dunham, Padma Lakshmi, and Halsey, it can take up to a decade to diagnose. Dubbed the “missed disease,” that delay means the pain, not to mention fertility issues, can get worse over time. At a time when the Supreme Court appears hell-bent on forcing pregnancies to term, it’s the implicit message of this bias that really gets to me: I am no more than my uterus, which has a duty to reproduce. My pain, divorced from the context of motherhood, doesn’t seem to matter in a doctor’s office.

Legions of people with endometriosis have been made to feel like whiny brats by their gynecologists. Sufferers flock to endo Facebook pages, the biggest of which have between 60,000 and 150,000 members, to swap horror stories of being dismissed at appointments, despite getting third-degree burns from clinging to heating pads. Those who have fainted from bad cramps, were rushed to the hospital, or had to take 30 Advil a day just to stand up told me providers chalked their symptoms up to depression or called them as “normal” parts of any period. In the most severe cases, people with endometriosis, which is ranked by the U.K.’s National Health Service as one of the 20 most painful health conditions, have died by suicide or had suicidal thoughts.

Katie Boyce remembers sobbing on the exam table in 2013 after a doctor told her the crippling cramps that landed her in the ER were from a “painful bowel movement.” She’d struggled with pelvic pain for more than ten years and developed a drinking problem to cope. Though other providers prescribed birth control pills that did nothing to help, she found a physician shortly after the hospitalization who told her, “I think you have something called endometriosis.” But if she wanted a definite diagnosis, he said, she should tell an OB/GYN, “I’m worried about my fertility.” Boyce knew she didn’t want kids, but she followed the doctor’s advice anyway and was booked for surgery a few months later. Having to pretend “really felt just so icky,” she says, and it sent a clear message: Women who complain about pain are “being dramatic.”

Doctors have long connected endometriosis with failure to get pregnant. In the early 20th century, it became known as a white “career woman’s disease,” a punishment of sorts for those who didn’t prioritize their duty of putting out more babies amid declining birth rates. The problem persists: In a recent Australian study, people with endo said doctors encouraged them to get pregnant, in some cases falsely claiming it would cure their pain. Others were dissuaded from getting hysterectomies, which they felt stemmed from doctors’ belief they “would regret this decision after inevitably changing their minds in favour of motherhood,” according to the study’s authors.

But the medical Establishment doesn’t encourage everyone to reproduce, and for these groups, proper care is even further out of reach. Women of color have been historically discouraged from having kids, a form of discrimination that continues to this day. Black women are twice as likely as white women to get hysterectomies, in part because gynecologists steer them toward more invasive treatments for issues like fibroids. And researchers suspect that endometriosis is severely underdiagnosed in the Black community. “Even today, there’s a perception that Black people feel less pain,” says Dr. Ashley Davis, a gynecologic specialist in Atlanta. “They’re going to the ER every period, and they haven’t seen one doctor that said, ‘Maybe you have endometriosis.’” Doctors also overlook the needs of other groups, like queer or disabled people, with the disease. The idea that endometriosis is a disease afflicting “upper-middle-class, heterosexual women” means that queer, trans, gender-nonconforming, and low-income people can also be cut off from diagnosis and treatment, wrote Cara E. Jones, a gender studies professor at Sacramento State University. “This is important because not all endo bodies are female bodies.”

Baby-making has become the focus of reproductive health partly because of money. While endometriosis lacks funding, research and specialists, the fertility industry is flush with cash and innovation. “People will pay top dollar to try to get pregnant,” says Dr. Linda Griffith, a bioengineer and director of the Center for Gynepathology Research at M.I.T. Multiple doctors told me that the OB-GYN field tends to place a greater emphasis on the first half of the acronym: obstetrics. “To equate gynecology with pregnancy is like saying, ‘The only time a uterus is worth thinking about and studying medically is when somebody is trying to put a baby in it,’” Griffith said. This leads to brain drain from other specialities into the field of reproductive endocrinology and infertility (REI), Griffith points out. It also means fertility doctors are the ones with a vested interest in treating endometriosis. Desmond, the Slate writer, said that while she was grateful the IVF clinic helped her get rid of the disease, she also recognized it was good business: her pregnancy would increase its success rate and attract more patients. “My pain on its own didn’t motivate anyone to take action,” she told me over email.

The average gynecologist is a generalist and likely undereducated about endometriosis. “Pelvic pain is largely hated by OB/GYNs,” Dr. Megan Wasson, the department chair of medical and surgical gynecology at the Mayo Clinic in Arizona, wrote in an email. She doesn’t blame them, since most residencies and practices focus heavily on pregnancy-related issues. “It’s just really a lack of training.” Wasson added that even fertility specialists are increasingly using medication to help get endometriosis patients pregnant rather than dealing with the disease itself, meaning those mothers raising newborns will still be in pain. While infertility is concrete, pain is subjective: How do you prove your symptoms are debilitating enough to warrant more serious intervention from your doctor?

The only sure way to diagnose endo is with laparoscopic surgery, which involves putting tiny instruments through half-inch cuts in the stomach to detect, and potentially remove, excess tissue. It’s a minimally invasive process that is “quite safe in the hands of a specialist,” according to Frank Tu, a gynecological surgeon who treats endometriosis at a Chicago-area network of hospitals. But some doctors told me they generally avoid the surgery if it seems like an unnecessary risk, especially since endo symptoms overlap with other health conditions like fibroids, autoimmune disorders, or pelvic dysfunction. Though medication paired with lifestyle changes may be an effective option for most patients⁠ — I’ve been taking hormonal birth control for the past few years, which allows me to skip periods and keeps the pain to a low hum⁠ — it’s not a one-size-fits-all solution.

Beginning when she was 12, Victoria Jackson had unbearable period cramps that made her faint and vomit. Doctors recommended birth control, and although she tried more than ten different brands, the pain was so bad that she became addicted to opioids while at university in Canada and had to drop out. Still, doctors advised Jackson to hold off on surgery until she wanted to get pregnant, saying any lesions would just grow back (this is not necessarily true if the procedure is done correctly). When she was in her late 20s, she begged for a specialist referral while bawling to her general practitioner. “We should just [try to] have a baby,” she told her husband. “That way they will actually help me.” Jackson eventually found a surgeon in Georgia who discovered that she had stage-three endometriosis. All of her pelvic organs were fused together, and removing the tissue took more than four hours. Since her surgery in 2020, Jackson has only infrequent pain during ovulation and feels like she’s been given “a second chance at life.” She even has a 5-month-old baby. Thinking of those years of hurt makes her choke up: “If I had had proper treatment at 14, all of this pain, all of this suffering, all of this trauma would have not happened.”

Fertility should not be the only path to a diagnosis, but Tu warns that not “every young teenager who has had painful periods” should be sent “off to a surgeon to have a look inside,” either. Recent research has found that surgery may exacerbate the pain for some people with the disease. In an ideal world, band-aid solutions and surgeries would be replaced by noninvasive means of diagnosis, so that those without children don’t spend decades mired in pain and uncertainty. “We need to see endometriosis as a common debilitating chronic life disease that can start in teenage years,” says Griffith. “And not a fertility crisis in a 30-year-old woman.” Tests involving saliva and blood samples are in the works⁠, which would knock down a huge barrier to early treatment, but they still have to go through clinical trials before gynecologists can offer them.

A few endo specialists told me that by the time patients find them, the damage is so advanced that it requires more complicated surgery. For that to change, OB/GYNs need to be educated enough to offer a range of solutions, from medication and pelvic floor therapy to specialist referrals and surgeries. Those specialists also need to be more affordable and accessible to the most vulnerable groups, instead of clustered in major cities. And while there has been some research and funding progress in the field, as well as a new documentary about the disease that was executive-produced by Hillary Clinton, the most important thing any provider can do is show a genuine concern for someone’s pain, even when it’s unrelated to childbirth.

“I try to be as empathetic as I can,” says Dr. Peter Movilla, a gynecologic surgeon who specializes in the disease. He starts by telling new patients, “I’m sorry you’re here for this,” or, “It sounds like you’ve been suffering for a few years.” Clichéd? Maybe. But more than the detailed questions about symptoms or the bevy of tests he would offer during an appointment, this acknowledgment felt most significant to me. When I saw an OB/GYN last month, in a tiny office with chipping walls, her face stayed expressionless as I sped through my medical history, including that harrowing trip to the ER. I told her I was worried about endometriosis and thinking about pregnancy, partly out of genuine concern and partly to test out the fertility bias. She advised me to ditch the birth control to see how bad the cramps I’ve been masking really are.

But she didn’t say anything about what came next. I wanted a road map. I wanted options. I wanted empathy! What about the constant bloating? “That could be anything,” the OB/GYN said. Should I consider surgery or see a specialist? “This is kind of the start of a process to figure out what’s going on,” she said, rushing to her next appointment. The whole thing, including a Pap smear and internal exam, lasted less than ten minutes. I felt stuck on a hamster wheel: After 15 years of waiting and wondering about my condition, here I was, again, listening to a doctor talk about birth control instead of the root cause of my pain.

#Search #Missed #Disease

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