It’s a week before my period, and my insides are exploding like fireworks. I’m running a fever, the skin on my distended stomach is stretched out like a canvas, my legs feel leaden – dead weights that can only transport me from the bedroom to the bathroom. I lie in bed with a heating pad on high in the middle of July and watch the hour hand pass over the twelve as life carries on without me. When the throbbing pain in my pelvic area sharpens, what I imagine being stabbed feels like, I roll out of bed onto the hardwood floor and stare at the ceiling.
My boyfriend looks as helpless as I do. “You need to go to the ER,” he tells me, but as a person diagnosed with endometriosis for over a decade, I know that I will be the last person to be seen. I am not dying or bleeding from my head. I will sit upright in a cold plastic chair until patients with more visible conditions get treated. I go anyway. Maybe this time, I’ll luck out, and the doctor on-call will have experience with endometriosis.
I never get that doctor. “Why don’t you take birth control?” he asks me as if I’ve been negligent or somehow responsible for my condition. I know that stopping a period as a cure for endometriosis was dispelled ages ago. I leave the ER in worse shape than when I arrived, dismissed, deflated and exhausted. The stress and depression exacerbate the pain. I feel my life shrinking as if the walls are closing in on me.
When will I be seen? It’s a question I and most endo sufferers wonder while trying to articulate an invisible, stigmatized illness with no cure or viable treatments and minimal medical support. In Below the Belt: The Last Health Taboo, a new documentary about endometriosis available on PBS Passport, director, producer and fellow endo sufferer Shannon Cohn demystifies a disease that affects over 200 million women worldwide who are bone tired of being ignored.
The 50-minute film, executive produced by an impressive cohort of A-listers, including Hillary Rodham Clinton, Senator Elizabeth Warren and actress/activist Rosario Dawson, takes aim at the pervasive stigmas and taboos around women’s health that account for a lack of research dollars and offers an answer to why the needle isn’t moving despite a flurry of media exposure. It also turns a sharp eye on why women are dismissed, and often gaslit, by their healthcare providers, most disturbingly OB-GYNs who specialize in women’s health.
As elusive as endometriosis is (to be clear, the disease remains a mystery because it’s woefully underresearched), the statistics are black and white, and the film makes good use of these indisputable facts. It also adds faces to those statistics by highlighting the stories of four women with endometriosis navigating work, relationships, financial hurdles, emotional health, fertility, and the neverending quest to alleviate their pain.
“I thought I was dying or had some kind of rare disease,” says Jenneh, a nurse and one of the film’s subjects. It’s a common sentiment for those living with endo, but the fact that Jenneh went to medical school and still didn’t know of the disease’s existence underscores the lack of medical training medical professionals receive in school, which amounts to an hour of education. While heartbreaking, it’s little wonder that half of all healthcare professionals can’t name its three main symptoms, and 100,000 unnecessary hysterectomies are performed to treat endometriosis. In my interview with Cohn, she highlighted the broader picture that all Americans face. “In the U.S., the fact is that good healthcare is regarded as a privilege, not a human right. The system is not built to ensure all people have equal access to good care, so oftentimes, people with endometriosis are relegated to subpar care.”
When I was diagnosed with stage 4 endometriosis in my mid-twenties, doctors told me that endometriosis was also known as “the working women’s disease.” Their medical advice was for me to find a partner and get pregnant fast. Below the Belt tackles the emotional rollercoaster and financial challenges of having a 50 percent chance of infertility with artist Kyung Jeon-Miranda’s journey of trying to conceive and using art as a coping mechanism to express her fears, grief and anxiety. “There’s an underlying sadness in most of my work,” she says. “The lack of motherhood, not being able to have children. There’s a weight.” Her work is also profoundly intimate and moving, perhaps the closest one without the disease can get to feeling endometrial pain and the loss associated with it.
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While we see Jeon-Miranda’s dream of motherhood realized at the end of the film, this outcome is not always possible for many women living with endo. To this, Cohn, who has two daughters but also experienced two miscarriages, says, “The fact is that when a disease like endometriosis beats down on a body unchecked for years, it goes to follow that infertility may be a result. We deserve better.”
Cohn is a thoughtful but formidable filmmaker and activist, determined to affect measurable change through education and advocacy, which has increased research funding and created opportunities for endometriosis to be seen, heard, and understood. Below the Belt’s team of heavy hitters broadens that visibility by using their platforms to share its call to action and impact campaign. Elizabeth Warren makes a brief appearance in the film, meeting 17-year-old endo patient Emily, who is also the granddaughter of former Senator Orrin Hatch. In 2017, Warren and Hatch signed FY 2018, the first U.S. bill to include federal research funding for the disease. And according to Cohn, Hillary Rodham Clinton was “all in” as an executive producer after viewing the film.
Below the Belt humanizes a common but gravely ignored disease and the uphill battle so many who have it meet on a daily basis. As a women’s health writer and person living with endometriosis, I know that 1 out of 6 women will see an average of 14 doctors, wait 7 to 10 years to get a definitive diagnosis and lose at least one job because of its symptoms. I also know my knowledge of the disease is rare, which is why the film is a necessary must-see for all women and the people who love them. For those of us with a uterus, particularly younger generations, to realize that painful periods are not just a “part of becoming a woman” is not just a game-changer; it’s a lifesaver.
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