By Timothy Bonis
Premiering tonight on PBS, the film Below the Belt sheds light on endometriosis by documenting four women’s experiences with the disease.
Endometriosis is a silent crisis. One in ten women have it, yet, on average, people with the condition see seven doctors before they get diagnosed. Many experience severe pain, and the disease costs the American economy $80 billion annually in lost productivity, but the standard treatments are outdated and ineffectual.
Below the Belt exposes the failures in practice and policy that have led to the poor state of endometriosis care. Medical students usually don’t learn about endometriosis in medical school, and as a result, most general practitioners can’t recognize it. The majority of gynecologists treat endometriosis with hormones — which have serious side effects and bring little relief — and an ineffective surgery called ablation. Others continue to recommend the 20th-century approach, a hysterectomy. This dismal selection of treatments reflects the state of endometriosis research; historically, the disease has received less than $10 million in research funding per year (compared to $1 billion for diabetes, an equally common condition among women).
Still, Below the Belt is more than an exposé of how the medical system has failed patients with endometriosis. It shows that, for a relatively unknown crisis like endometriosis, poignantly sharing what patients endure does make a difference. As director Shannon Cohn told me in an interview, “if we can change hearts and minds, we can change policy.”
One of the most powerful stories featured in Below the Belt is that of Emily Hatch, a happy teenager from Massachusetts first afflicted with endometriosis at thirteen. Emily describes her experience to her grandfather, the late Senator Orrin Hatch, who admits he knew nothing about endometriosis before Emily got sick. By lobbying Senator Hatch and Senator Warren with a plan for Department of Defense funding, Emily helps win millions for endometriosis research. To be sure, being a senator’s granddaughter is exceptional, but Below the Belt highlights how those who see endometriosis firsthand have their understanding of the disease enhanced or transformed.
Below the Belt also uses endometriosis as a lens to examine how bias and inequality affect health care. For one, the medical system treats women differently from men. Studies have repeatedly demonstrated that doctors trust female patients less than male patients. In the emergency room, women with abdominal pain wait longer for painkillers than men, and are more likely to be offered sedatives instead. Doctors routinely dismiss endometriosis symptoms as “bad periods” and hypochondria. One has labeled the disease a “garbage bag diagnosis.”
Race and socioeconomic status also affect a patient’s experience. In the film, Jenneh, a Black nurse, starts bringing her boyfriend, a white software engineer, to her gynecologist appointments because the doctor is more responsive with him present. Additionally, many patients who finally get the proper diagnosis find endometriosis care unaffordable. For many women, the best treatment is a surgery called excision, but only a few gynecologists perform it, and they’re usually out of insurance networks. In Below the Belt, the father of one endometriosis patient gets a second mortgage to pay for his daughter’s excision; Jenneh pays for hers with credit cards since her insurance refuses to cover it.
What Below the Belt highlights most clearly is the extent to which ignorance rooted in stigma affects endometriosis care and women’s health. As Cohn told me, health care providers and policymakers usually mean well, but the majority are critically ill-informed about this issue. Most primary care doctors admit they can’t recognize endometriosis, it consistently goes undiagnosed, the care guidelines are rarely updated, and key policymakers like Senator Hatch (once chairman of the Senate committee dedicated to health) don’t hear about it.
This ignorance is easily explained. The care guidelines for endometriosis are threadbare because there is so little research. Policymakers ignore endometriosis because our culture rarely discusses women’s health, often treating it as taboo. (There are five-thousand euphemisms for menstruation.) By encouraging people to discuss endometriosis, raising awareness, and securing research funding, women like Emily Hatch fight society’s ignorance and advance needed change.
Importantly, Below the Belt is not merely a documentary of how a few patients spread the word and make a difference. As Cohn puts it, her film is also “a toolbox for changing policy.” It does for its viewers what Emily Hatch does for her grandfather: it shows what women with endometriosis endure, and thus powerfully demonstrates why we must learn more about this disease.
Below the Belt is available for streaming on PBS beginning at 10 pm on June 21.
