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Below The Belt: Unveiling Knowledge and Care Gaps in Endometriosis

bintou Diarra, A.B | Medical Anthropology, Brown University | July 6, 2023

Endometriosis affects roughly 10 to 15 percent of women and girls of reproductive age globally—and these numbers only reflect those who are aware of the condition. Often involving the pelvic tissue, endometriosis is marked by the growth of cells similar to the endometrium, or the lining of the uterus, outside of the uterus. The growth can spread to the ovaries, fallopian tubes, bowel, and bladder. Despite the prevalence of endometriosis, the condition remains misunderstood and underdiagnosed, and research efforts underfunded. Hillary Clinton and Rosario Dawson are working alongside various thought leaders to make these circumstances a thing of the past. Below the Belt: The Last Health Taboo stands as the culmination of their efforts in a large-scale fight. The documentary spotlights four patients as they navigate a care system with more questions than answers, to unveil current knowledge and care gaps in endometriosis. 

The film opens with patient Jenneh, who is admitted to the emergency room with severe abdominal pain. This marks the 7th time that she is admitted to the hospital with these symptoms in the past two years, and yet, they treat her with pain medication and assert that she is normal. Upon leaving, Jenneh speaks a heartbreaking truth that mirrors the reality of others like her. According to the literature, people with endometriosis can expect a gap anywhere from 4 to 11 years between the onset of their symptoms and a diagnosis. “Follow up with your OBGYN. That’s not anything we haven’t heard before,” she says. Jenneh finds herself in and out of hospital systems and clinics with specialists who are unable to hone in on her unique, embodied, circumstances. 

Evidently, knowledge gaps divest even the most skilled professionals of the ability to affirm others’ pain. According to the documentary, 63% of general practitioners feel uncomfortable diagnosing and treating endometriosis. What’s worse, over half cannot name three symptoms of the condition. Medical professionals cannot validate what they do not think to look for. Endometriosis specialist David Redwine, MD, states this best: “Something doesn’t make sense because there’s ignorance and misunderstanding among the people taking care of women with endometriosis. The doctors believe the wrong things.”

It is not enough to know of the condition. Ken Sinervo, MD, the Medical Director at the Center for Endometriosis Care, spoke to the issue of myopia in the medical profession, especially when it comes to women’s embodied experiences. Some specialists miss endometriosis when it does not present in the conventional ways they’ve been taught. For example, many healthcare professionals assume that endometriosis cannot be found on the bowel—a major misconception that amplifies existing care gaps, and with them, patients’ feelings of doubt about their own bodies. 

This is one among the many misconceptions that health professionals are only beginning to unpack. Heather Guidone of the Center for Endometriosis Care cites outdated theories regarding menstruation as the source of many misconceptions about the cure. Within textbooks are false notions about the ability of pregnancy and hysterectomies, or the removal of the uterus, to cure the disease. Under this framework, menstruation is the pathology, and the cure is anything that will prevent it from happening. Evidently, these beliefs, which span an entire century, have far-reaching effects not only within the world of endometriosis care, but also on our understanding of embodied processes like menstruation.

It is important to note that current conditions also have material implications for those impacted. According to the Australian and New Zealand Journal of Obstetrics and Gynecology, 1 in 6 people with endometriosis lose at least one job as a result of their symptoms. Unfortunately, patient Laura is among them. Despite experiencing symptoms since she was 13 years old, Laura did not receive a diagnosis until she was 30 years old, and at that point, it was virtually impossible for her to work. In the documentary, we also meet her father, who affirms that a timely diagnosis would have made a difference. And this does not just make a difference when it comes to work. The film highlights an Advances in Therapy finding that delayed diagnosis of endometriosis has a direct correlation to the severity of symptoms and infertility rates.

Patient Kyung’s experience reflects the challenges that arise as a result. She looks to start a family with her husband, but the realities of endometriosis add an air of uncertainty to their plans. Between 30% to 50% of people with endometriosis experience infertility, and this is largely tied to the progression of the condition as patients wait to receive an accurate diagnosis. Improving the diagnostic gap is about reaching women while they are still girls, but care gaps still remain. Patient Emily, 17, has seen a number of specialists, and her doctors’ directives still miss the mark. Her mother explains that despite her willingness to try different forms of birth control pills and different pain medications, nothing has worked to diminish Emily’s symptoms.

We can no longer delay the day of reckoning within the sphere of women’s health. Below The Belt underscores the reality that filling gaps in endometriosis care is about more than just informing healthcare professionals about the nature of the condition. It is about eradicating deeply-entrenched notions regarding gender and feminized bodies to create a liberatory future where women do not suffer needlessly.

 

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