Chances are you know someone with endometriosis — or “endo” for short. The pernicious disease, in which tissue similar to the endometrial lining is found outside the uterus, affects nearly 200 million people worldwide, including more than 6.5 million in the United States. On average it can take about seven to 10 years to get diagnosed — and, without a diagnosis, it’s nearly impossible to get treatment. Delayed diagnosis can lead to protracted pain and suffering, infertility, job loss, social and psychological impacts, and decreased quality of life. Despite the prevalence and profound effects, people with endometriosis are commonly not believed when sharing their experiences and seeking medical help. And research to develop better options for getting a diagnosis and treatment remains woefully underfunded.
A new, hour-long documentary from director Shannon Cohn, called Below the Belt seeks to catalyze change by bringing endometriosis into mainstream conversation. Premiering on PBS on June 21 (and in talks for wider distribution), the film follows four women in the US navigating endometriosis symptoms and treatment, while weaving in jaw-dropping stats and the voices and experiences of a chorus of others. The result is a powerful illustration of the disease’s impact and debilitating effects, all-too-common barriers to care, and the pains of navigating a fractured healthcare system. Similar to Endo What? — Cohn’s 2016 documentary on the subject — Below the Belt cuts through myths with a clear-eyed look at the condition and the systems that make access to quality care so challenging and expensive. And, if you have endometriosis, it’s an informative and accessible film that you can share with friends and family to help explain what it’s like to live with the disease and help get them up to speed.
Actress Rosario Dawson, who served as one of the film’s executive producers alongside Hillary Rodham Clinton, says, “Below the Belt aims to revolutionize the status quo so that people with endometriosis get what we deserve: the right to live healthy, informed, fulfilling lives.”
If you’re living with endometriosis (or suspect you are), here are three ways you can advocate for better care and navigate life with the condition.
Endometriosis is a complex disease, so working with a doctor with specialized training at an endometriosis center can help you build a treatment plan tailored to your particular situation. As highlighted in Below the Belt, 63% of general practitioners feel uncomfortable diagnosing and treating endometriosis, according to a study from Gynécologie Obstétrique & Fertilité, and half couldn’t name the three main symptoms of the disease. And, 82% of gynecologists admit to not being able to perform advanced laparoscopic surgery, according to research in the journal Ultrasound in Obstetrics & Gynecology. Finding specialists trained to identify and treat endometriosis can help you get quality care with the most up-to-date techniques that suit your needs.
When it comes to endometriosis, myths and confusion abound. Here’s a quick primer to help you as you navigate what course of treatment is best for you:
Connecting with folks who get it can make all the difference when navigating endometriosis. To find a “friendo,” seek out support groups and endometriosis events online or in your region. Since March is Endometriosis Awareness Month, it’s a hot time for endometriosis-centered conferences and gatherings. Here’s a sampling of organizations and events:
This nonprofit organization, founded by Tamer Seckin, MD and actress Padma Laksmi, hosts an annual Patient Day with a full slate of speakers live streamed from New York City. This year’s weekend-long gathering has passed, but you can view recordings of past events on their website. They also organize teams to run 5Ks and marathons to raise money for endometriosis advocacy and research.
Jenneh Rishe, a registered nurse and one of the patients featured in Below the Belt, started this nonprofit dedicated to raising awareness, promoting reliable education, and increasing research funding. Beginning in summer 2023, the coalition will also be hosting virtual support groups via Zoom, which will “provide an opportunity for endometriosis patients to share personal experiences and learn coping strategies,” according to the website.
In addition to airing on PBS at the end of the month, you can catch live film screenings, both online and in-person, each paired with a panel discussion with endometriosis experts — and audiences filled with fellow endometriosis patients and allies.
Founded by Les Henderson, endoQueer offers LGBTQIA+ led support and resources for endometriosis (and similar illnesses) through events, a private Facebook group, a public Instagram account, a newsletter, and a resource list on their website. Henderson and a team of volunteers also advocate for increased research funding and raise awareness of the disease’s effects on all people, not only cis-women.
Lauren Kornegay founded Endo Black, an organization that supports African American women and women of color with the life-altering chronic illness, because she knows on a personal level the importance of connecting with people who share similar experiences. With a mission to “educate, engage, and encourage endo sisters,” the organization provides resources and organizes an ambassadors program, as well as social and educational events. On March 25, the team will host their third Endo Black Advocates and Allies Conference in Maryland.
“I just want to encourage people,” Kornegay told me in a phone call. “I think it’s important for people to recognize that this is a life-altering disorder and this is a full-body disorder, but this is not the end of the world. There is a way to manage. You have to figure out what way works for you. And it will take time.”
Photos courtesy of Below the Belt film.
Julie Smith Schneider
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