This past week I had the opportunity to attend the premiere of a new endometriosis documentary, Below the Belt. Directed by Shannon Cohn (creator of Endo What?) and produced by Hillary Clinton, Rosario Dawson, Corrine Foxx, and Mae Whitman, the film follows four women through their experiences searching for solutions to unexplained debilitating symptoms.
Featuring medical experts, activists, and celebrities with firsthand endo experience, Below the Belt is a call to change how we currently approach this silent disease— and women’s health today.
If you have endometriosis, you might know the isolation and confusion that comes with the symptoms. First, there’s the challenge to come to a proper diagnosis, which often takes eight or more doctor’s visits and a slew of tests to find any answers. Next, the diagnosis and treatment of endometriosis are difficult to finalize. Every endo patient has individual symptoms. Some women may have ongoing, severe endometriosis pain whereas others may have minimal symptoms but become infertile.
If you’ve heard of endometriosis, you may have encountered the whirlwind of myths and misinformation surrounding menstruation, period pain, and ongoing symptoms. Many women who visit doctors for period pain are met with responses like, “Cramps are normal, you might just have a low pain tolerance.” Or they might be prescribed birth control pills, with the overarching notion that fewer periods means symptoms will go away. (Not true.)
The sad result of these all-too-common medical visits is that not only do they not resolve symptoms, but they don’t even begin to address the reality of endometriosis. Living with endometriosis negatively affects nearly 176 million women as well as their loved ones, intimate partners, and workplaces. A recent study found that one in six women with endometriosis have lost jobs because their symptoms prevented them from working. As one woman in the film stated, “It feels like someone is taking a blow torch and burning my insides.”
The film ignites a conversation for medical professionals and women to dig into finding better solutions for endometriosis, a longstanding invisible (and societal) disease.
Endometriosis Research and Data So Far
There has been little progress in endometriosis treatment guidelines for several main reasons. First, there is no simplified way to diagnose. There’s a wide range of endometriosis signs and symptoms that vary from woman to woman. Second, there are still very few endometriosis specialists today. Those who are qualified to guide endo patients in managing symptoms can be difficult to access or afford. Third, as a disease, endometriosis is still largely misunderstood in modern medicine— which is why people are speaking out and demanding a change.
Here are some facts, many of which Dr. Iris Orbuch, who specializes in the Treatment of Endometriosis and is the Director of the Advanced Gynecologic Laparoscopy Center in Los Angeles, stated during the panel discussion after the movie premier:
Up to 50% of female infertility cases are caused by endometriosis.
More than 80% of OB GYNs can’t perform the required excision surgeries required for advanced endometriosis patients.
Excision surgery, one of the only viable treatments for many, can take hours per procedure and can come with a long recovery time.
Both ablation and excision surgery for endometriosis are currently billed by insurance as the same procedure when they’re entirely different and take a significantly different number of hours to perform.
Endometriosis funding is about $7 million per year, which isn’t enough for something as prevalent as diabetes (Type 2 receives $1 billion in funding per year).
The average endometriosis patient is on up to ten medications by the time they’re diagnosed.
It’s not uncommon for it to take 5 to 10 years for endometriosis to be finally diagnosed.
These are only the most notable statistics. You can learn more facts and hear from endo warriors in the Below the Belt film.
Why aren’t there enough endometriosis treatments and resources?
If you care about women’s health, chances are you wonder about this same thing. Shannon Cohn began her quest to spread endometriosis awareness after over a decade of witnessing the healthcare system fail women like herself. In her 2017 TEDx Talk, “The Most Common Disease You’ve Never Heard Of,” she initially laid out the reasons why this silent disease remains so unknown, underresearched, and unresolved.
Lack of awareness. Society is highly unaware of endometriosis. Many who have heard of it still lack a full understanding of what it is, what symptoms it causes, and who to reach out to for help.
Gender bias. For centuries, there have been biases in medical trials and treatments that continue to limit progress for female-specific conditions.
Fragmented reproductive care. Whether it be endometriosis or other women’s health issues, it’s still difficult to find integrative treatment. Women who are fortunate enough to find physical, mental, nutritional, and reproductive care plans can benefit greatly, but this isn’t practical for a large percentage of the population.
Uninformed healthcare providers. Medical schools today often don’t include endometriosis in their curriculum. Unless a healthcare provider specializes in the disease, many doctors don’t know what to look for when it comes to endometriosis symptoms.
Commercial interest of the healthcare system. Profit-driven medical incentives can limit access to necessary treatment. High costs of medication, specialist appointments, procedures, and medical therapies remain unthinkable for patients who can’t afford insurance or out-of-pocket expenses.
Stigmas about women’s reproductive health. Talking about periods, vaginas, and women’s health topics remains “taboo” in much of society. There’s a stigma that women shouldn’t raise concern for uncomfortable experiences that relate to their bodies.
Generational misinformation. Many women are taught that debilitating period symptoms are normal and they should bear the pain. Some myths and misunderstandings get passed down from woman to woman, which makes it hard to get clear on what’s happening when something doesn’t seem right.
When will doctors start paying attention to millions of women with unexplainable symptoms? How many failed attempts at treating period pain will it take to fund more research for this disease? In the meantime, how can women manage their symptoms without losing their jobs, fertility, or dignity?
These are the questions this film encourages us to confront. Women want answers for endometriosis, pain, and dismissed experiences that debilitate them from living fully. If you or someone you know has experience with endometriosis, this film can connect you with the courage to take the next step.