New Documentary Aims to Give a Voice to Women Suffering from Endometriosis, a “Silent Disease”

My best friend Steph has suffered from endometriosis since she was 12 years old. “My period started at 11 (the summer of ’96), I had intense pain with cycles at 12, and had a diagnosis of endometriosis and surgery in April 2007,” she tells me.

Yes, it took her TEN years to get this diagnosis, something that’s not uncommon among other women.

According to a trailer for a new documentary titled Endo What?, 1 in 10 American women suffer from endometriosis (colloquially called ‘endo’), a disease that involves uterine tissue growing outside the uterus — in the Fallopian tubes, the abdominal wall, and the small bowel — and causes unbearably painful periods.

While most people treat it as simply painful periods, it’s so much more than that, and many women have pain all the time. As individuals in the documentary divulge, many stopped talking about their pain because no one believes them — including doctors. They often brush it off as “it can’t be that bad,” or in one woman’s case, was even questioned about her mental health. Because of this, many women suffer in silence.

This was true of Steph, too. Her pain started with her period, but gradually grew so that “more and more days leading up to my period were filled with pain; eventually I only had three or four days per month without pain.”

“It was so horrible,” she says. “Imagine hot pokers shredding your inside with each cycle. Now imagine that pain radiating down your legs and back.”

In high school, she stopped talking about it, as her family kept telling her that the pain was “normal for us Ziegler women.” Doctors would give her some variation of, “You’re overreacting, of course it can’t be that bad.”

She consulted five different Urgent Care doctors (visited when the pain became unbearable) and at least three gynecologists, until she found the doctor who would end up diagnosing her with endometriosis. When she finally went in for surgery her first time, they discovered that her uterus had adhered to her abdominal wall; one fallopian tube and ovary were stuck to the side of her uterus, and the other ovary was full of chocolate cysts. There were also adhesions on her bowel, but thankfully, “they had not perforated it.” The surgeon said that her uterus was so swollen, she looked three months pregnant.

And Steph’s experience was a normal one, as most women see between 7 and 10 doctors before getting a diagnosis and discussing ways to treat the painful disease.

This documentary wants to change this.

With the tagline, “More than a film. A tool to take control of your health,” Endo What? pushes women to advocate for themselves and speak out. Featuring interviews with the world’s top endo surgeons, researchers, practitioners, and advocates, it encourages women to stop suffering in silence.

“We have a tendency as women to subvert our pain and put everybody else ahead of us,” states one woman. “Fight it like it was for someone else’s battle. Because if you’re not well, you can’t be good to anybody around you.”

Endo What? is all about empowering women to take control of their health in the face of an institution that constantly disempowers them. Doctors brush off women’s “invisible pain,” and we concede to them. This documentary aims to inform the American public of the prevalence of this disease, and encourages women to fight for their health and comfort. While they admit that there’s not quick fix or easy answer, it’s possible for women to live an enjoyable life with the disease.

It’s time we stop buying into the myth that nothing can be done to treat our pain. “You have heavy periods. This is just the way it is.”

No, you don’t. And it doesn’t have to be this way.

Endo What? is available for purchase here.

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