There are two moments in her life, Shannon Cohn says, when pain overtook her completely.
“The time when I was a teenager,” she says, “I remember literally lying on the bathroom floor alternating between cold sweats and hot flashes because the pain was so intense.” And then, years later: childbirth.
“That was the only time when I’ve had pain so much so intense that my body literally broke out in a full body sweat. So that tells you the intensity and the power of the pain that people deal with.”
Cohn, the Mississippi-born filmmaker behind the documentaries Endo What? and Below the Belt, has made a career out of exposing injustice. But the injustice that would define her life’s work wasn’t one she found on assignment. It was the one she carried inside her own body.
Like “countless other people who have endometriosis, whether they know it or not,” her symptoms began at 13 and worsened through her teenage years. She did what girls are taught to do: endure.
She went to her pediatrician. Her primary care doctor. The school nurse. “People who had been amazing if they had known about endometriosis,” she says, “but instead, I heard like a chorus of, ‘It’s not a big deal. This is all part of being a woman.’”
Her grandmother, well-meaning and loving, told her, “The women in our family have always had bad periods. It’s just part of it.” Cohn remembers thinking: How does everyone survive? Because this is terrible.
At 16, a doctor accused her of trying to get attention. “I remember thinking as a 16-year-old, this is truly insane,” she says, still incredulous. “I’m a 16-year-old girl. I know how to get attention, and complaining about pain from my private parts is not one of them.”
That moment cracked something open.
“It was kind of an unveiling for the first time,” she says, “where you realize that the stewards around you—the people who are maybe supposed to be protecting you—don’t know everything. And you can be alone.”
She was alone for 13 years.
She “sucked it up,” played sports, went to school, went to law school, and traveled. She planned her life around anticipated agony. She saw GI specialists for gastrointestinal symptoms, neurologists for headaches, and gynecologists for pelvic pain. “No one is putting the pieces together,” she says. “Not once did I hear endometriosis.”
She was 29 the first time anyone said the word.
By then, she was already a filmmaker. An NYU film school graduate. A woman who had hitchhiked around the world on sailboats for a Nat Geo travel adventure series—with a two-year-old on her hip. “That was insane,” she laughs.
She never intended to make a film about endometriosis. “It was just my lived reality.”
Then she had her second daughter.
While breastfeeding, she came across a statistic that stopped her cold: daughters and sisters of women with endometriosis have a sevenfold increased risk of developing it. “That scared me so much,” she says, “that I went from just a patient to an advocate overnight.”
When it’s you, you survive. When it’s your child, you fight.
“I think that’s the case with so many people,” she says. “We fight for ourselves, but when someone we love is threatened… I think we fight with a different fire.”
She looked at her daughters and saw “the potential of life that we all see, and the promise of so much of their future.” The idea that they might be minimized, dismissed, or broken by the same system broke her heart and propelled her forward.
She started interviewing women. Doctors. Researchers. She discovered that in the 20 years since her own symptoms began, almost nothing had changed. The diagnostic delay was still seven to ten years. Frontline providers still didn’t recognize the disease. Dismissal was still widespread.
“If the institutions weren’t going to change,” she says, “then I thought, well, maybe storytelling would.”
First came Endo What?—an educational film designed as a fast-track for patients. Instead of spending a decade ricocheting between specialists, Cohn wanted women to watch one hour of clear, accurate information and “get to where you need to be to start trying to find specialized care.”
Then she realized education wasn’t enough. The masses needed to feel it.
Below the Belt humanizes endometriosis in a way statistics never could. It follows four women navigating infertility, financial ruin, delayed diagnoses, and excruciating pain, all while the healthcare system shrugs.
“I say it’s the most common, devastating disease that most people have never heard of,” Cohn says. “Now they’re starting to hear about it, but they still don’t quite understand the devastating impact that it wreaks havoc on lives in so many unseen ways.”
The film became more than a documentary. It became a lever.
Cohn screened it at the United Nations. At the World Economic Forum. At the Clinton Global Initiative. For all 27 institutes of the NIH, 20,000 employees, and directors in attendance. The goal? To entice researchers outside the women’s health silo.
“If there’s something I know in my decades of knowledge,” she imagines them thinking, “maybe I know something that I can contribute.”
She screened at Google, Microsoft, and Salesforce. Corporations introduced workplace accommodations as a result. She co-taught a bioethics class at Harvard Medical School, showing the film to first-year students.
“I’ve learned about so many conditions this year,” students told her, “but I will never forget about endometriosis.”
Story had done what bullet points could not.
Then came Washington.
In a polarized era, Cohn did something that feels almost cinematic: she brought Republicans and Democrats together around a disease that affects one in ten women.
She worked in a bipartisan way with Senator Orrin Hatch and Senator Elizabeth Warren to get endometriosis added to the Department of Defense’s Congressionally Directed Medical Research Programs list, unlocking crucial funding streams. Later, she collaborated with lawmakers, including Mitt Romney and Shelley Moore Capito.
Cohn had seemingly pulled off a magic trick, getting both sides to agree on something. “I think it’s just focusing on the common ground,” she says. “Let’s stay away from the things that make us different, and let’s focus on the things that we all do care about.”
Her approach is pragmatic, almost disarmingly so. “When you go to Congress, you have to have a very specific ask,” she explains. Not vague pleas for change, but clear directives: add the disease to this list. Allocate this amount of funding.
“If you give them a specific ask, if they can do it, they’ll do it,” she says. “They’re reasonable people on both sides of the aisle.”
She stood on Capitol Hill advocating for the Endometriosis CARES Act, calling for $250 million in research funding. She continues to push for what she calls “a transformative amount of research funding—hundreds of millions of dollars—so that we can finally answer the major questions about this disease.”
Right now, she’s fighting simply to protect existing funding amid budget cuts. “Not even asking for more funding, which we desperately need,” she says, “but saying, let’s just make sure it doesn’t go anywhere.”
Her wish list is practical and visionary: a non-invasive diagnostic tool, like “a blood test or saliva test that has 100% accuracy.” Targeted therapies instead of “sledgehammer treatments.”
Insurance coverage for pelvic floor physical therapy and out-of-network specialists. A system that doesn’t force sick patients to coordinate their own fragmented care.
“The responsibility is put on you,” she says, “the patient who’s sick, to coordinate care and to put it together and to bring things to different doctors. It’s insane.”
But Cohn’s gaze has widened. In screening Below the Belt at global forums, she began to see endometriosis as “a microcosm of so many things.”
80% of patients with autoimmune diseases are women. Two-thirds of Alzheimer’s patients are women. Cardiac symptoms present differently in women and are underdiagnosed. “There are so many other types of conditions that are going through the same basic things,” she says.
As she entered perimenopause, she found herself back in the maze, going from specialist to specialist, dismissal echoing. “I felt like I was going through endo all over,” she says. “I thought that time in my life was over.”
It wasn’t.
Her next film examines the broader women’s health gap—a system built on a male model, leaving women under-researched, underdiagnosed, and undertreated.
“I’ll be working on women’s health as long as I can,” she says.
For a documentary filmmaker, the bond with subjects is sacred. Cohn speaks of the four women in Below the Belt with reverence. “There’s a lot of trust there,” she says. “I feel such a responsibility to make sure to get it right.”
They let cameras into operating rooms, into financial desperation, into fear. “You have to be so brave,” she says. “To let a camera crew in your most vulnerable, painful, scary parts of your life and to know that they’re going to broadcast this vulnerable time… I just have tremendous respect and gratitude.”
Cohn has interviewed hundreds of women. The details change. The themes do not.
“It’s amazing how I hear their individual stories, of course,” she says, “but the themes are the same.” The dismissal. The delay. The doubt.
“It breaks my heart,” she says, “because you see the hundreds of stories, and then you see how the system’s failing them, failing all of us.”
Her closing message is simple.
“I just want women to know to speak their truth and to know that it matters,” she says. “And to not stop looking for answers until they find someone who listens to them, takes them seriously, and helps them find answers.”
Those providers exist, she insists. Community exists. Support exists. Change is possible.
“Keep going,” she says. “It will get better. It can get better. There are answers. There are resources. There are other people just like you fighting.”
If history teaches anything—from the HIV/AIDS movement to every civil rights battle that required voices in the street and strategy in the halls of power—it’s that storytelling moves the needle.
Shannon Cohn knows this because she has lived it. She has taken a word she didn’t hear until 29 and projected it onto screens at the United Nations and on Capitol Hill. She has connected Hollywood to Washington, art to policy, and personal pain to federal budgets.
And through it all, her plea echoes the same refrain she heard in interview after interview, story after story:
Believe women.
Beginning March 17, Below the Belt is now available to stream globally on Apple TV, Amazon Prime Video, Google Play, and YouTube — making the film more accessible than ever for audiences around the world.
