This director has made a film about endometriosis inspired by her own experiences

Shannon Cohn experienced her first symptoms of endometriosis when she was just 16. But she didn’t hear the actual word mentioned until she was 29.

“So this yawning 13-year gap of not being believed actually by healthcare providers, being told my symptoms were in my head or part of being a woman, or I was exaggerating,” she says.

To help other women, the American filmmaker, lawyer and activist has directed a documentary called Below the Belt about this chronic disease, which is far more common than many people realize.

Endometriosis affects roughly 10% of girls and women of reproductive age globally, according to the World Health Organization. That’s an estimated 190 million people.

It affects the pelvic region and can cause severe pain, nausea, fatigue, as well as depression and anxiety. Many women also experience infertility.

There is currently no cure for endometriosis, and current treatment options can only attempt to control symptoms. Not to mention, limited awareness of the condition by healthcare providers can lead to significant diagnostic delays.

The former Democratic presidential candidate Hillary Clinton is one of the executive producers of Below the Belt. She says the groundbreaking film aims to shine a much needed light on a little-talked-about disease.

“So much of women's health is still not given the attention it deserves. And endometriosis is a big part of that. It's a disease that has been overlooked, ignored and dismissed for far too long,” she says.

Shannon Cohn spoke to Robin Pomeroy, host of the World Economic Forum’s Radio Davos podcast, about why her experience of being an endometriosis sufferer inspired her to make a documentary.

"Absolutely. I can guarantee you every woman listening to this podcast right now, if you were to ask her, “Hey, have you ever gone to the doctor and somehow felt discounted in what you said about your body, about your symptoms?”, almost 100% if not 100% would say yes. It is a universal experience as a woman to somehow be doubted directly or indirectly about symptoms that you have when you go into a healthcare provider's office.

"We have screened this film on every continent except for Antarctica. I ask audience members, who has not been believed? Without fail everybody raises their hand and smiles because it's a common understanding, even though it's not funny. But yes, it's a universal situation."

"Yes, so Jenneh is a nurse. At the time, she was a nurse at the University of California, Los Angeles Medical Centre. So a world-renowned medical centre. And she was having symptoms that she could not identify as a healthcare provider, and nor could the healthcare provider she was visiting identify what was going on. In fact, she went to the emergency room multiple times over a number of years and never got answers."

"It's basically the same, which is deplorable. I mean, it doesn't matter. There was an all-party parliamentary working group in the UK ... and they found that 59% of sufferers see their GP multiple times before they even are referred to a specialist for endometriosis. It's the same situation in France ... women are still waiting 8 to 10 years. That’s an 8-to-10-year diagnostic delay, and it’s the same everywhere. I will say that with women of colour or underserved communities, it's longer. There's a lot of research showing that women of colour are typically diagnosed with sexually transmitted diseases rather than gynaecological diseases.

"We screened this film in Dubai recently and someone came up to me after and she said, 'You know, this film is so important for the Middle East because girls won't even tell their same-sex family members about their symptoms.' So, depending on where you are in the world, the menstrual taboo is strong and ever-prevalent. Yes, films like this can help break that taboo, but there's a lot of work to do."

"We screened this film on Capitol Hill on 1 March 2023 for members of Congress. And this screening was co-hosted, by Senator Elizabeth Warren and Senator Mitt Romney. And at the screening, of course, Senator Romney joked, 'I think that this may be the only bipartisan effort going on in Capitol Hill this week and certainly about women's healthcare'. This is the only thing going on with both sides of the aisle. And it's framed as a human issue, it's not a political issue. It's something that both sides of the aisle can get behind because it has such an enormous impact on all girls and women in every jurisdiction."

"With Secretary Clinton, actually, it was Senator Hatch. As you and probably many of your listeners know, a lot with politics, law and all of the large issues that feel complicated around the world, it all starts with people and personal connections to issues ... And that's what happened with this film, with endometriosis, it was personal to Senator Hatch, he cared about people who had it and he realized he needed to do something.

"It was important to us that all of the initiatives remain carefully bipartisan. And he said, “You know, I'm going to reach out to Secretary Clinton and see because she's obviously historically interested in women's health issues”. He did, and she watched a cut of the film and, to her credit, she said, “I'm here to help and I want to be a part of this”. And of course, we're endlessly grateful to her for being a part of it. Everybody kind of put their weight behind it, using their platforms to say, OK, enough is enough. Let's shine a light on this issue."

"Yes, and I think that it's a universal reaction to the parents in the film. There was a father taking care of his daughter and a mother taking care of her daughter, and the helplessness they felt. And obviously they love. We all love, if we have children – we fight for our children as we might never fight for ourselves or our parents, spouses or partners. I think that's a universal truth. So to see them helpless in a situation where they're trying their best to fight. Like the father in the film who has limited financial means and he's working within this broken system that requires money he doesn't have. And he takes out a second mortgage on his house just to try to get his daughter well. I still get emotional when I watch some of the scenes with him because I understand that. And I think that is a universal thing – when parents want the best for their children, but they're not able to provide it."

"Yes, absolutely. It's not just about widespread awareness, there has to be an overhauling of medical education, no small feat. But we're working on those things. It's all about strategic partnerships, something that you guys know about. Bringing together meaningful collaborations of people who have aligned goals and say, OK, let's focus on this solution, and let's reverse-engineer and let's get there in a really practical way. And we're doing that. We're partnering to educate first-line medical providers so they get the resources and the information they need to diagnose symptoms earlier and refer them to specialists.

"Endometriosis, it's a perfect storm, I will say. It is so complicated. One person may have this symptom, another person's going to have a different symptom. What treatment may work for one may not work for another. And that's it even if, in a perfect world, everybody was able to access those treatments financially and geographically, all of the other things.

"But, as with every complex situation, we take it a step at a time and we're getting there. And I'm also optimistic about the next generation. I mean, let me tell you, the teenagers, I have teenagers, and the way that they navigate the world is revolutionary and promising and they call people out for their beliefs. And it may take a little bit of time, but I have great hope for progressive ideas and women's rights ultimately. It's not a straight line but, ultimately, I'm quite positive."

Sexual and reproductive ill-health accounts for one-third of the global burden of disease among women of reproductive age, so increased investment in women's and girls’ health is vital. And prioritizing women’s health can have long-lasting physical, social and economic benefits. Research shows that $300 million of investment into women-focused research could yield $13 billion in returns.

The World Economic Forum’s Women’s Health Initiative is working to enable positive change to improve women's and girls’ health. It aims to foster public-private collaboration to develop gender-based solutions to make healthcare more equitable.

This interview has been edited for length and clarity.