Below the Belt: the movie that lifts the taboo on endometriosis

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Below the Belt movie clip, various women: It took me almost ten doctors to find someone that actually believed my pain.

Dozens of doctors. I've seen so many.

I probably saw more than 35 physicians.

I've had blood test, I've had x-rays, I've had CT scans...

Sugar level tests, ultrasounds, colonoscopies, upper endoscopies.

I don't even know some of the names of the tests that I've had because there's been so many.

So many ultrasounds. All were negative.

I even had a laparoscopy, which originally they say didn't show anything when in fact I had stage four endometriosis.

Robin Pomeroy, host, Radio Davos: Welcome to Radio Davos, the podcast from the World Economic Forum that looks at the biggest challenges and how we might solve them. This week: a disease that affects hundreds of millions of women, but that many of us have simply never heard of.

Hilary Clinton, Executive Producer, 'Below the Belt' : More than 200 million women around the world suffer from endometriosis, yet it often takes up to eight doctors and ten years to get even a proper diagnosis.

Robin Pomeroy: A new documentary film exposes the reality of endometriosis - a disease that affect so many women - not just with excruciating physical pain, and the risk of complications including potential sterility, but the fact that it’s so hard to get diagnosed and treated.

Shannon Cohn, director, 'Below the Belt': Arguably the most common devastating disease that most people have never heard of. It affects at least one in nine women. It is the cause of up to 50% of infertility cases in women.

Robin Pomeroy: The director of the film Below the Belt brings her own experience of being disbelieved - even gaslighted - by doctors - something she says is common around the world.

Shannon Cohn: I first had symptoms of endometriosis when I was 16, yet didn't hear the word until I was 29 years old.

Robin Pomeroy: Her movie is changing policies in the U.S. Congress and has the backing of politicians on both sides of the political aisle, including Hilary Clinton.

Hilary Clinton: It's a disease that has been overlooked, ignored and dismissed for far too long.

Robin Pomeroy: Subscribe to Radio Davos wherever you get your podcasts, or visit wef.ch/podcasts.

I’m Robin Pomeroy at the World Economic Forum, and with this look ‘Below the Belt’ at endometriosis…

Jenneh Rishe, nurse and endometriosis patient: For the first time, we're hearing about a disease that's so common. This was the first time I had ever heard of it. And that's kind of crazy. It's crazy to me.

Robin Pomeroy: This is Radio Davos.

Jenneh Rishe: It's really crazy to me.

Robin Pomeroy: Shannon Cohn is a filmmaker, lawyer and activist. Her films and TV series have aired on PBS, NatGeo, Discovery Channel, Amazon and Netflix. Before becoming a filmmaker, she practised international law and was part of the legal team that prosecuted Enron. I'd like to talk about that, but we're not. We're going to talk about her latest film, which is called Below the Belt. Shannon, welcome to Radio Davos.

Shannon Cohn: Thank you very much. It's an honour to be here.

Robin Pomeroy: Thanks for joining us. Why don't you tell us in a nutshell what the film is?

Shannon Cohn: Below the Belt is a feature documentary that looks at - goodness - so many things in women's health, like gender bias in medicine, racial bias in medicine, the menstrual taboo that as society around the world we have in varying degrees, and impact on women, financial barriers to care - all of the larger systemic health care issues that all people grapple with, but through the lens of a single condition called endometriosis. And I know at this point maybe I should say what endometriosis is.

Robin Pomeroy: Before you do that I'm going to play a clip from the film. This is - we're going to hear several voices of women talking about it and you'll hear what their experience is with endometriosis.

Below the Belt movie clip, various women: One out of every ten women. Okay? 170 million women suffer from it.

Well, those of you who don't know endometriosis is I'm going to read the definition straight from the internet: endometriosis is the abnormal growth of cells similar to those that form inside of the uterus, but in a location outside of the uterus.

It's literally internal bleeding and it causes so much pain, at least for.

Some women have stage four endometriosis and have no pain and they don't find out that they have it until they can't get pregnant.

It took me almost ten doctors to find someone that actually believed my pain.

Dozens of doctors. I've seen so many.

I probably saw more than 35 physicians.

Robin Pomeroy: So, Shannon, Endometriosis, how did you come to this condition? Why did you decide to focus on this for a movie?

Shannon Cohn: It's a personal choice and I think a lot of people maybe identify with that when a lot of our life's passions are driven by personal experience and things that resonate with us.

I first had symptoms of endometriosis when I was 16, yet didn't hear the word until I was 29 years old. So this yawning 13-year gap of not being believed actually by health care providers, being told my symptoms were in my head or part of being a woman, or I was exaggerating. All of the things that now we - the term now that, you know, the hot term is gaslighting. But that's what happens.

Robin Pomeroy: You had these symptoms when you were a teenager. And one of the women in the movie does as well. I wonder if you see some similarity there, the fact that you went to a doctor, age 16 with terrible pains in your abdomen and he said, 'Well, that's just that's women. That's that's what happens for women'. I mean, is that typical, do you think is a typical response?

Shannon Cohn: Absolutely. I can guarantee you every woman listening to this podcast right now, if 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 health care provider's office.

We have screened this film every continent except for Antarctica, they're holding out on us so far. And I ask audience members, who has not been believed? Without fail everybody raises their hand and smiles because it's you know, it's a common understanding, even though it's not funny. But yeah, it's a universal situation.

Robin Pomeroy: This movie takes us into the experience of four different women, different ages, different ethnicities. They're all in North America. But let's let's maybe hear a clip from the film. This is one of the four women whose stories we follow. If it is the first person we see in the film, Shannon, tell us something about who Jenneh is, who we first meet speechless with pain. She's on a sofa at home. She can't. She can barely breathe with the pain. She ends up being rushed into the emergency room. Tell us something about her. I mean, it's quite remarkable. In the clip we'll hear probably why it's so remarkable.

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

Robin Pomeroy: Let's hear something from Jenneh.

Jenneh Rishe: I thought that maybe I'm dying or I have some kind of rare disease, but then I go online and find that millions of women are going through exactly what I'm going through.

The first time that I was told it could be endometriosis, I'd never even heard of it. And this was six years into me being a nurse, in really what I like to regard as really highly specialised and nationally acclaimed medical centres. And to me to just, for the first time to be hearing about a disease that's so common, not in school, not through work. This was the first time I had ever heard of it, and that's kind of crazy. It's crazy to me. It's really crazy to me.

Robin Pomeroy: The movie is about endometriosis and it's a very interesting subject. But your introduction to this, when we started speaking, you didn't say this is a movie about endometriosis. You said this is a movie about women's health care and the fact that this as an example, this is a condition, very, very common condition, can be very serious. It also can cause infertility. Very often it's treated with a hysterectomy. So some very serious treatments. But the wider issue here is why have we never heard of it? Why isn't it getting diagnosed?

Is it sexism? Is it squeamishness? You mentioned the period taboo. You can imagine there was a taboo 100 years ago for that. Is there really still in America a taboo about periods?

Shannon Cohn: It's changing. I have a 15 year old daughter who talks about her period like she talks about what she's going to have for lunch. It's changing, but the taboo is still there.

I say, you know, yes, the film is about all of those things. It is about endometriosis, which I typically say, which I think is true, is arguably the most common devastating disease that most people have never heard of. It affects at least one in nine people, one in nine women. It is the cause of up to 50% of infertility cases in women. And by the way, many of those are needless because if women were diagnosed earlier, they would never become infertile.

It puts a burden on the US economy at the tune of $115 billion annually in lost wages, lost productivity and associated medical costs. One in six women with endometriosis lose at least one job due to symptoms.

So yes, it's a film about endometriosis, and rightly so. There needs to be a film about a condition that is so widespread, so little known. Why is it little known? Yes. Taboo, of course. That's where it all starts. People, girls don't talk about their symptoms when they're 13, 14.

You know, 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, you know, 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 there's a lot of work to do.

I know with the World Economic Forum and the Women's Health Initiative, a lot of the focus is on breaking these taboos so girls can go to school, so girls can have jobs, they can have fulfilling lives. But a lot of that starts with making sure they're in school when they're on their period, and they're not relegated to staying home. All of it starts there.

Robin Pomeroy: So you've shown the movie around the world. I just be interested because it is North American focused. This is the rich world, the developed world, although it certainly has interesting things to say perhaps about how health care is financed in the USA. But what's the impression you've had from going around the world with this film in terms of how endometriosis is diagnosed. Better or worse? And how those taboos are stronger or weaker. Do you get any sense that. Or is it the same around the world?

Shannon Cohn: It's basically the same, which is deplorable.

I mean, it doesn't matter. In the UK, which has the NHS. Great. You know, the NHS is really amazing for a lot of conditions and not so much for endometriosis. There was an all-party parliamentary working group in the UK released into 2021 and they found that 59% of people see their GP multiple times before they even are referred to a specialist for endometriosis.

It's the same situation in France, it's the same situation they're grappling with public versus private, but women still are, you know, going 8 to 10 years. That 8 to 10 year diagnostic delay is the same everywhere.

I will say that with women of colour or underserved communities, it's longer. Typically there's a lot of research showing that women of colour are typically diagnosed with sexually transmitted diseases rather than gynaecological diseases. Reproductive issues first when they present with endometriosis symptoms.

Robin Pomeroy: Let's talk about the politics. This is a film that talks about the health problem, the health care problem. But then it goes all the way to Capitol Hill. What is that political story going on there?

Shannon Cohn: So I will say that we screened this film on Capitol Hill March 1st of this year, 2023, for members of Congress. And this screening was hosted, co-hosted, by Senator Elizabeth Warren and Senator Mitt Romney. And at the screening, of course, Senator Romney joked like, I think that this may be the only bipartisan effort going on in Capitol Hill this week and certainly about women's health care. This is the only thing going on with both sides of the aisle.

And, you know, it's framed as a human issue. You know, it's not a political issue. It's something that both sides of the aisle can get behind because it has such enormous impact on all girls and women in every jurisdiction.

A lot of actions are happening in the US Congress right now, working with Senator Warren, Senator Romney, and there's a 31-member bipartisan House Endometriosis Caucus from the House of Representatives. We're working with them to generate a huge amount of research funding for endometriosis and women's health.

Robin Pomeroy:

Robin Pomeroy: And in the film, we see a Republican senator, Orrin Hatch, but it's because his granddaughter is diagnosed with this thing that he's never heard of. And he and Elizabeth Warren, who is a Democrat, get together and push for the funding, for the federal funding, for this thing that has just been underserved so far.

Talking of politics then, you have an array of executive producers on the film. Let's hear from one of them. This is Hillary Clinton.

Hillary Clinton: I am deeply honoured to be an executive producer of Below the Belt. This groundbreaking film aims to shine a light, a bright light, on endometriosis.

It's a disease that has been overlooked, ignored and dismissed for far too long, and the statistics are overwhelming. More than 200 million women around the world suffer from endometriosis, yet it often takes up to eight doctors and ten years to get even a proper diagnosis.

That is outrageous. And therefore it's time we all do something about it.

Robin Pomeroy: Hillary Clinton, who's an executive producer on the movie Below the Belt. How did you get her and the other executive producers involved?

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

And 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.

And that's what it's about. You know, all parties coming together - and entertainment. We have Rosario Dawson, who's an actress as an exact producer. Mae Whitman, also an actress, and Corinne Foxx, and everybody kind of putting their weight behind it, using their platforms to say, okay, enough is enough. Let's shine a light on this issue.

Robin Pomeroy: And have you had any blowback from this. It seems it seems so obvious that this is an important issue that needs addressing. But have you had any backlash? Has someone said, you know, everything's fine. You don't need to rattle our chains about this.

Shannon Cohn: You know, not so much, but I'm waiting for that to happen. And I can't wait because I can't wait to respond to someone to say that.

I think, you know, usually when presented with the issues and the stats that I shared earlier, people are like, Oh, I had no idea.

You know, I with Dr. Louise Perkins King at Harvard Medical School in January of this year, to first year medical students. It was a class in bioethics. And I didn't know, you know, as med students, these bright med students at Harvard, how they would react to it. And we showed them the film and then talked about these larger issues that I mentioned, 100% across the board, completely outraged, had no idea this was going on. And I think I can safely say that if - and I told them this - if nothing else, no matter what you specialise in, no matter what grand thing you end up doing with your life, if someone you come across, someone that has these symptoms, believe them and refer them to a specialist.

And that's the beauty of this. You know, who knows what they'll do? Maybe they'll go out and, you know, join the World Economic Forum in some way and like change the history of endometriosis in women's health care one day as a result of the screening, who knows?

But typically when people hear about the issue, they watch the film, they're appropriately outraged and engaged and ready to do something about it.

Robin Pomeroy: So on a human level, as a woman who's experienced this herself and as a journalistic documentary filmmaker, as there one story or one episode that you were filming or researching that really struck a chord with you among those four women or others? Have there been moments that just struck you emotionally, of the impact that this can have?

Shannon Cohn: 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 feel. And obviously they love. We all love, if we have children, we fight for our children like we would never maybe even fight for ourselves or our parents or our 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, and the father in the film who doesn't have, has limited financial means, and he's working within this broken system that requires money that he doesn't have. And he takes out a second mortgage on his house just to try to get his daughter well.

That - I get emotional still 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.

Robin Pomeroy: And I think he takes that mortgage out and he still knows he's kind of rolling the dice. He's got one roll of the dice left because that's the only money he's going to be able to raise. And it shows that actually the treatment can be very difficult for endometriosis. It can be very hard to cure because it's a growth outside the uterus, very close to all kinds of other internal organs that are in danger, with botched surgery or whatever.

It's great that you're spreading the word here, but it's it's going to be difficult, isn't it, to find effective, affordable cures for endometriosis?

Shannon Cohn: Yes, absolutely. It's not just about widespread awareness. I mean, there has to be an overhauling of medical education. No small feat. But, you know, 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 to say, okay, 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. We have some news coming out soon. 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 to specialists.

Endometriosis. It's a perfect storm, I will say. It is so complicated. It's highly individual one that one person may have this symptom, another person's going to have a different symptom. What treatment may work for one person may not work for another person, and that's it even if, you know, in a perfect world that everybody was able to access those treatments financially and geographically, all of the other things. But, you know, as with every complex situation, we take it a step at a time and we're getting there. What can you do?

Robin Pomeroy: Things sometimes go in reverse, though, don't they? We've seen that for women's rights, for example, in Afghanistan. It's a worse place to be as a woman than we were hoping it was going to become. Things do go backwards. Do you ever fear the march of progress on women's rights or just awareness about issues like this, can always go backwards? Or are you confident that things are getting better will continue to do so?

Shannon Cohn: Yes. Yes, that is true. I mean, for example, in Florida right now, someone is trying to pass a menstrual health restriction bill, basically that that children under the age, I think under high school should not learn about menstrual health, which is insane, but it's very clearly a political ploy. But we won't get into that right now.

But I will say that there are enough good people, educated people, people who will put political grand-staging aside, to say, no, this is important, this is what we need to do and move forward.

I was in a panel discussion last week actually in front of 800 people at the University of Mississippi with Dr. Thomas Dobbs of the infamous Dobbs decision that overturned Roe v Wade. And he said to this audience of 800 people, all children need menstrual health education.

So if we have people, all people, willing to speak out to put action behind their words and move progress forward, we'll get 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. You know, it's not a straight line, but ultimately, I'm quite positive.

Robin Pomeroy: It's a very emotional film, very engaging film. Where can people see it?

Shannon Cohn: They can learn more about it at belowthebelt.film We are doing screenings around the world. It will premiere in the United States on PBS nationally on June 21st of this year, and it will be broadcast in other countries around the world over the next year. So check local listings. And eventually it will be on streaming as well.

But you can learn everything there at belowthebelt.film and follow us at @EndoWhat on social media.

Robin Pomeroy: Shannon Cohn, director of Below the Belt. Thanks for joining us on Radio Davos.

Shannon Cohn: Thank you. It's an honour.

Robin Pomeroy: Shannon Cohn’s film is called Below the Belt.

Shannon mentioned there the work of the World Economic Forum’s Women's Health Initiative. It brings stakeholders together to work for a healthy, safe and equitable world for all women and girls. Find out more on our website, weforum.org.

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This episode of Radio Davos was written and presented by me, Robin Pomeroy. Studio production was by Gareth Nolan. We’ll back with that Growth Summit coverage. Stick with us on Radio Davos. Thanks for listening and goodbye.