We're joined by the Director and Producer of Below the Belt, Shannon Cohn to talk about the inspiration behind this life-saving documentary, the realities of living with endometriosis, and how you can spark change in our healthcare system.
Affecting change begins with awareness. That's what Shannon Cohn and her film Below the Belt is committed to doing.
Below the Belt is a must-see documentary exposing the devastating impact endometriosis has on peoples lives. The film highlights the deeply inadequate amount of funding, research, awareness, and treatment towards this disease.
Don’t know much about endo? Never even heard of it? You're not alone. But you most likely know someone who is living with endometriosis. This common chronic condition impacts 1 in 10 females and 200 million people on the planet. It takes an average of 10 years to be diagnosed after being bounced around from doctor to doctor, and despite its debilitating nature, it's largely overlooked.
We're honored to welcome Shannon Cohn — the Director and Producer of the documentaries Endo What? and her most recent piece, Below the Belt. For more than a decade Shannon has been a beacon of hope for people living with endometriosis. Living with endo herself and waiting a decade to receive a diagnosis, Shannon is fueled by frustration and passion to help those whose experiences were similar to hers.
She works across aisles to raise awareness of a debilitating disease that impacts the lives of millions around the world. Make time to see Below the Belt, premiering June 21st on PBS at 10pm EST.
Lastly, we end on a wild high note. Our animal kingdom is expanding!
Thanks for listening, learning, and being you. And join us back here every Tuesday for all things uterus, in service to you, uterinekind.
Shownotes:
Clips and trailers of Below the Belt: www.pbs.org/show/below-belt-last-health-taboo
Below the Belt website: www.belowthebelt.film
Endometriosis Toolkit: https://endowhat.com/educate-a-healthcare-provider
Carol: There's a canary in the boardroom, a tsunami of lawsuits and a lobby breaking a sweat to bury it all. But in the midst of that, there are people choosing passion projects over prophets. I'm Carol Johnson and this is Hello Uterus
All around us. People are stepping up to shine lights on and. Case of our special guest today, point cameras at chronic conditions that impact the female body. Shannon Cohn, the producer and director of two groundbreaking documentaries on endometriosis, endo What and Her latest Below the Belt, joins us to talk about her work to lift awareness of the disease, its impact on the lives of those who.
And the lack of research and, and honestly, the lack of interest from those with the power to make change happen. We're thrilled to have her on today's episode, but before we meet Shannon, Uterus in the news.
There's one thing that we can't stop thinking about at Uterine Kind, and so we have declared 2023 as the year of endocrine disrupting chemicals. We've covered the rising red flags around EDCs and their impact on the female system, but perhaps this is the canary in the coal mine. More apt. The canary in the boardroom investors all of a sudden are concerned for our health.
Well, not really. They're concerned for the health of the bottom line of the companies in which they have invested in the first quarter of 2022, the world's largest oil and gas producers made over $100 billion in profits in three months. Just one quarter of the year, a hundred billion not in revenue, in profits, and they will not let that cash go willingly.
Tom Perkins wrote an article published in The Guardian on January 6th, 2023, focused on pressure from investors on the petrochemical industry to eliminate forever chemicals. Many of which are known endocrine disruptors. The investors are bringing. Not the epa, the investors. This quote stands out from Eric Olson, a senior strategic director with a nonprofit Natural Resources Defense Council.
He says there has got to be concern in boardrooms and among knowledgeable and savvy shareholders that continuing to manufacture these chemicals that are creating the Superfund sites of tomorrow. Is really risky for them financially. If people getting sick and dying of exposure to these chemicals wasn't enough, the liability should be and it will.
The lawsuits have started against personal care products, companies like those who make toxic hair straightening kits for black women companies that make containers for food products like ketchup. And now we have a lawsuit aimed directly at the Environmental Protection Agency, which doesn't seem to be doing a lot of protecting of the environment.
The Center for Food Safety, along with environmental health and farm worker organizations has sued the E P A for failing to test and regulate dangerous endocrine disrupting pesticides as required by law. Ah, even we have regulations. They're not regulating anything. The lawsuit filed in the US District Court for the Northern District of California challenges EPAs years of inaction on the endocrine disruptor screening program that Congress mandated in the Food Quality Protection Act of.
19 96, 19 96. In the 26 years since the E P A has tested, hold on to something. As you hear, this has tested fewer than 50. Of more than 1300 registered pesticides for endocrine disruption effects. And of those 50 tests, only 34 were actually completed. I smell. Lobbyists. So there's gonna be thousands of lawsuits filed against companies that make products that contain endocrine disrupting chemicals, including hair straightening products.
In fact, the US judicial panel on multi-district litigation has scheduled oral arguments for January 26th to decide. All hair relaxer lawsuits being filed through the federal court by women diagnosed with uterine cancer, ovarian cancer, uterine fibroids, and other injuries should be consolidated before the US district judge for coordinated pretrial proceedings.
I don't care if you consolidate 'em up, do whatever you have to do. Don't settle them and don't bury them. We know that these chemicals are not just in hair straightening products. They are everywhere. Companies justify using chemicals that have not been fully studied and are exposed to the female body, which has been like barely studied, and they rest their conscience on the false assumption.
The amounts of these endocrine disrupting chemicals are too small to cause harm. Or my personal favorite. There are no data that directly link insert toxic chemical here to insert chronic condition here. No data. You say, Hmm. You can thank industry lobbyists for the lack of research and the E P A itself and an F D A, that shivers at taking action against.
Have you heard of Lummi? The deodorant that you can use anywhere as if you couldn't use other deodorants anywhere. Anyway, Lummi was created by an O B G Y N, Shannon Klingman. So it's surprising that she wasn't committed to creating a product that doesn't contain EDCs. A quick look at their ingredients list and we spot terms like skin safe fragrance, but um, is it lung?
Endocrine systems, safe, regulated, even studied perhaps. There are ingredients that may cause irritation of the intestinal tract. Hmm, that seems suss. Other ingredients are indicated to have moderate toxicity specific to non reproductive organ systems. Gee, that seems awfully specific and indicative that they didn't study the ingredients.
Impact on the reproductive system. This crap has to end. Dr. Klingman, who is enamored with the term disruptor, just not when it comes to chemicals, said the following. I'm super excited to be the brand that is leading the charge on disrupting the way we talk about body odor. Well, Dr. Klingman, could you also be as passionate about eliminating chemicals in your products?
Body odor is not anywhere near as offensive as unregulated fragrances that are endocrine disruptors. More than 80 other countries have taken action to protect their citizens from chemicals linked to cancer and reproductive harm. The US has lagged behind every Congress since 2015. Diane Feinstein and Susan Collins Senators have introduced the personal Care Product Safety Act.
If enacted, it would give the f d A the ability to protect the public from harm from cosmetics they use daily, except the F D A doesn't like to upset their buds over in the petrochemical vertical. We live in an inescapable chemical storm. We lack the foundational knowledge of the female system to fully understand how these chemicals impact it.
Over at the Endocrine Society, they've released this statement available@endocrine.org, which is a great resource on all things EDCs. I quote in 2015, the endocrine. Analyzed 1800 studies on endocrine disrupting chemicals and published an evidence-based scientific statement. We found clear evidence showing how EDCs disrupt our hormones and harm our health.
They are linked to male and female reproductive disorders, obesity. Diabetes, neurological problems, immune and thyroid disorders, osteoporosis, Parkinson's disease, and hormone related cancers. So, so they're gonna be banned like on Tuesday, right? When the investors are ringing their hands and protecting their fortunes, that ought to be a sign.
That researchers are linking chemicals in our food, personal care products, other consumer products like all that, vegan leather, a k a plastic cause disease. Our bodies are clearly suffering. Chronic conditions are spiraling out of control, which is stressing our healthcare system. So it's time for some parenting here.
Regulations are good for. And we're learning that companies left unregulated create products that are cheap to manufacture and quick to poison. Our bodies are not designed to metabolize these toxic chemicals, neither is the planet. So we will continue to follow the science and the news and bring it to you each week so you can take excellent care of yourself and your loved ones.
We have to pay attention to. My theory, my opinion, not a scientist. My theory is at the root of all of these conditions that we regularly discuss here on Hello Uterus and that we focus on at Uterine Kind, are going to be linked by chemicals, by the pollutants that surround us and impact our systems and the, the industries that make them would benefit from being more compass.
To their customers and not selling products that are actually harming their customers. You know, back to Lumi, developed by an O B G yn and then trading on that in your marketing materials, yet not really getting serious about creating a truly clean product. I certainly do appreciate that there are no phalates in Loomie, but there are other chemicals in loo.
So let's get serious about this. Let's join together, keep our eye on what's happening, support those who are taking on industry through these lawsuits, and do the best we can to clean up our environment so that we have the right to a healthy quality of life. And now, after a quick break, I will introduce you to the brilliant and talented filmmaker Shannon Cohen.
There's
Angel: no easier way to make sure that your beauty and personal care products are what they should be safe and good for you than finding a source you trust that does all the homework for you. That source is beauty heroes, a healthy beauty retailer that carries over 120 brands from around the world featuring truly all good for you skin body.
Sun and haircare. Take a look at their selection and save 15% on your first purchase from their beauty store or on your first subscription with the code uterine kind checkout. Visit beauty heroes.com. That's beauty a dash h e r o e s.com. Thank you. Now let's get back to the,
Carol: We are honored to have Shannon Cohen join us today.
Shannon is a documentary film producer and director, a lawyer, a tireless and effective advocate for those living with Endo, and she herself lives with Endo. She joins us today to talk about the disease and her latest film Below the Belt, her Companion to Endo. What an educational film about endometriosis.
I hope you never stop making films. Thank you for being here, and I wanna just say thank you for being so many people have learned that they're not alone because of your films. They've felt hope when no one else gave them hope. They felt like someone was paying attention, which gave them hope, and their loved ones have learned how to better support them.
So the, the support that your. Have created, goes beyond those living with the disease to the people who are also impacted by endo in, in the lives of their loved ones. And so you've chosen, you could have done a myriad of things, but you've chosen to focus on this and it's made a huge impact on people's lives.
So I just really wanna thank you , for, for making that choice. Cuz you could have a really cool bookshop on Cape Cod or something and be kicking back and you're not doing any of that .
Shannon: Thank you. Thank you for sharing that. But yeah, I mean, I think we all strive for doing something that is meaningful and that can help people.
That's what. We're trying to do. And when I became a filmmaker, it's, I wanted to tell meaningful stories that make an impact. And, um, I worked in New York for a number of years telling other people's stories that are also very important. But as a producer, and it wasn't until, you know, we were building the, this production company I was worth with the New York, we were really on the, for.
Of this social impact documentary distribution model. And I started thinking because I was having endometriosis symptoms, , and also trying to get pregnant and have children, and really going through all of this in a personal, a deeply personal way while I was working at this company. And then it just kind of hit me if there were ever a condition or disease that needed social impact.
Films, films that actually. Changed people's lives in meaningful waves and educated people that were not getting that education. It's endometriosis. Yeah, so that's when it
Carol: all started. A quick definition for those who are new here at Hello Uterus. Endometriosis is a beast. It's a full body inflammatory disease that is largely not understood.
It occurs when tissue that is similar in. The way it behaves to the endometrium, which lines? The uterine cavity is located outside of the uterine cavity. And again, this is not the endometrium, it's tissue that acts like it. The thing to to know about this is it's aggressiveness. This isn't something that stays put and occasionally flares up.
Like this is a really. Kind of fascinating. If you look at it from a purely scientific standpoint, fascinating occurrence in the body. I mean, it's, it is just aggressive and it's very, very painful in many, many cases. And the thing also to know about it is how common it is. Um, at least one in 10 people born with a uterus, um, or born female.
Have endometriosis, which is a shocking, shocking statistic. Would you share with us how you came to your Endo diagnosis? Mm,
Shannon: ver after a very long, expensive, arduous struggle. , I mean, like so many people who have endometriosis, right? I went many years, uh, without having an answer. I first had symptoms when I was 16, and a lot of people don't realize my first symptoms.
Um, or GI symptoms. A lot of people don't realize that that's actually an incredibly common first symptom of endometriosis. They think, oh, well, it's painful periods. I, you know, I don't know. I, I just have really bad stomach gigs, or I have bloating, or, you know, that seems cyclical. And that's really what I had.
I didn't think it was. Related, you know, all of my GI symptoms that I had. So basically, of course, that sent me on, of course, all of these GI specialists. Then I would have migraines for a while, then I would go to a neurologist, you know, um, then I'd go back to a gynecologist and I'd go to my pcp, my primary care provider, and really, You know, kind of went on this circle, ambitious cycle of specialist over a number of years.
Cuz I actually moved quite a bit from university to law school to starting a law career, uh, before I became a filmmaker. And I lived in all different places, so I had to start over with all of these doctors, these healthcare providers, every time. It wasn't until I was 29, so 13 years later, I heard the word endometriosis for the first time.
And of course as soon as I heard it, I was like, What did, what did she just say to me? and I tried to go Google it and of course I was misspelling it cuz I was just, I didn't, I'd never heard of it or seen it or, you know, and of course I, I Googled it and when I figured it out it seemed really scary and, you know, a lot of unknowns surrounding the disease.
So that's kind of frightening for most people and that this, when I heard the word, uh, I wasn't actually officially diagnosed until the surgeon went into surgery, took a sample, sent it to pathology, and that's when it was confirmed by a pathologist. And that is currently the only way to get a definitive diagnosis of
Carol: endometriosis.
Yeah, another complicating factor to what's already a complicated, um, condition. Prior to getting your diagnosis, do you recall being stressed by just not knowing what was happening? Like obviously stressed from the symptoms and, and being impacted that way, but was there this. Maybe subconscious just feeling kind of untethered because there's this looming unanswered question in your
Shannon: life.
Yeah, of course. I mean, I think we, we all like certainty, we all like a control to a certain amount of, you know, to a certain degree. And when you know that something is wrong with you, but you don't know what it is. And not only that, I was told multiple times by different healthcare providers. You know, there was nothing wrong.
I was exaggerating. It couldn't be that bad. And then when I had painful period. That was part of being a woman. You know, I needed to suck it up. Like maybe I just had a low pain tolerance. All of these things, and I remember, especially as a teenager, when I first started hearing these things, you already feel disempowered as a teenager.
You think adults know more than you. That's just the way you know, we are programmed as we, you know, grow up. And then you have these authority figures telling you. You're imagining things or you're making things worse than they are. I was told that meanwhile, I leave the doctor's office and go lie down on the bathroom floor because I'm in so much pain.
I'm having hot flashes and cold sweats alternating because I'm in so much pain and. It's really disconcerting for someone to be told those things when you know something is going on with your body. Um, and then of course after a while you just, you know, like people are like, oh, you're seeing another doctor.
Oh, you're seeing someone else. I'm just like, I don't want to be, but something is wrong with me. And they Right. No one could figure it out. Cause. You know, that's the thing with, at least the healthcare system, mainly in the US is there are a lot of different specialties, but they don't really talk to one another unless you're lucky enough to have, you know, a healthcare provider that serves that role for you.
But those are few and far between. You are usually the person that's having, you know, has to connect all of the dots here. So yes, it's, it's incredibly disconcerting. It's makes one very. And you feel disempowered. I mean, I was a lawyer, I was a smart person. Like I was highly educated. I felt like I should be able to figure it out and I couldn't figure it out, not without
Carol: help.
So that that is just a stew of like terribleness when you think about like being in limbo, but then also being gas lit. Your experience and then the way that you described your friends being frustrated as well, you know, like frustrated that, that you've got this, you know, bag of rocks that you have to lug around with you.
And we collectively have been talking about this for a long time. And it just surprises me how you can still have a conversation with a physician or with a clinician or somebody who you would assume would know what you're talking about, and they, they still don't, they don't either validate what you are describing as being gaslit.
You know, people are still walking into ERs and being told that. Pain pill seekers that's happening now as opposed to like, I just assumed with my rose-colored glasses on that you'd only need to hear this once. You know, like everybody at the hospitals would go down to the er, they'd gather everybody together and they'd say, the next time somebody walks in here complaining of pain and they are female, you are gonna take them seriously.
And then that would be the end of it. Why is that not the end?
Shannon: You know, there was a study not long ago, and I actually cited it in this TED Talk I did where, cause when I read the stat, I was floored. It was that I forgot exactly how many minutes. But women generally wait at least 15 to 16 more men minutes in a ER to be treated for severe abdominal pain than men.
And they're most often given a sed. Instead of painkillers for the pain than men. So, you know, so we have that added Well, cultural prejudice or cultural, you know, misogyny. Yeah. , uh, toward women. And not to even mention if you're a woman of color, Jenna is in our film. She's one of the film subjects. She's highly educated.
Um, in Los Angeles, she is an African American woman and she says in the film that she would take her boyfriend at the time who was worked in computer programming, I believe her, the ER with her when she needed to go, because she realized over time that the doctors would take her symptoms more seriously is if he either spoke for her or spoke up after she shared her symptom.
and that in a nutshell is what we're all dealing with. That is also, you know, exacerbated if you're a person of color or a marginalized person, going back to, you know, when doctors don't take you seriously or you know, that happened actually last week to me. I went in to see a specialist and he was like, well, I just don't know.
And I'm like, something's going on. , you know, something's going on and we just haven't found the answer yet. So let's, it's a GI issue, so, so let's do some more tests. But in that moment, even now, I was like, don't get dramatic, don't get upset. Stay like, I'm very hyper aware as a woman. To not be, you know, considered an overwrought of early emotional female patient, um, to stay calm, you know, uh, I was like channeling.
Okay, I'm booed on the mountaintop. I'm very calm, , stay calm, but be very firm and saying, I know my body, something's going on. You haven't found the answer yet. It doesn't mean we're not gonna find it. Let's keep moving on.
Carol: Isn't that amazing that we have to, and out of all the things that we do, we also have to be like the adult on duty in the doctor's.
Office in a consultation like being their cheerleader, like, it's okay that you don't know, don't, don't freak out over that like, right, I'm
Shannon: not blaming you. Right? There's no blame going on. We're working together to find an answer. Yeah. Um, but honestly I only did that because of decades of going, you know what I mean?
Of learning like, oh, so not only personally, but from literally talking to hundreds of people, you know, throughout making these films over the past decade and hearing their stories repeatedly, you know, stories of from, from people around the world and. Seeing so many similarities and commonalities in their stories, no matter, you know, their age, their race, their nationality, their sexual orientation, their socioeconomic status.
Yes. And you know, their experiences, you know, are varying degrees on this, you know, the scale, but there's so many commonalities in all of our experiences.
Carol: Really when you, when you look at, we'll talk about research and science and the politics in a second. Um, but I'm seeing how it all kind of is, like if it's a gathering of balloons, you know, where all the strings come together, is misogyny because nothing else seems.
As immovable, , and I constantly, in my brain, I have like these little uh, dots that ping back and forth, you know, like how the n I H views funding research for conditions that primarily impact the female body and legislative voting on not bearing your shoulders when you're in a state congressional.
Office and if you're a woman and the repeal of Roe and, and it just goes on and on and on. And so when we look at what we need to see change in medical schools so that physicians are really thoroughly educated on Endo and how to connect the dots there and. And we see that we need changes in funding and all of that.
The single factor that ties them all together is that there's a female at the center of this. Mm-hmm. .
Shannon: That's true. I mean, historically, of course we all know that, you know, women's research has been historically underfunded. I mean, endometriosis has been historically underfunded. Dismissed, um, minimized in many ways.
And that's one reason like, you know, in the film and below the belt, we look at a lot of these large systemic issues told to the lens of endometriosis. Cuz I say, you know, endo's a perfect awful storm of so many things going on in our healthcare system, including misogyny. And it, this, this film just provides a lens.
You know, through which to look. I will say I have been in contact recently with medical students in a classroom. Last week I helped co-teach this class in bioethics at Harvard Medical School and we used clips of the film and looked at these large issues within the classroom. And you know, it was my first class that I'd had like this with medical students.
They were all first year medical students and. Overwhelmingly, they were outraged. They were enthusiastic about looking for, you know, changes, trying to like use their, their position, their intelligence to try to look for answers. At the very least, then now they're aware that this is going on. None of them knew.
Carol: Wow. So in that environment, nobody raised their hand. They didn't,
Shannon: they didn't know. They just didn't know. So I think a lot of it is, you know, medical students are not being told this is going on, this is happening. At least in that class, when they learned it was happening, when we showed them the film, they were touched, you know, they were very emotional over it.
I mean, and. Then we're outraged. I would, it just gave me so much hope, I have to say, as their chapter in the classroom with them, because it's just like they just needed to know. I mean, yes, of course not everybody's gonna go out and then make it their lifelong, you know, purpose to change endometriosis.
But I told them, I was like, if you're gonna see patients, you will come into contact with. People who have endometriosis, and the question is, are you gonna believe them when they come with symptoms? Are you gonna be able to recognize the symptoms and you gonna, are you gonna know how to refer them to appropriate care?
Um, I was like, even if they do that, you know, for one person, that's a win. Absolutely. That's the whole point. But if one or two come away from it and then actually do something on a systemic level, that would be, that would be.
Carol: I think with people in, in that generation, I have two of them that still identify as my children, um, that are in and around that age.
And no matter how much I try to impart my great wisdom to them, they come with their own sensibilities and their own wisdom, which was not the case when I was growing up. I kind of fell in line and did what I was told, and it reminds me of. Something that we've talked about on the show here that in medical school, I don't know if this is still going on today, I ha I haven't asked anyone, but for the longest time and likely still today, one of the sort of mantras that they teach is that when someone is presenting with symptoms, they think zebra.
You think horses. So you come in and you're like, oh my gosh, I'm having these, you know, really bad bloating and this and this and this. It's a zebra. And that the physician has been trained to think, no zebra. No zebra. It's a horse. And and I'm like, well, you know what? There are a lot of zebras out there that you all haven't been paying attention to.
P C O. Endometriosis. Adenomyosis, fibroids, ovulatory disorders, endometrial disorders, those are, are now not zebras because one in three women have abnormal uterine bleeding. That's a horse buddy , you know? So I think like that. I'm so thrilled because that means that after they've had that experience with you, when someone tries to go and sort of diffuse or tamp down, That understanding and try to sort of make their, the way they practice medicine a little 2D rather than 3d, you know, um, that it's not gonna work.
Because Cuz the seed's been planted.
Shannon: Yeah. And that, you know, I think that's the power of storytelling too. Yeah. They've watched the film so they understand the lived experiences of these people. And no matter what they're told, they, they can't forget the lived experiences. They can't argue against the lived experiences.
Those are all true. Those happen to those four people in the film, which represen. A much larger population, and that's what the class went into is all of the, what does that mean for the larger population? That's the power of storytelling and the film, you know, as a teaching tool, because it just takes on, like you say, an entirely different dimension.
It brings these facts beyond the 2D, into something that isn't even beyond the academic. It's into the, the hearts and the minds of the.
Carol: Yeah. They, they won't forget it. That's fantastic. I'm so glad that you did that. I, I wanna also, um, talk about, uh, the healthcare provider education effort that you have going on, which I think is fantastic.
But right. Before we get to that, can we talk a little bit about the politics of Endo? I'm, I'm stymied by this fact, and I know that you have yourself. bipartisan support for funding of endometriosis, which is, uh, incredible. So I can't wait until you run for Speaker of the House or president or whatever it is you're gonna do next.
Shannon: no
Carol: politics for me. Yeah, right. I know, I hear you. Um, but it's just kind of remarkable because I've been taught in business that. A dollar in, like if you put a dollar into something and you get a dollar 10 out, like do that all day long, that's a win, right? And that if, if something is bleeding money out of an organization or out of the economy, you do your best to stop that from happening, right?
So Endo bleeds out around 120 billion a year from the economy, yet the players that you would expect. to be climbing all over themselves to try to, to stem that flow of cash aren't doing it. So is it because they maybe question the science or they don't like, they, they need to see more science and then, then my follow on question is, well then fund the science.
I mean, I, you can't, like if, if someone says, well, you know, we don't know what kind of. Medicine to create. Um, and you know, that's beyond birth control or non-hormonal medicine to create. And it's like, well if you fund the science, you might actually be able to figure that out, . And then we would stop the hundred and 20 billion.
Like, it just seems odd that that's just allowed to happen. Whereas in other industries that would never.
Shannon: Um, well first of all, thank you for the kind words, but it definitely was not just me who secured research funding. It takes a village, as they say. Um, and as you see him below the belt, you know, it's absolutely instrumental that we worked with Mary Alice Hatch and Emily Hatch, a mother and daughter team who are featured in the film.
Who, um, Emily. Is the granddaughter of Senator Orrin Hatch, re Republican senator from Utah. Also, beyond the scenes, a lot of advocates and healthcare providers who gave, you know, their expertise. People like Heather Guidon, who is a board certified patient advocate and knows more about endometriosis than anyone else I know, and, um, a lot of different, um, specialists who also really just gave their time and their energy and their knowledge to saying, no, this is how we can put this together and present.
To politicians so that they get it, which leads to the second is they don't know like medical students. Why is it, why has it not been focused on as it should have? Because it just historically has not been a priority and it's because people just don't really know this is happening and. When they don't know what, you know, there's a lot of other things, a lot of other conditions, diseases, issues, you know, like there are a lot of things going on in the world that are clamoring for their attention, which is fine.
All, you know, they can all be important and valid, but unless you get on in their attention in a big way, you can't. And a lot of times that is a personal connection. I mean, with Senator Hatch, because he had seen his granddaughter suffer. I mean, suffer in bed and just debilitating pain, you know, as a teenager.
It is just a helpless feeling, you know, as a parent or grandparent to see someone you love suffer so much. So obviously it made an impression on him and when we came to him and started filming and saying, you know, what, if we, you know, go after DOD funding, what can we do here? He recognized as, did we, like we, this needs to be a bipartisan initiative.
And he recommended Senator Elizabeth Warren as a collaborator. She signed on right away and said, I'll, I'll be a part of this. And then when they learned about the situation, when Mary Allison and Emily shared, and this is all in the film about endometriosis and the personal experience, and Senator Hatch himself, you know, shared in a personal way what he had seen, you know, the disease do to his own family.
And then it was kind of like, oh. Okay, well then this is really unfair. Let's do something about this. And that led to, you know, the DOD funding and then of course other advocates who are really, like Abby Fiau, who was a congresswoman from Iowa. She started the House Endometriosis Caucus, which is a 31 member bipartisan, um, group within the, the House of Representatives to also tackle this.
And it was due to her work and the work of the senator. Uh, when Senator Hatch retired, Senator MIT Romney kinda stepped in his place on the Republican side so that this, you know, these initiatives became, you know, stayed bipartisan. But it was a lot of, you know, due to their work that the NIH funding was, you know, doubled.
The momentum is going up and we're gonna keep working to, um, keep the momentum going and keep that amount building because only when we have that. Is when we're gonna find answers, not just to what causes endometriosis and other related, you know, comorbidities, but effective treatments. Cause we just don't have them right now.
Carol: When you said earlier, it's the power of storytelling. You know how sometimes you hear something like that, like often, and so you, it becomes this phrase that you understand, but when you really sit with it, as you just walked us through all that, all of those accomplishments were achieved through the power of storytelling, which really underscores the power of storytelling that then trickles down to the patie.
Who have been trying to tell their story in doctor room, after doctor room, after doctor room, and they've not been heard that they understand the power of their individual stories, and if everyone is sharing them, then there's no way that you could stop the momentum from accelerating because of the debilitating nature of this condition.
So, Just man, sometimes being a human is, you know, it's just a wild experience because you, you're dealing with these physical things with this body that we don't fully understand, and then you're dealing with the emotional aspects of it, and then you're also trying to change society, right. . Big, big undertakings.
One of the things that I love about the way that you have gone about this is you're very strategic. So I don't know if that, if that's the attorney in you or if that is just how you came into the world, but you know, it's one thing to be a creative and to put a film out there, but you're, you've got this like multi tend situation going on mm-hmm.
to affect change and one of the cool. Aspects is this school nurse initiative, which I think is just probably like a top five most brilliant ideas ever because girls in high school are really suffering. And to have that, to be able to walk into a school nurse office and be met with understanding. Is like, that's a dramatic achievement.
Um, so can you please tell us how, how you crafted it? And I know you're gonna say that there's a team of people, but you're . But, um, how did you make the connection there that that was the way to go? I mean,
Shannon: also from personal experience, but also talking to hundreds of people with, you know, with endometriosis and hearing, you know, I know in the US you know, we have school nurses, a lot of other countries that.
You know, a thing, but, um, with American people with endometriosis, a lot of times they would say, you know, when is my school nurse? And they didn't know. And that was their first encounter with a healthcare provider with their symptoms. So we just thought, okay, let's start at the very beginning. You know, let's do the very, very frontline provider.
And that if we can get that school nurse just having a radar up and that when the girl, the person with endometriosis symptoms comes in and you know, starts, maybe they say GI symptoms like I did, and then making sure the school nurse kind of has a red flag and saying, okay, if there's cyclical GI symptoms, maybe yes, it could be a, you know, a food allergy or sensitivity or something else.
Maybe something they, but if it's cyclical, And this continues to happen. It could be endometriosis, you know, especially if the girl maybe is on her period and just making sure that they are aware of the true symptomatic profile of endometriosis. Yes. You know, painful period, so badly that you know, the girl or the person with endometriosis is stopped in their tracks and they, you know, can't participate, participate regularly in school activities, extracurricular activities, that should be a red flag.
So making sure the school nurse is aware of that. They, um, we have school nurse toolkits basically, that includes copies of the film, um, educational booklets, uh, discussion guide and a sample curriculum for a class, uh, as well as posters in English and Spanish that the school nurse can put up in their infirmary or the locker room or bathrooms.
All of those things that are really more geared toward the, the student, because I'm also a practical person, uh, and really wanna enur, encourage the nurses to actually digest the materials. They can get three and a half C units, CEU units, uh, for reviewing the materials because they need that continuing education credit.
So we're just kind of giving it to them and putting a bow on it and saying, Hey, you need continuing education. Why not do. And that's been a very effective thing in a, in a practical, in a practical
Carol: way. fantastic. It's such a meaningful direction to take like the, well, let me ask you it. Out of all the things that you're doing, is it more satisfying because there's no middle man there.
You're not really having to like dance to somebody else's music. You can just go in and say, Hey, they're coming into your office today, and I want you to be prepared.
Shannon: Oh, that's what we're doing with everything we're doing. All of the things that we're, I mean, yes, I guess we're going through some certain channels.
And being diplomatic and trying to move things that way. But man, those channels are slow and you know, a lot of times the decision makers change every year, every two years, and you're starting all over because the process is so slow. So we've learned to make an end run around all of that because, uh, you could be exhausted.
You know, it's just like, no way. Forget it. Let's just forge our own path and go straight to the source, which is what we're doing with a, with a lot of the. And it's been highly effective. .
Carol: Yeah. That , it's like you can, uh, we'll have to do a study on that. I mean, I've been ever since the first, um, most people won't remember this title.
A and r rep. Right. The album and rock. Right. Ever since the, they started to tumble because when, when I was younger, that was like the athlete of our time. Right. The a and r rep was like the cool kid on the block and then they all got fired and, and it's like, you know, Saw the music industry transform by getting rid of the, the middlemen there.
And I've just been kind of watching that over the last few decades, happened over and over again. And this is such a great example. It's like, okay, enough out of our way, we're gonna go and, and get this done. So I do wanna point out that you can sponsor kits for nurses. So endo what? Dot com, right? And, uh, educate a healthcare provider is the slash So if you just google endo what.com.
Healthcare provider, I'm sure you'll, you'll get right to that subpage and you can buy a kit to set. And wouldn't it be cool if I actually, I'm gonna do that for my kids' high school, we could all just focus on our local community. Just one kit. If everybody bought a kit. You like, not even everybody. If three people in a town bought a kit, you could hit all three schools in your town and then then everybody in town would know about endometriosis.
Exactly. Like it's so simple. Instead of having to go around and like have lunches with all of these distributors, which I'm sure is not as much fun as. Going to talk to nurses, so, excellent. Now let's talk about the film itself and how people can see it and how you're also kind of reinventing the way you're going about distributing this film.
And the film is of course, below the belt. So can you tell us how we can see it and what strategies you're taking? Sure.
Shannon: Yeah. And you know, I just, it just occurred to me when you were talking about the healthcare provider that I should back up just a little bit. We actually have two films on endometriosis and the first is Endo What?
And it was released about five years ago, and it's an educational film on endometriosis, basically. I wanted to start there because it gives an accurate base of knowledge about endometriosis straight from world's experts. And it's basically everything I wish I had known at 16, but didn't learn until, I mean, two.
Later. Really the goal with that film is to really cut that delayed diagnosis. It's a great place for a person to start and just understand the landscape they're dealing with, understand the disease a bit better, understand the treatment options without being sold, treatment options, you know, but really an unbiased source.
We don't take funds from pharmaceutical companies like we have never, and we'll never, for example. So it's really meant to be a balanced look. These are treatment options in general. You know, these are the pros and cons of each. Um, and go into that. That's what Endo what is okay. Uh, so it's a very specific film, and the next film below the belt is really meant for the mainstream.
It is meant to put endometriosis on everyone's map, and it follows like many traditional documentaries, it follows four people over a number of years. Tells a story based on their lived experiences. So in this case, tells the story of what it means to not being taken, you know, being taken seriously.
Racial bias and medicine, gender bias and medicine. What is informed consent and when you don't have it, what does that do? What are financial hurdles to care? Like, how do we get around them? Why are they there? All of these things the film goes into, through the lens of endometriosis. It doesn't have always, to give a disclaimer, it doesn't answer everything about endometriosis.
It was never meant to. Uh, and honestly, like I wouldn't wanna sit through a film that does do that. I mean, it would take, I was, I make a joke that it would take like a 10 part series, you know, on Netflix. And honestly, like, who wants to watch that ? I don't.
Carol: Right. I, you'd have to really, you'd have to do a lot of self care to make it through that over, you know, that wouldn't be something you'd.
Right. I mean, maybe. No, no, I dunno. I dunno. But
Shannon: I mean a very few people, but it's not really, you know, that's not what the goal of the film is. Um, so the goal is really meant to be a catalyzing tool for change. And that can mean different things to different organizations and different people. .
Carol: Yeah. And the stories that you've captured, they, as we've been, here's the theme, storytelling, they won't leave people's minds very easily.
I mean, if, if you don't know anything about endometriosis and, and maybe you're listening because you have, you know, quote unquote bad periods, and so you have this experience, but you haven't really sat down and talked to somebody who has endometriosis, it's a gut punch. It's like getting a cancer diagnosis, but it is not terminal.
I mean, it can cause someone to die, right? Endometriosis could cause someone to die, but it's not a terminal disease. It's not, you know, there is no race against the clock. To save someone from it. And because there are so many unanswered questions around it, there's also no one running into the burning building because they don't, they don't know what to do in many cases.
So actually I would watch 10 weeks of that, you know, , I, I'm just thinking about it like, just think cuz the, you look at someone else's strength to survive through. And it, and if that doesn't, you know, kick you in the ass to do more in your own life, like, I don't know, what would, you know? I mean, it's just, I absolutely have more gratitude for the ease of my life than I ever have before, since.
Working in this space of chronic conditions that impact the female body. I have it easy.
Shannon: Yeah. You know, I think a lot of people who like able-bodied people, they don't realize how fortunate and myself included, when I go through many months of feeling great, I forget to have gratitude to cuz I'm just living, you know?
And we're all doing that and we can give ourselves that, you know, but it's not until I feel badly again that I'm like, I had, you know, it was so great when I felt okay, you know? Yeah. And I just try to live in that place of being grateful when I wake up and feel good that day. So, yeah. Thank you for that.
Carol: Yep. Absolutely. So how can we see the film ?
Shannon: Well, endo what is available on Endo what.com and below the belt you, we have a certain, several virtual screenings and in-person screenings coming up, leading up to the PBS broadcast in the. It will be available internationally on broadcast as well. We're gonna be working with, um, someone in several countries to get the film as widely as possible, and that'll be happening.
We'll be, you know, different announcements over the next few months and, uh, it will be available for, for streaming soon. So just stay tuned. Follow us on social media. We're on Twitter and Instagram and Facebook and TikTok at end.
Carol: I, the list could go on and on and I'm like, and yeah, I know, right? Do that.
Sign up, watch with your friends. I think you also indicated that we could host screenings, right?
Shannon: Yes. I, that's what I would love for people. The more people to host screenings the better, just because it really, I've found with a lot of films, but especially these type of films, if you watch it in the company of others, it really.
Especially a film like this, it's gonna encourage communication, community, and understanding, uh, about the disease, about the experiences that a lot of times the hosts are going through and guests too. And, um, it can be a transformative experience.
Carol: Yeah. Even if you think endo's not part of your world, but trust me, if you go outside of your house, endo's part of your world, just, you know, being with people who have had symptoms of any condition, dismissed, you know, just that healing that can come from seeing experiences that might be similar to your own.
And, um, you know, recognizing that we have a healthcare system that needs some work, but as you said at the start of our conversation, , like, we have to do this work. You can't rely upon your doctor to solve everything. You can't, you know, we just have to be, um, increasingly more self-sufficient. But the cool thing is that with films like Below the Belt, we get to be self-sufficient in a crew of people, and that's very cool and super powerful and it's definitely, um, made an.
On how I live my life and how I look at other people in general, just as human beings. Like it changes the way you view people because you don't know what they're dealing with, and you just kind of, I don't know, it's like getting inspired to make a change, but also learning how to sort of relax around people and let them be because we don't understand what they're dealing.
Behind the scenes. So that is just a tremendous success. You have been able to connect the dots for a lot of people, and I, I hope that you are ludicrously proud. You strike me as the kind of person who's gonna be like, no, I have more work to do. I have more work to do. But please,
Shannon: there's always work to do. But yes, I, I think we all have to stop and be still for a bit
Carol: Absolutely. So thank you Shannon Cohen, for dedicating your life, not just your work life or your creative life, but your life to helping those who are suffering with endo. You have their backs, and that's something that, uh, that's priceless.
And the backs of like hundreds of thousands of people, if you look at it globally, like. , you have the backs of, of what, 190 million people I think it is. Which, you know, again, just closing on the power storytelling, that's pretty powerful. That's very powerful. Thank you very much for being here.
Shannon: Thank you.
Thanks so much for having me. It's an honor.
Carol: Earth's tree of Life is expanding new species were discovered in 2022. Is that amazing? I mean, I'm so, it's so exciting that this happens, that we haven't like killed off all the species and that there are new species being discovered among the new species. We're 44 lizards. God, I love lizards. 30 ants.
How many species of ants are there? 14 flowering plants. Couple of them are onions. And onions are really good for cleaning up toxins in your system. So eat more onions. 30 sea stars. I grew up calling them starfish. Um, but I love sea stars. That's such a great term. Seven fish, four sharks, three moth. Two spiders and one toad.
We live in a totally magical place, so let's make sure that we stop companies from polluting the out of it and harming us. Thank you, angel and Marielle for another fabulous episode of Hello Uterus. Thank you Shannon Cone for taking time to be with us today. You are an inspiration. The team at Uterine Kind.
Thank you. We are so. So grateful for all of the work that you've done over the past year, and we are thrilled to announce the launch of you by Uterine Kind, an app that helps you connect the dots on your symptoms to shrink the time from symptom onset to diagnosis. You'll find amazing members-only content stories, podcasts, medically reviewed clinical curriculum and research studies summarized just for you so you can become a citizen scientist of your own.
Head over to uterine kind.com and join today for as low as $8 and 33 cents a month. Walking the talk, we donate 10% of all membership fees to research labs seeking answers to our most pressing questions about the female body. So we invite you to join in our mission today@uterinekind.com and follow us on Instagram at Uterine Kind.
We'll be back next week with another episode of Hello Uterus. So till then be well. Be cool. Be kind.
Angel: The Hello Uterus podcast is for informational use only. The content shared here is not used to diagnose or treat any medical condition. Please ask your physician about your health and call nine one one. It's an emergency, and thank you uterine kind for listening.