Update on The State of Women’s Health Research with Shannon Cohn, producer of Endo What? and Below The Belt

Dr. Jessica Drummond (00:00:03) – Hi and welcome to the Integrative Women’s Health Podcast. I’m your host, Doctor Jessica Drummond, and I am so thrilled to have you here as we dive into today’s episode. As always, innovating and integrating in the world of women’s health. And just as a reminder, the content in this podcast episode is no substitute for medical advice, diagnosis, or treatment from your medical or licensed health care team. While myself and many of my guests are licensed healthcare professionals, we are not your licensed healthcare professionals, so you want to get advice on your unique circumstances. Diagnostic recommendations treatment recommendations from your home medical team. Enjoy the episode. Let’s innovate and integrate together. Hi there and welcome back to the Integrative Women’s Health Podcast. I’m your host, Doctor Jessica Drummond. I’m the founder and CEO of the Integrative Women’s Health Institute, where we educate women’s health and wellness professionals to get root cause healing for their clients with a wide array of women’s health conditions using nutrition, lifestyle, medicine, and all kinds of cutting edge root cause solutions.

Dr. Jessica Drummond (00:01:29) – Today, I’m really excited to share with you an interview that I had recently with Shannon Cohn. She is a rock star when it comes to advocating for support for women with endometriosis and getting funding large, large, large funding from the US government Department of Defense bipartisan across disciplines at the NIH. She is really doing very important work, not just to educate donors and large funders from the United States government and governments throughout the world, but to also help individuals share the lived experience of having endometriosis or a similar complex chronic illness where gaslighting is involved. There is stress to the caregivers, to the extended family, to women’s ability to work and do all of the things they want to do, and really showing the world what it’s like to live with an illness like endometriosis. How difficult it can be day to day just to get the care that they need from our current system. So Shannon Cohn is a filmmaker, lawyer, social impact producer. She’s worked across Africa, Europe, the Middle East and the Americas on topics related to gender equity and combatting stigma and taboo.

Dr. Jessica Drummond (00:02:59) – Her films and TV series have aired PBS, National Geographic, the Discovery Channel, Amazon and Netflix, and her new PBS documentary, Below the Belt has been executive produced by Hillary Clinton and Rosario Dawson. This documentary highlights the social justice issues and the day to day lives of women dealing with endometriosis. In a traditional documentary style. This film is one element of a larger social impact plan to create meaningful change in endometriosis in women’s health, including large commitments towards research funding across disciplines, funding policy changes, medical education initiatives and widespread awareness. And her previous film, Endo what was called the first step in a plan for Change by Newsweek and Film of the Year by The Guardian. Before becoming a filmmaker, Shannon practiced international law and was part of the legal team that prosecuted Enron. She has endometriosis herself and has two young daughters. Thus, they have a seven times increased risk of having the disease. Like all, you know, first degree relatives of women, relatives of people with endometriosis. So welcome to Shannon.

Dr. Jessica Drummond (00:04:23) – And I just want you to focus in this interview on maybe pulling out one nugget of how you could get better care for yourself if you’re managing endometriosis yourself, check out some of the wins that we are hearing on better research funding on a more multidisciplinary perspective in this funding, in the use of this funding, and some of the ways to get better awareness among frontline providers, primary care physicians, school nurses. I think this is a really inspiring interview because. Cause there is a lot of hope. After talking with Shannon and finally we are going to have a screening of Below the Belt, a digital screening through our community at the Integrated Women’s Health Institute. So stay tuned. We will have access to free tickets for this movie and discounted tickets. If you don’t have the opportunity to grab one of the free ones. So watch your inbox for that and look at all of the links in the show notes for how to get access to those free and low cost tickets sponsored by us over at the Integrative Women’s Health Institute.

Dr. Jessica Drummond (00:05:36) – Let’s dive into the interview now. Hi Shannon, thanks so much for being here. I want all of you to welcome back to the Integrative Women’s Health Podcast, Shannon Cohn. So tell me what you have been up to lately. You’ve committed years. If not decades at this point to endometriosis advocacy. Where are we now?

Shannon Cohn (00:06:08) – Well, first, thank you for having me. It’s an honor to be here. Where are we now? I mean, you know, that’s an interesting question because I will say we’re better than we were ten years ago, in my opinion. And ten years ago is when, coincidentally, is when we started filming into what? And Below the Belt, the two films that we’ve done on endometriosis and it basically it was the situation a decade ago, not to mention, you know, in the years before that that really compelled us to make films about it, to try to actually change the status quo, because the status quo, as you know, has been the same for decades, really, where people go, you know, and ordinarily a long amount of time before their symptoms are recognized, as, you know, possibly endometriosis symptoms and the delighted actual diagnosis is longer.

Shannon Cohn (00:07:04) – And not to mention all of the vortex that is trying to find effective treatment for the individual. So better than we were ten years ago. But absolutely we have a long way to go. Yeah.

Dr. Jessica Drummond (00:07:18) – And so if we think back, you know, in 2014, trying to think about where I was in my practice, I had started doing kind of integrative endometriosis work in terms of integrating nutrition, gut microbiome optimization. And we’re now seeing some research to that effect around particular gut microbes that are potentially, I wouldn’t say causes of endo, but triggers potentially or mitigating factors that we could work with. And I think the research is also catching up to that work in terms of the immune system being such an important role, whereas ten years ago, I think the conversation was a lot more around endo being hormone driven primarily. So I think from a multi systems perspective, there’s still a huge dearth of research, but I think we’re starting to look in the right places, if that makes sense.

Shannon Cohn (00:08:18) – Yeah, honestly, I’m so excited about where things are going and where they can and I think will go as far as research.

Shannon Cohn (00:08:26) – I mean, there’s more questions than answers in this disease. Absolutely. I mean, basically for decades we’ve been treating it like a lot of conditions that primarily affect women, just kind of with sledgehammers, you know, birth control pills, surgery, a lot of things that were trying to make it like a one size fits all when it doesn’t. If anything, we know about endometriosis, it’s highly individual. I mean, symptoms present differently in different people. What certain medications or certain treatments work for one person, but those exact same treatments may not work for someone else. I mean, it really is an enormous mystery, but that’s not an excuse because it’s a mystery that we can’t solve. We need transformative amount of research funding going into this disease. I mean, to answer some of those questions, to answer the questions we don’t even know to be asking yet, but to also pull, for example, researchers and totally different fields and give them funding and, you know, encourage them to use all of the things they’ve learned in their respective fields and bring it into endometriosis and really, you know, shining a light on it in a way that we start finding ways to improve lives.

Shannon Cohn (00:09:41) – Like now, no more repetitive research that’s trying this drug or repurposing that drug or blah blah, blah. No, like truly innovative research that actually translates into real world answers for the people who have it. That’s what we need to be focusing on, and that’s absolutely what we’re pushing when we have. Conversations with people on the Hill and the NIH and other policymakers.

Dr. Jessica Drummond (00:10:05) – Yeah, that’s so interesting to me because I think, you know, you know, that my perspective and just to kind of share it with our listeners is much more essentially multi-system, if it makes sense. So endometriosis as being an immune dysregulation driven aberrant cells. And so there’s all the systems. Right. The nervous system has to be on board. The immune system has to be optimized. The gut and the gut microbiome has to be optimized. And there is probably a place in many cases where surgical removal of the endometriosis lesions in a really targeted, specific way that has gotten much better. I do think that’s improved in the last ten years, the surgical techniques and the excision surgery versus the ablation.

Dr. Jessica Drummond (00:10:54) – So just to kind of back up a minute. So you started this work of creating films and oh what. And below the belt, what was the purpose as a spark as a vehicle for funding. How did this all start?

Shannon Cohn (00:11:10) – Yeah. Well, thanks for that question. So basically it started because I was very fortunate. First of all, I had symptoms of endometriosis when I was about 16. And I, like so many people chase symptoms went to really great specialists GI urologists, neurologists, endocrinologists like really chasing symptoms for years. And I didn’t hear the word endometriosis until I was 29. So 13 years of really being proactive and being informed and thinking that I was, you know, an empowered person, educated, very entitled as far as like having access to healthcare providers that should know and some of the best healthcare, you know, systems on the planet and still, you know, couldn’t find answers and it still took 13 years. And by the way, I’m going to talk about infertility. Just just so if any of your listeners just want to make sure that they’re aware of that.

Shannon Cohn (00:12:04) – But moving forward with my own story, I had miscarriages and had symptoms and really it affected my professional life. It affected my personal life, and I was very fortunate and very fortunate. I have two daughters, but I just had my second daughter, and I read a journal article about the seven times increased genetic risk between mothers and daughters and among sisters, and that really terrified me and galvanized me to action in a way that I hadn’t been before, at least really considering like, oh, what can I contribute to, you know, this field or this landscape at endometriosis? I’m a lawyer and a documentary filmmaker, and I had been working in New York building social impact campaigns around different issues. And it was that moment and that spark, just thinking about my own daughters, you know, going through what I had and how nothing had changed in the 20 years since. I’ve no had symptoms that I realized I was like, wait a second, it doesn’t seem like anyone’s trying to fix this problem. Of course there are people, you know, but it seemed like it needed something else.

Shannon Cohn (00:13:07) – It needed an end run around the systems in place that didn’t seem that felt stagnant or felt stymied and bureaucratic. And just really it occurred to me that really everybody that the stakeholders in this disease are okay. It’s the patients who are the ones who are really losing out here. And until the patients drive change, we probably wouldn’t have real, meaningful change. So I had learned that filmmaking storytelling narratives can actually create large scale social change. I’ve seen it happen. I mean, I’m sure, you know, everyone listening has to. If you think about a lot of other films, you know, looking at very larger social issues, and when they tell stories about it and people start to care about the subjects and the films, by extension, even if they’re not personally affected by it or they don’t think they are, then they start caring about the larger issues at play. So at first I thought I would make a film about endometriosis, and then as I was interviewing experts and talking to people who have endometriosis, I started realizing, actually I feel like two films are needed, and the first was really just to give an accurate base of knowledge about the disease.

Shannon Cohn (00:14:19) – Like what it is, you know, what are typical symptoms, what are some of the landmines around the disease, what are the common myths and misperceptions? So basically, all the things I wish I had known at 16.

Dr. Jessica Drummond (00:14:32) – Yeah, I literally what is endo?

Shannon Cohn (00:14:35) – And that came because I was telling so many people I was making a film on endometriosis, and I can’t tell you how many times I was endo what endo what? And I just started laughing with my husband, who’s a producer as well. And I was just like, we should just call it Endo. What, because that’s exactly what people say. Then it just kind of stuck because it just got to be just ridiculous. Because that’s what I would hear every time. And so that endo what really is meant to give that. Base of knowledge. It’s not meant to give individualized, you know, advice or anything like that. It’s just meant to give basic information about a disease that it seemed so hard to find. And then with below the belt from the start, I knew I wanted to make a film for the mainstream to really tell.

Shannon Cohn (00:15:18) – Like in traditional documentary format, where you meet subjects, you go into their lives and in intimate and authentic way. And props to the subjects. By the way, the four people in the film who are profiled and below the belt, because they’re really brave and allowed, you know, a film camera into their lives and very intimate and painful spaces. But to their credit, that’s what actually moves people, because they don’t have to have endometriosis, and they have that shared experience with the subject on the screen, or the shared pain, the shared joy, the shared hope. Then it brings all of the audience and all the people who see the closer together and closer to the issues and hopefully caring about what we’re all trying to do.

Dr. Jessica Drummond (00:15:59) – Yeah, absolutely. So there’s the foundational film that really explains what endometriosis is, and that’s valuable for individuals experiencing it, but certainly also for their families, for their health care professionals, everyone in their lives. And I think, you know, I’ve worked in complex chronic illness for a long time, and I think all chronic illnesses have this challenge where the medical system is set up to be very siloed.

Dr. Jessica Drummond (00:16:31) – Like you said, you saw GI, you saw a gynecologist, you saw your gynecologist. There was not a person kind of looking at these systems in coordination. And we see the exact same problem with things like interstitial cystitis or vulvodynia, or because you could have the same exact symptoms with many different drivers autoimmune disease, post-viral syndromes, chronic Lyme, you know, these all are very similar kinds of challenges because as you said, two people with endometriosis could require vastly different intervention, may have different symptom drivers, may have different root causes, if you will. And so when you think now that you’ve got so much credibility and you’re speaking to researchers and more importantly, funders of research, and you were saying earlier that you’re trying to get like a new perspective on how research is done and funded, what’s going on with those conversations now, because I do think we’re starting to get a few models. I was speaking to one of the researchers at an Endo summit a couple of years ago, and he was really not too interested in this.

Dr. Jessica Drummond (00:17:43) – But there in Alzheimer’s research, there is now some really interesting functional medicine research that looks at this from a very multi systems perspective, which is, I think, the same kind of research we should be doing in Endo. Is this person also exposed to mold? Do they have chronic inflammation? Do they have underlying pathogen burden or you know are there nutritional shifts that could make a difference. Because as you said, there’s not like one endo diet or one pill or one surgery. Even so, how is that conversation going? Any interest from anyone. Yeah.

Shannon Cohn (00:18:28) – Yeah. So there is interest and I will say I’ve learned how to frame it. And I’ve gotten advice from people who’ve been working in this space for a really long time, medical doctors in Washington who are with the NIH, for example, telling me and literally an NIH director told me, like, it’s really important what you’re doing. It’s so important, and we want you to succeed. Don’t say gynecology or endometriosis too soon. And I thought it was really interesting.

Shannon Cohn (00:18:56) – And it’s just because she had learned in her own career, and she happens to be an ob gyn, but she’s just like when I want people to pay attention, I’ve learned to meet them where they are, you know, and then bring in gynecology or in your case, like endometriosis, when you have their interest in a broader sense, which makes sense. And I by the way, I have taken that advice and I have seen it work where I speak more about and which is true endometriosis. It’s really a perfect, awful storm of so many things that affect women’s health care and gender inequities. In health, we’re talking about menstrual taboo and stigma, gender bias, racial bias, lack of informed consent, gaslighting, access to care. When you have barriers such as financial barriers something we all deal with regardless of condition, but certainly with endometriosis, cultural barriers and institutional barriers like insurance systems and Medicaid systems, like all of the things that are in place. That dictate how and whether we receive care and what type of care it is.

Shannon Cohn (00:20:04) – So when I couch it in those terms and say that we are looking at all of these expansive issues told through the lens of a condition that affects approximately 200 million people on the planet called endometriosis, then people pay attention because they understand where I’m trying to go and they understand that they should care about it and we should all care about it. But it’s really just about knowing and learning. And I had to learn like, this is the way if you are not personally affected by endometriosis, this is the way maybe you can get other people to get them to care about it and feel that even though they don’t have it, even though maybe their mother or their daughter or sister doesn’t have it, they should care about it. Because I mean, absolutely, they love someone who has it. It’s just a fact. It’s just way too pervasive, but not only on the individual level, on the societal level, about just the impact on lost wages, less productivity associated medical costs. We’re talking about billions of dollars and really, like, shouldn’t we all care about it for our next generations? And making sure that, for example, like people’s pain is taken seriously and that we have systems in place that are able to diagnose symptoms and conditions efficiently and not aren’t kind of buried in cycles and silos, like you say.

Shannon Cohn (00:21:25) – And the onus is always going to be on the patient to be kind of their coordinator, you know, the person who’s bringing it all together. I think that’s a lot to ask someone who is sick, you know, and dealing with chronic illness to ask them to do that. So to answer your question, the conversations are changing because we are consciously changing them and making sure that that policymakers and decision makers understand they should care about it, you know, and I think that is reflected like this film screened for all 27 institutes of the NIH in December, and that screening was co-hosted by two NIH directors. And there encouraging a multi systems approach to the disease that they wanted all 27 institutes to see the film and be privy to this discussion, because they are encouraging people from researchers from different institutes to start maybe looking at women’s health conditions and conditions like endometriosis. I think we see it in the Biden administration’s Women’s Health Research Initiative, where endometriosis is mentioned by name several times, you know, alongside menopause and maternal health and autoimmune conditions, the fact that endometriosis is actually called out is a huge step forward.

Shannon Cohn (00:22:33) – It means that they’re paying attention. It means that they see the need. And I do think we’re going to get that transformative amount of research funding. We just have to keep pushing.

Dr. Jessica Drummond (00:22:42) – Yeah. And so that Biden initiative actually is a pretty substantial amount of women’s health research funding, more than I’ve seen really in my career. Any other wins we could maybe celebrate in this moment?

Shannon Cohn (00:22:57) – Yeah, sure. I mean, we’re working in a bipartisan way in Congress, for example, and really getting ready to ask for a lot of funding. We’ll say, let me count all the zeros, like nine figures of research funding specifically earmarked for endometriosis, and that has bipartisan support, and that should be announced momentarily, very, very soon, that the DoD, we’re working with Congress to make sure that the ad continues funding endometriosis research. I mean, I think there are a lot of wins going on right now and not just in the US. I mean, honestly, a lot of our co advocates and co organizations in the UK and France and Denmark and Australia of course.

Shannon Cohn (00:23:42) – So I think kind of leads the way, you know and really pushing changed endometriosis on the systemic level forward. So I mean I think the more that we can support each other, complement each other, collaborate, we all win.

Dr. Jessica Drummond (00:23:58) – Is there anything specific that you are interested in seeing more particular work done in certain areas that feel like good rabbit holes, that we should be really heading down?

Shannon Cohn (00:24:12) – You mean in research or in?

Dr. Jessica Drummond (00:24:14) – Yeah, mostly first in research. And then I’d like to talk a little bit more about what you mentioned earlier in terms of the clinical and the just how women are treated by the medical system. But to finish up this sort of research conversation, is there anything really interesting that’s going on that will be really supported by this funding?

Shannon Cohn (00:24:35) – I would say I’m really interested in the fact that research is showing that there are different phenotypes of endometriosis. There are different ways that it present in different people, and I would love for there to be a robust amount of funding to really explore that and identify those phenotypes, because once they’re concretely identified, then we can start developing targeted therapies so that people when they present with endometriosis.

Shannon Cohn (00:25:00) – In a certain way. They’re not presented or given, you know, the sledgehammer treatments? No. They have more targeted, nuanced treatments for what exactly is going on in their body. That’s what I’m most excited about.

Dr. Jessica Drummond (00:25:13) – And, you know, particular biomarkers around those things, you know, whether they’re immune markers or got microbiome markers or hormone markers.

Shannon Cohn (00:25:24) – Oh, absolutely. That would be revolutionary to have a non-invasive diagnostic tool like biomarkers, or is something that a person can go into any healthcare providers office, take a test and they’re given greater than 99% certainty to that they have endometriosis. That would be revolutionary.

Dr. Jessica Drummond (00:25:41) – Yeah, yeah. Because the surgical diagnosis, I think is a real barrier for many women. Okay. So now, you know, one of the things that the movie, which we strongly encourage everyone to see, we’re going to be having that screening very soon together. I think one of the reasons I really think it’s important for everyone to see this movie is that there is really a dearth of understanding about how problematic the medical system is for women in general.

Dr. Jessica Drummond (00:26:13) – And one of the simplest ways that I experienced this recently, that I really hadn’t thought of because I’ve been in the medical system, if you will, since, you know, I was 24 years old or whenever I graduated from physical therapy school, it’s hard to really see it when you’re in it. The level of bias and gaslighting. But I have a 20 year old daughter, and I took her when she got her IUD placed like a year ago, and I never had an IUD, and it didn’t occur to me how painful that would be and how little anyone would care. And I think a simple conversation around that. And that’s something that many women have. It’s not even thought of. Could you imagine if men had to do that? Like it would be such a different conversation. So and then endo the level of pain, how chronic it is, how often it is, how intense it is, how much it distracts women from their work, and yet still and not just their work, but their regular lives, their day, their dating, their sports, their exercise, their high school SAT scores.

Dr. Jessica Drummond (00:27:20) – Like everything. And similarly, you know, women can go 13 years. I think the average is 12 to 15 years to diagnosis even now. What is the movie really add to that conversation? And have you seen any sort of light bulbs going off within people that have the capacity to really make change?

Shannon Cohn (00:27:41) – Yes, I mean, society, we’re inundated with data. We have lots of data, we have lots of information, we have lots of statistics that we all know that people should care about. The movie adds meaning in emotion to the data in a novel way. It really in tandem with data. You can change hearts and minds, and by that change policy, that’s the goal of the movie. The goal of the movie is meant to be a tool for patients to utilize, for health care providers to utilize, for policymakers to utilize, for researchers to utilize, to share. Like this is why this topic is important. This is why endometriosis, but also these larger issues within women’s health, like you’re talking about with your daughter and taking women’s pain seriously.

Shannon Cohn (00:28:22) – That’s why those conversations matter. And, you know, we’ve screened this film around the world, and I’ve been at a lot of those screenings in person, and I believe I’ve asked on every continent the audience during the Q&A and I’ve said, how many of you feel like you’ve gone into a healthcare providers office for endometriosis, or really any health care condition and not being taken seriously or been minimized or gaslit? I mean, a majority of people of women raise their hand without fail. It doesn’t matter if we’re talking about in Asia and Europe, in the Middle East, in the US, like I have asked that in Latin America. I’ve asked that question. Everyone does. And not only that, a woman spoke when we were in Ireland and she said, I am a medical doctor and I am not believed when I by my colleagues, when I’ve communicated my symptoms like what is going on here that we minimize or dismiss women’s pain to such a degree that you who work in the medical field are dismissed. And like in the film, as people will see, Jenna, who is one of the main subjects, is a registered nurse.

Shannon Cohn (00:29:27) – And she recognized early that as a person of color and a woman, when she took her partner, who happens to be a white male, into the emergency room or into clinical like she is believed more, the doctor believes her symptoms more, and it got to the point where she would sometimes even let him talk for her. And he has a software programmer. I think that’s right. I always get that right. He’s in tech. My point is he’s in tech, not in the medical field.

Dr. Jessica Drummond (00:29:56) – And she is.

Shannon Cohn (00:29:57) – She’s obviously she’s a registered. And she could tell because she’s a very perceptive individual. She could tell they believed her more, and it just got to be a practical consideration. Like, I think we all are like, I’m tired of this. Just come, let’s do this so I can get the result that I need, you know? And I think so many of us do that all the time. Like my mother who goes to the mechanic. Sometimes she’ll ask my husband to go with her, not because she doesn’t know what’s going on, but she’s like, they’ll listen to me more.

Shannon Cohn (00:30:27) – They’ll take me more seriously. If you’re there, you know, with me. And it still floors me that this is what we’re faced with. But it’s interesting how we have to just work the system to make it work for us.

Dr. Jessica Drummond (00:30:39) – Yeah, yeah. And I guess so in the short term, for individuals who are dealing with endometriosis, similar complex chronic illnesses or pelvic pain, we can learn from that practical consideration. Ideally, we would want the system to change, but in the short term look, if you have to bring a male partner with you, if you have to bring a white person with you, I mean, again, it’s blood boiling, but it’s the current reality. And clearly it’s not just in the United States, which is very interesting because there is a lot of conversation around, you know, would this be better with a more socialized system? And I think having clients and colleagues all over the world, Canada and Europe, where the systems are most socialized like, on the one hand, there is some more equality of care among certain things, but it’s also more difficult to get access to certain kinds of care.

Dr. Jessica Drummond (00:31:35) – So we have this kind of double edged sword. There isn’t an obvious ideal health care system, but at the core, the other thing we’re saying is that the misogyny and the racism is so deep globally that if you’re an individual dealing with a complex chronic pain condition and you’re a woman bringing a male or a person who is white will actually enhance your safety. And that’s sad, but important.

Shannon Cohn (00:32:04) – Yes, I see it all the time. And I’ve seen health care providers kind of admit to the bias. Like, you know, it’s a subconscious bias, but it’s there. But I mean, I think the first step is calling it out and bringing it, you know, shining a light on it and helping people be aware of all of our, you know, the biases we, you know, operate with every day. And I mean, hopefully that’s where we start. And then sharing stories like we’re doing in films and in other ways.

Dr. Jessica Drummond (00:32:31) – So what have you heard from people who have seen the film? It’s been out for a bit now that how has it helped them, either individually or if they have family members with endometriosis? What are some of the feedback you’re getting?

Shannon Cohn (00:32:45) – I mean, of course people feel seen and they feel like they can share it with the people around them professionally and personally so that without having to tell someone directly, they can share the film in a way that communicates the lived experience of what it is to deal with endometriosis and conditions like it.

Shannon Cohn (00:33:05) – I’ve had several partners come up to me and say, thank you for highlighting the role of the caregiver and how this disease affects the caregiver, whether that’s a parent or a partner. Both, you know, like they’re just obviously it’s like a ripple effect. This disease. Yes, it affects the person who has it, but it absolutely affects the circles around them. So I’ve heard that I’ve heard a few people say that. They think, you know, that it’s saved their relationship, you know, because they gain a much better understanding of what the person was going through. And it validated that experience. And, you know, we’ve screened this film or in the process of screening the film and medical schools around the country. I mean, I think we’re at about 20 medical schools so far, which is really incredible and really interesting feedback from there, you know, is that using as a platform to have these conversations and helping medical school administrations, like really consider it when they’re thinking about the directions of curriculum and things that their students should be caring about and focusing on.

Shannon Cohn (00:34:10) – I will say, overwhelmingly, the students have been incredibly passionate and very supportive of making sure endometriosis has a better, I guess, educational like emphasis in medical education. So that’s been really gratifying. I mean, with nursing schools and our school nurse initiative, we’re re-educated thousands of school nurses, I mean, overwhelmingly positive. We have a survey that we asked the nurses after they, you know, review the materials and watch the film about like, what was the most helpful, least helpful, what, you know, are they able, they think, to recognize endometriosis? And I was reading some this morning and they were just like, I’m so excited that this is out there. But I’m so enraged at the same time that the deficits are still there. I had no idea. You know, so having feedback like that is really interesting and gratifying because we should all be angry when confronted with this situation. Like so, just knowing that there’s a school nurse now this morning who did not really know about endometriosis and now knows and can recognize symptoms and not only knows all of that, but is also enraged that this is happening.

Shannon Cohn (00:35:22) – That is an incredible motivator. And then I just think about not only the teenagers or adolescents or even pre-teens that she sees now. Maybe their lives will be different. But think about all of the future years and all of the countless lives that are affected by that one nurse. And if we can just educate that one nurse, the ripple effect is really dramatic and it can be dramatic. So I have a lot of hope for educating health care providers as far as just sharing the lived experience. You know, like, yes, you go to medical school, you go to nursing school, and you get a lot of really good information in to help people. But how many times are you actually confronted with the true lived experience of what a condition does to someone? And I think that is the value of the film, not only for the patients, but also for the providers and all of the other stakeholders that I mentioned.

Dr. Jessica Drummond (00:36:15) – Yeah. You know, I think that’s a really good point, because in fact, in very few cases of like when you’re in graduate school learning about the different disease states and diagnosis and symptoms and therapies, it’s actually never really a part of the training to get the perspective of a person living with any disease.

Dr. Jessica Drummond (00:36:39) – The only way you really do that is when you’re in your clinical education, and that’s if you happen to come upon it. And if you’re, you know, supervisor, if you will, your teacher out in the field has that awareness. So that’s actually revolutionary, not just in endometriosis care but in general to bring a lived experience perspective on the other side of the table to the physicians and nurses and all health professionals. And I’ve been educating health professionals now for, you know, 20 years. What’s so interesting to me is that we think there’s a sort of great divide between health professionals and patients. But the reality is, health professionals are humans who often have some of the disease states or symptoms or syndromes or whatever that their patients also do. That’s often some of the motivators for them going into certain specialties or their family members or whatever, and sometimes not. Sometimes it’s just, you know, a specialty interest. But I think when we talk about the health care system, there isn’t like two different kinds of people.

Dr. Jessica Drummond (00:37:50) – Everyone’s in the health care system as a patient, you know.

Shannon Cohn (00:37:55) – Yeah. And, you know, I’ve said that I was asked to speak at a conference last year to provide the patient perspective. And I was like, interesting. Okay, what am I going to say about the patient perspective? It was happened to be to gynecologic surgeons. And I was like, what am I going to say to actually? So they’ll get it and they’ll actually understand. You know, like I said, it just me talking for 25 minutes about this is my perspective. And I’m a patient. And, you know, I mean, the point I really tried to make, I ended up showing clips of the film, actually, and just said, you don’t actually need me to talk to you for 25 minutes. I want to take you into a patient’s life. I mean, the issue is, is like even in clinic, you’re just seeing that part of the patient. You’re not seeing their hopes, their dreams, their lives, their careers, how it affects their parents, how it affects their partners or their children or all of those aspects that the film does.

Shannon Cohn (00:38:46) – So I share different aspects of the film, you know, with as part of this speech or this talk. And then I said, please, I just want to remind you that we are all human, you know? Yes, you’re a provider. Yes, I happen to be a patient. But at the same time, we all have the shared experience of being alive right now. We have hopes, dreams for our children or our families, and there’s not just one side of any of us. So I was just trying to encourage them to not just treat endometriosis, but treat people who have endometriosis. And I mean, it’s difficult, but I think we have to try, like you say, to show the complete human experience and find that shared that common humanity. Because if we could all get there, then, I mean, I mean, I think we could all benefit. So.

Dr. Jessica Drummond (00:39:38) – Yes, 100%. So a lot of the work that you’re doing around getting funding is around funding specifically for research.

Dr. Jessica Drummond (00:39:46) – Is there anything going on with either your work or work you’re aware of? Because I think one of the main problems we have in providers, being able to give that whole person multidisciplinary care is that provider. In their roles at work are under a tremendous amount of time and productivity pressure, which makes it very difficult to listen to the stories, to take into consideration everything that I teach for our health coaching students in terms of and our functional nutrition students in terms of listening to their stories. Creating a shared vision, goals, you know, integrating everything you just talked about that they can do that in kind of small private practice, autonomous private practice settings, but those are less and less available. It can be expensive for everyone to run that kind of a practice because it’s very difficult. You know, there isn’t really any reimbursement for that. Is there any larger scale work going on that you’re aware of to try to fix the system in any way?

Shannon Cohn (00:40:50) – I mean, I think there’s a lot of work going on, and that’s not just one thing.

Shannon Cohn (00:40:54) – And this is a much larger conversation for sure. I mean, I think we’re all trying to really move more toward patient centered care and to have less of those time constraints and really, you know, recognizing them and trying to do something about them and push back on kind of like the profit driven system that we have in place, you know, just in health care and all of the influences going on. Honestly, for right now, I think it’s a win. If you go into a frontline provider’s office and you share your symptoms and they say as they’re thinking about the things that can be endometriosis pops up on their mind, that’s a win. But right now that’s a win. And that’s something that we’re working on. And I mean, I think we have to start. I’m very practical person. Like let’s start there. And then that saves time. I mean, think about how much time would that say if actually if that were just on the radar of every frontline provider.

Dr. Jessica Drummond (00:41:46) – Absolutely. And even school nurses, because then you’ve got differential diagnosis.

Dr. Jessica Drummond (00:41:50) – It’s not just GI or anxiety. When someone’s 12, you could save that individual 15 years.

Shannon Cohn (00:41:59) – Yeah. And that’s why for example like as far as like changing the system, it’s like a top down approach and then a bottom up approach to, I mean, a grassroots approach of, you know, educating every school nurse and educating as many healthcare providers as we can individually. That’s all important. But at the same time, it’s working in a systems wide approach where we are partnering with large, you know, professional associations, and they share with all of their thousands of members, and they invite a conversation about how the systems are in place and what could they do better. We’re in the middle of having those conversations with organizations around the world and the public and private sector, and a lot of interesting conversations lately around in the private sector where companies have asked to screen the film and they’ve done it as part of like really having a larger discussion around health equity in the workplace and really using it as kind of a platform to have a much larger and incredibly important conversation, to make sure that all employees feel supported with their work and different accommodations that may be needed.

Shannon Cohn (00:43:09) – Is it going to solve everything? No, but it starts the conversation. If the conversation wasn’t already there.

Dr. Jessica Drummond (00:43:14) – Well, and I think what you’re bringing up is a really important point, because there’s the health care system, if you will, hospitals, clinics. But people are living their lives with chronic illness, work in schools. So is opportunity, I think, for thinking outside the box in terms of this is happening in the menopause conversation. One of our health coaches, particularly in the United Kingdom, is doing a lot of work on what do employers do to create safer spaces and more supportive spaces to keep their really skilled, experienced, upper level management. Women who are in their 40s, 50s, you know, they don’t want all of these women to quit. That’s very costly from a business standpoint. So I think we could argue the same thing for women and people in general who have complex chronic illness, to be able to work with. Some of the accommodations that we learned during Covid are not that difficult, in fact, actually may improve productivity.

Dr. Jessica Drummond (00:44:21) – Things like working from home, flexibility minor, not even minor, but like shifts. Having dealt with a chronic illness myself for a few years now, like not having to put makeup on changes the amount of energy, you know, it’s real like and I’ve heard from women of color not having to really put too much effort into your hair changes a whole lot about the kind of energy that you can give to your work. But if certain things are required and you’re not being taken seriously without that. You know, I think for women, that’s a bigger conversation than we would think with these kinds of energy limiting conditions, because I would put endometriosis in that category. It takes a lot of energy. It’s a mitochondrial drain to live with endometriosis. Would you agree?

Shannon Cohn (00:45:14) – Absolutely. I mean, yes, and I think that the further we can move toward those conversations where different accommodations are welcome and encouraged and considered, you know, by employers, for example, then like you say, I do completely agree that productivity will actually increase.

Shannon Cohn (00:45:34) – And it is hard to go back, you know, after, because I’ve had a flexible I work from home most of the time when I’m not traveling, and I’ve been probably the most productive. I’ve been, you know, as far as like professional life and really encouraging people to question, you know, the models at play and who they benefiting and are they actually benefiting?

Dr. Jessica Drummond (00:45:56) – Yeah. Are they just tradition, you know.

Shannon Cohn (00:45:59) – Right. Is it just because it’s always been that way and maybe upper level management thought that was the best thing. But I encourage people to really question that and push back against that and fight for what they believe as individuals is better for them. And I think that a lot of organizations will find is actually better for the organization.

Dr. Jessica Drummond (00:46:18) – Yeah. And so I think what we’re coming to with your experience of sharing this work with so many audiences at this point is that there is this need for a lot of financial support for research, for endometriosis, for systemic change and education and the medical systems for endometriosis, and also those practical issues that individuals right now living with endometriosis or maybe suspecting they have endometriosis to be more heard because they consider the symptoms based on watching these films, you know how they might be misconstrued to something else, but also these little practical considerations like energy conserving strategies and how to be better heard in a traditional health care system.

Dr. Jessica Drummond (00:47:06) – You know how to advocate for oneself, how to keep oneself safe. And it’s unfortunate that it sort of falls on the individual who is dealing with the condition. But given that that’s the reality, at least I think this work is putting together some of those practical considerations that people can use right now.

Shannon Cohn (00:47:26) – Yeah, absolutely.

Dr. Jessica Drummond (00:47:27) – Yeah. Well, thank you so much for all of this. Is there anything else you want to share about how maybe our students, our listeners could get involved with supporting this work, advocating for this work in their communities? Anything else you want to share?

Shannon Cohn (00:47:44) – Yeah, I mean, I always tell people everyone has a role to play. No matter what you’re doing. It can be big or small. You don’t have to go to Washington and advocate. I mean, please do if you feel compelled to do that. But you don’t have to do that. There are other things like use your own skill, set, your expertise, your experience, and think about ways that you can add to this conversation.

Shannon Cohn (00:48:06) – Because we need you. We need everyone being part of this conversation. And as far as like getting involved with us, like, I mean, I would say absolutely, we would love to send a school nurse toolkit to a nurse in your area. You can come to our website and share the nurse’s information, and we’ll send over a toolkit. And then what’s really incredible about that is you’re not just changing the nurses lives, but you’re changing countless lives. If that nurse is able to recognize symptoms. So that’s a very tangible action that people can do, is find the nurse in their community and make sure they have a toolkit.

Dr. Jessica Drummond (00:48:42) – Yeah, I love that. Thank you so much, Shannon, for being here with us today. I know you have a very busy schedule, and we look forward to doing the screening in our community, and I’ll see you soon.

Shannon Cohn (00:48:57) – Thank you. It’s been an honor.

Dr. Jessica Drummond (00:48:58) – Thank you. That was a great one. Thank you so much to Shannon Cohn. She really is a force to be reckoned with.

Dr. Jessica Drummond (00:49:11) – She is doing amazing advocacy work for endometriosis and related women’s health complex chronic illnesses. She is really on the front lines getting that funding, making these movies that take the data and make it personal, show people what’s going on with their partners, with their daughters, with this condition, with their mothers, with this condition, and with their classmates and with the girls in their care. You know, it’s in middle schools and high schools in their patient population. So I hope you learned some really important nuggets. I want you to take something with you back to your practice. Think about how you could break down some of those barriers of misogyny and racism, and that may be clouding the work that you do. You know, this bias is built into us via the system. I am not immune. You are not immune. We are all dealing with this bias. And we have to have to actively work to break it down in ourselves, even for ourselves. So be very mindful of how much you even diminish maybe your own pain gaslighting yourself, not to mention your patients and clients, which is so impactful.

Dr. Jessica Drummond (00:50:28) – And then absolutely keep doing all the work that you’re doing to help these women get more complete root cause healing. Looking at all of the different systems that are not right now being emphasized yet in research at the level that they need to be, how can we get this clinical experience expanded? So, as you know, we have a certificate program in endometriosis and chronic pelvic pain. So if you are a practitioner working with women with endometriosis or any kind of complex chronic pelvic pain, you are in the right place. Join our certificate program for endometriosis and really learn how to utilize the strategies that already exists to help optimize hormonal health, immune health, gut health, gut microbiome health, and the immune impacts and the symptoms related to all of these systems nervous system, reproductive system, endocrine system. Immune and gut microbiome system. For women that have endometriosis symptoms, there is not a one size fits all solution. One surgery isn’t the solution. Birth control pills are not the solution. Many of these tools have a place.

Dr. Jessica Drummond (00:51:44) – But if we’re really going to get to the root cause on an individual by individual basis, as Shannon was saying, this is not the same disease in each person who has it. There are a variety of phenotypes. There are a variety of pain and other symptom drivers. And right now, from a functional nutrition perspective, we already know what many of them are, even if we don’t have the depth of research to confirm yet. But I’m already seeing research that’s confirming what we’ve been doing here for, gosh, 15, 20 years now. So we’re here to support you, to deepen your training so that you can be a better endometriosis provider. And I strongly encourage you to click the links in the show notes. Learn more about our cosponsored screening of Below the Belt. This is an amazing movie, especially for anyone who works in women’s health. We need to constantly remember what we’re doing this work for, who we’re doing this work for, and how we can be a better service. And as Shannon and I were mentioning, you know, we are all humans.

Dr. Jessica Drummond (00:52:53) – You may be going through this more as a person living with a condition like this. Or you may be working with a lot of people who are living with conditions like this, or you may be a caregiver. We’re here to support you no matter what. Thank you so much for joining me for this episode. Take one little nugget and let’s change our practices starting today. Thank you so much for joining me today for this episode of the Integrative Women’s Health Podcast. Please share this episode with a colleague and if you loved it, hit that subscribe or follow button on your favorite podcast streaming service so that we can do even more to make this podcast better for you and your clients. Let’s innovate and integrate in the world of women’s health.