Asha Dahya 0:00
Welcome friends! Thank you for joining me for another episode of the Repro Film podcast series, part of the brand new Repro Periodical which we deliver straight to your inbox every month. I’m your host, TEDx Speaker, producer and writer Asha Dahya, and if you’re new to the rePRO fam, in 2022 we changed things up a bit. Each month in our newsletter, we include a link to a short film that centers our chosen theme, links to articles you should be reading right now, organizations you can support, and of course, my podcast interview with filmmakers and experts. We’re all familiar with March being Women’s History Month, but did you know it is also Endometriosis awareness month? If you didn’t, don’t worry you certainly are not alone. In fact, despite the statistics that say 1 in 10 women in the US are living with endometriosis, many are suffering in silence. There are a number of reasons for this, ranging from lack of awareness, to misdiagnosis, and lack of funding for research toward endometriosis, all of which contribute to a widespread problem that deserves more education and amplification.
So this is our theme for the month, and I am super excited for our interviews in this periodical. It will actually be a two-part episode, and in this first part, I will be speaking with Jenneh Rishe, the founder and executive director of an advocacy organization called The Endometriosis Coalition.
Jenneh has been a Registered Nurse for over a decade, working in internal medicine, trauma, kidney transplant, oncology, and leukemia/bone marrow transplant. It took over 4 years, but Jenneh’s medical background gave her the knowledge and skills to navigate how to finally get good care after she was diagnosed with endometriosis. With her love for healthcare, education, and teaching, she felt inspired to use her abilities to help other women understand the disease better. She is also the author of Part of You, Not All of You: Shared Wisdom and Guided Journaling for Life With Chronic Illness. Jenneh is originally from New Jersey, and lives in Los Angeles. When asked why she felt so passionately about starting the The Endometriosis Coalition, she says “endometriosis is criminally under researched and horribly misunderstood, and I want to be a part of changing that, sooner rather than later.”
So let’s get into the discussion!
Jenneh, thank you so much for chatting with me today. Welcome to the rePRO Film Podcast.
Jenneh Rishe 2:42
Thanks for having me.
Asha Dahya 2:34
Let’s talk about the endometriosis coalition your role as co-founder and the mission behind it.
Jenneh Rishe 2:50
Yeah, of course. So the Endometriosis Coalition was founded in 2017. With a mission to raise awareness, promote reliable education and increase research funding for endometriosis. I decided to start the Endo Co after my own journey with being diagnosed for endometriosis. As a nurse, I found it really difficult to find resources that were reliable and accurate and credible. And I know that I was looking at things from a nursing perspective with a research background. So I knew that some of the things that I was finding, either the research was really outdated or the sample sizes were really small, it just didn’t seem like things that I could reliably say this is what the most current up to date info is on endo and I had to do a lot of digging to really find what was what I was running into so many practitioners that didn’t really understand the disease and weren’t really up to date about it. And so I figured if I had this much trouble, I can imagine how much more trouble for someone who’s not me and doesn’t have my background. And so I really just wanted to create a space to one raise more awareness because so many people still don’t know what the diseases within the medical population and within the general public, and to also have a place where you could go to where you knew that the information was going to be reliable that you could trust that I vetted it well. It’s you don’t have to second guess, is this true? Or is this not? And then from the research side? You know, we need more research funding. So that one’s pretty self explanatory.
Asha Dahya 4:24
Yeah, I want to get into the research bit in a little bit, but I can imagine would have been frustrating for you as someone who found out they have endometriosis, and also being in the medical profession as well not seeing as much tools at your availability can can you talk about that a little bit?
Jenneh Rishe 4:41
Sure. A lot of people are always surprised when I share that I never learned about it in nursing school. Is it part of some curriculums now maybe but it was not part of mine. My women’s health rotation was very focused on mother baby type of thing. So I know all about pregnancy, but I don’t know anything about pelvic pain. So the first time I even heard of endometriosis was when it was suspected that I might habit. And in that, I think being part of the medical community, I was just so trusting of the practitioners because they were practically colleagues. And I didn’t really think I needed to do my own research until I got a little further into things and saw that there were just so many myths and misconceptions about the disease.
Asha Dahya 5:25
And so when you interact with patients now, can you direct them to the Endo Coalition? And what kind of resources do you use now commonly?
Jenneh Rishe 5:34
There are a few kind of grassroots nonprofits that are doing the same kind of work that we’re doing just in different areas to try to just really get the right word out there. So we always forward them to places like no one, which is an organization that created a documentary to learn about endometriosis. It’s like my number one resource to tell people because especially for visual learners, it really is easily digestible and gets all the facts straight. And then we really like to use the center for endometriosis care as a resource. There are a specialty center in Atlanta, who only focuses on endometriosis work and they have an incredible database of education and research on their website. So those are the two main places that we send people. And then the third one is endo-pedia, which was a resource created by Dr. David Redwine, who was kind of a pioneer of some of the most leading treatments of excision surgery for endometriosis. He’s like the OG and created this wonderful database of information. And those were all places that I had no idea existed, what I was looking for myself. So those places we point everyone to them, whatever they’re asking us about them do.
Asha Dahya 6:48
Well, it sounds like if anyone who potentially has and comes to you, they kind of hit the jackpot and are able to get to those resources. So it’s great. And we’ll definitely share links to the places you mentioned. So let’s break it down to like brass tacks, as they say, what are some of the statistics around endometriosis? And are those accurate given the fact that there may be you know, silence and stigma around it?
Jenneh Rishe 7:11
Sure, we don’t have a ton of statistics because we don’t have a ton of research. So the main one that you’ll hear is that endometriosis affects one in 10 women of reproductive age, we actually think it’s a lot higher than that, and that so many people are undiagnosed or misdiagnosed, so they’re not counted in that percentage. So we don’t have really a great way of knowing what the exact number is one in 10 is a lot of people. And to think that there is probably way more than that. It’s kind of shocking. And then another statistic is that it takes an average of seven to 10 years from symptom onset to diagnosis, which is just way too long.
Asha Dahya 7:51
Yeah, that’s a decade of someone’s life almost. That’s insane. Well, you mentioned funding before and how finding those accurate statistics is related back to funding. Tell me about there’s a quote that I love in your bio, on your website where you said, endometriosis is criminally underfunded, let’s talk about that.
Jenneh Rishe 8:10
Over the years, when you look at and specifically talking about the US, because that’s where we are. When you look at the National Institute of Health Research funding, endometriosis for years has gotten significantly less money than diseases that affect about the same number of people from what we know, like asthma and diabetes. And I mean significant differences in funding. We’ve gotten a little more over the last four years due to some members of Congress who push for funding, but we’re still so far behind every other disease.
Asha Dahya 8:43
And what can potentially make a difference? What can people listening potentially do to help change that status quo, if at all, anything?
Jenneh Rishe 8:51
I think, talking about the disease getting involved in trying to reach out to your local legislators to get this cause in front of their face so that they can represent it for you. This is definitely one of those diseases that it’s just not talked about enough. And we can go into all the reasons why I believe that is, but I almost feel like it’s something that so many people don’t even know is happening to so many women around the world.
Asha Dahya 9:19
Yeah. And I think a lot of the like with a lot of issues that are where there’s misconceptions or you know, myths related to it. A lot of the times is personal storytelling that really opens up the floodgates and for more people to become aware of what’s happening. So March being endometriosis Awareness month we are highlighting a short film called endo and it’s out of the UK but it’s a short narrative film and there’s definitely relatable themes to it no matter where your base. Talk to us about how films and you mentioned a documentary a few minutes ago, how can films and documentaries be part of potentially raising awareness about endo.
Jenneh Rishe 9:58
They’re so important, especially in this digital age that we’re in where I hate to say it people’s attention span, digesting You know, content that’s just like paper to pen is just really short. So I think films are a really great way to capture an audience that needs to visually see things to really be captivated and understand them. And I think it kind of bridges that gap between just the population that it affects and people that we need US allies to help us and that it’s so much easier for me to just send you a film to watch than to send you research articles for you to try to understand. So it really kind of gives us a tool to advocate and spread awareness in a way that most people can understand.
Asha Dahya 10:40
One of the best parts of Endo the film that I love. And I know you’ve seen it as well, there are these recurring images of the shape of a uterus made out of items of food. So there’s a papaya there’s a soft boiled egg, which gets squeezed to indicate, you know, different types of pain. And I think spaghetti noodles for the the top of the uterus, I’m probably butchering the parts of the uterus. But you know, just that visual aspect of showing what it’s like to feel that pain. As someone who has endo, someone who’s a nurse, and having watched this film, what do you like most about that visual aspect of seeing that? The uterus in pain?
Jenneh Rishe 11:19
Yeah, I think it’s really cool to give a picture to it. Because, you know, diseases like endo, where the pain and suffering is internal, and people can’t really see it. It’s really hard to empathize with how someone might be feeling someone whose leg is or arm is broken, will get way more empathy from people than I do. Just sharing what is going on with me and the inside, we like need these visual representations to really be able to process as humans, I believe. So to have a film that shows that is just really, really powerful.
Asha Dahya 11:53
Yeah. What are some common myths or misconceptions around endo that you hear in your line of work and as someone who has endometriosis?
Jenneh Rishe 12:02
I would say the main misconception, and is the deficit, the actual definition of endometriosis? And that it’s sad to me that we can’t even get this basic thing, right. And it’s difficult for those of us that advocate because it seems like such a nuanced small thing. But the ramifications of getting the definition wrong, is pretty big. And so we’ve learned over the years that the cells that make up endometriosis are not exactly the same as the cells that line the uterus, they’re similar to. And that little phrase similar to is so important to get right because it kind of drives the force for what treatments are going to be effective. If we are looking at this disease that we think is exactly the same as the uterine lining. We have suggestions for things like hysterectomy, just get rid of the uterus, and then you’ll be fine. But it’s not the same tissue. And it acts differently. And then when we talk about hormone suppression, those hormones that we use to suppress a period won’t work in the exact same way on an endometriosis cell. And so understanding that they’re similar, but different is really, really, really important when it comes to treatment. I would also say the idea that it only affects the pelvic region. To date, endometriosis has been found in every single organ in the body. Wow. Yes, it has been found in fetuses. So it’s not just this disease of menstruation or some of these theories, that it’s just the period of going backwards into a woman’s body. The places that it’s been found that theory just doesn’t just doesn’t make sense for it to be possible. So like my endometriosis was in my diaphragm, I really highly doubt that it got there through a back flow of period blood.
Asha Dahya 13:47
It sounds so ridiculous when you say it like that.
Jenneh Rishe 13:51
Exactly. So more developed theories, but we don’t have the research into these things is the idea that there might be some type of genetic factor and there might be some type of stem cell factor where we’re born with these cells and something either triggers it to go on, or it stays dormant for a while like these are the things that we would love more research on to find out what’s the best way to treat this? Another myth is that menopause cures endometriosis or that pregnancy caught peers endometriosis, I’ve had the pregnancy. Yeah, so for pregnancy, when there is a shift in hormones, a lot of women will see some relief in their symptoms, but the disease is still there. So once pregnancy is over, and things go back to normal, they’ll find that they are usually right back where they were before pregnancy. And then with hysterectomy, like we briefly touched on the lesions are outside of the uterus. So removing my uterus is not going to solve the problem for lesions that are on my colon or my bladder or my diaphragm. So just removing the uterus is not the solution to curing endometriosis. And then another one that I think is really important is the idea that endometriosis only affects women in reproductive age like women who have the disease and it wasn’t true. In those reproductive years through menopause, we’ll still have the disease. And then young girls before they even reach their menses can show symptoms of the disease. So a lot of people are told they’re too young to have endometriosis, or they’re too old to have endometriosis. And neither of those things are true.
Asha Dahya 15:24
It’s yeah, like you said, it’s just, I’m trying to formulate my thoughts. It feels like it goes back to that funding and research and really, you know, all these governing bodies, putting more, you know, education into that. So, yeah, I think that’s really, really important. Thank you for sharing all that information. I think that’s super, super, really super motto. Of course, as with so many reproductive issues, right now, there is an added layer often linked to racism, whether that is within the healthcare system or historical bias that is present today, especially in the US. What can you tell us about how this affects women of color today in regard to endometriosis? And were there any experiences you can share as a woman of color?
Jenneh Rishe 16:06
Of course. So I know endometriosis actually, way back in the day was known as a white working woman’s disease. [Wow.] That was the profile that they felt was the majority of people who had endometriosis. And what that did, years later, even to this day is that is, that is the idea that a lot of practitioners have is that my typical endometriosis patient is a young, white working woman. And to this day, there are actually some really renowned medical institutions that had that on their website as a risk factor was being white, a white woman, until some really great advocates petitioned to have them remove it, because it’s so outdated, so false, so that that false belief still follows us today that if I, as a woman of color come in, and I’m complaining of pelvic pain, a doctor is more likely to dismiss it as like pelvic inflammatory disease. And they would be to inquire whether it’s endometriosis, which is huge. So then we’re having a lot of misdiagnosis and delaying diagnosis happening. Also, there’s definitely a socio economic factor when it comes to endometriosis research, we’re not really seeing many women of color, or people of color involved in the research. So the statistics that we cite very well may not even be applicable to all women, likely majority white women are used in the research. A lot of them require a diagnosis to be part of research. And a lot of people of color come from areas that are disproportionately affected in healthcare and don’t have access to the same health care and are getting diagnosis through surgery. So they don’t even qualify for some of this research, which is, which is really important. And then, when it comes to treating pain, there’s definitely a different experience for people of color, their pain is usually dismissed more often. And there’s actually belief a lot amongst a lot of practitioners that people of color experience pain differently than other people do. That, inherently our bodies don’t process it the same way. And so our tolerance is different than someone else’s would be. So we’re less likely to be medicated correctly, which is just terrible. For myself, I think I got lucky and that I was a person of color who also had a medical background. And so there was less bias towards me. And I think there was more belief in what I had to say, because the knowledge that I had, and where I work was very reputable. So I didn’t get really any doubt from that perspective. I think I got more out just being a woman. If I’m being honest, then just because of race, I think that that was a way bigger part of it for me.
Asha Dahya 18:52
It definitely becomes like this catch 22. You know, we need a more diverse population being studied and researched. But that population isn’t going to be reached out to you because of all these biases. Exactly. Crazy. And you know, you mentioned that women’s pain in general isn’t believed. And you know, that’s such a widespread pervasive belief. And you have been written about New York Times and people sharing individual stories. And so yeah, it really feeds into this logic problem that we have when it comes to women’s bodies and pain and getting the correct care. So I really admire the work that you’re all doing to the Endo Co. CO because it’s easy to say than Endometriosis Coalition.
Jenneh Rishe 19:32
That’s why we created the short name.
Asha Dahya 19:35
I love it. I love it. Well, it’s good awareness. And so as we wrap up here, and for someone who thinks they may have endometriosis, how would you encourage them to find the right information? How would you advise them to advocate for themselves with their doctor?
Jenneh Rishe 19:52
Sadly, this isn’t a disease where a simple Google search is going to lead you to the right place, usually, and that’s where most people will start and it’s not usually until going down all the wrong paths, that they find the right path after being led to dead ends. So our goal is to kind of shorten that time between finding the right information. By just being really loud about this disease and putting it out there as much as we can to point people towards the resources like I told you before like Endo What and Nancy’s doc and Endopedia and the Center for Endometriosis Care so that that’s the first place they’re getting their information and knowledge from from websites like us that are directing you in the right direction. I think that the more those of us who have it, talk about it and do things like this and speaking with people like you where we can drop this information. So it’s becoming more common knowledge, the better off someone looking for a diagnosis will be. But I would say the first place to start if you think you might have endometriosis is obviously to let your healthcare practitioner know. And that sounds like an obvious thing to do. But I think because of this misconception that periods are just supposed to be really painful. A lot of people don’t even bring it up to their doctors because they feel like oh, this is just part of being a woman which excruciating pain should not be part of being a woman. My rule of thumb is always it keeps you from having a social life go into work going to school, that is not a normal amount of pain. You know, cramps shouldn’t keep you from living your life. So if you’re at that point where you’re constantly having to miss things, and you can’t function, that is not a normal level of pain and needs to be assessed.
Asha Dahya 21:40
Yeah, absolutely. And where can we learn more about the work that you’re doing? And how can people support?
Jenneh Rishe 21:46
You can follow us on all our social accounts, which is just @endo.co and our website is full of resources at www.endo.co. We have a lot of things in the pipeline for our community coming soon, a ways for people to get involved and support. So just keep an eye on our pages.
Asha Dahya 22:05
Awesome. Well, thank you so much, Jenneh, for sharing all this information for sharing your story. I think it’s I’ve definitely been enlightened and educated. So I’m excited to research more on the endo.co and keep up the great work beyond just march. I know this is an important issue all year round. So thank you for the work that you’re doing.
Jenneh Rishe 22:25
Yeah, thanks for having me. I appreciate it.
Asha Dahya 22:32
So much great information from Jenneh in this interview, I deeply admire the work she is doing in raising awareness about endometriosis. If you want to learn more about her organization or get in touch, head to www.theendo.co, which we will also put in the periodical links and show notes. Stay tuned for Part 2 of this month’s episode, where I will be speaking with UK-based writer and filmmaker Elaine Gracie from the highly acclaimed short narrative film ‘End-O’, and check out the film in this month’s email.
As always, head to www.reprofilm.org to subscribe to the periodical if you haven’t already, share with your network and join our rePRO fam. Bye for now!