Summary
Andrea Dunlop interviews Kate Downey, creator of the podcast Cramped, about her 22-year journey with severe period pain, endometriosis diagnosis, and excision surgery. The conversation explores parallels between legitimate medical dismissal of women's health issues and how perpetrators of Munchausen by proxy abuse exploit the same systemic gaps, while discussing the critical need for better medical research, education, and science communication.
Insights
- Legitimate medical neglect of women's health creates systemic vulnerabilities that abusers exploit—the deception element is what distinguishes abuse from genuine medical advocacy
- Endometriosis affects 1 in 10 people with uteruses but receives minimal medical school education, forcing patients to become expert researchers to get diagnosed
- Women must take primary responsibility for their own healthcare advocacy in current systems due to knowledge gaps, but this same behavior can be weaponized by abusers
- Medical mistrust rooted in historical and ongoing systemic racism and sexism is legitimate, but must be distinguished from anti-science misinformation that exploits that mistrust
- Science communication by non-experts through accessible storytelling fills critical gaps left by medical education and can influence medical decisions more effectively than doctor-patient relationships
Trends
Growing awareness of gender bias in medical research and treatment protocols, particularly in gynecological conditionsPatient-led medical education through podcasts and digital media outpacing traditional medical school curricula on specialized conditionsProliferation of health misinformation exploiting legitimate medical mistrust, particularly around reproductive health and vaccinesIncreasing use of AI tools (like Google Notebook LM) by patients for evidence-based self-education and critical evaluation of medical informationShift toward excision surgery over ablation for endometriosis treatment despite insurance coding that treats both procedures identicallyMedical system failures in women's health creating parallel vulnerabilities for both legitimate patients and abuse perpetratorsExpansion of direct-to-consumer health content creators as de facto medical educators filling gaps in formal medical training
Topics
Endometriosis diagnosis and treatment protocolsMedical gaslighting and dismissal of women's painMunchausen by proxy abuse and medical system exploitationGender bias in medical research and clinical practiceWomen's health education gaps in medical schoolsPatient advocacy and medical decision-makingScience communication and health misinformationReproductive health and hormonal treatmentsInsurance coding and surgical reimbursementCyclical vomiting syndrome and chronic painSIBO and gut motility disordersBirth control as hormone replacement therapyMedical mistrust in marginalized communitiesFallopian tube blockage and infertilityPelvic floor physical therapy
Companies
WHO (World Health Organization)
Cited for estimating that 1 in 10 people with uteruses have endometriosis; U.S. withdrew membership
AMA (American Medical Association)
Criticized for classifying endometriosis surgeries (ablation and excision) under same insurance code despite differen...
The Public Theater
Kate Downey's former employer where she worked on Shakespeare productions before transitioning to podcasting
New York City Opera
Kate Downey's former employer in live events before founding Caveat theater
Metropolitan Museum of Art
Kate Downey conducted research and gave tours as part of startup role that influenced her science communication approach
Caveat Theater
Theater founded by Kate Downey on Lower East Side focused on science comedy; closed during pandemic
People
Kate Helen Downey
Host of Cramped podcast; endometriosis patient who spent 22 years seeking diagnosis before excision surgery
Andrea Dunlop
Host of Nobody Should Believe Me podcast; interviewer exploring parallels between medical neglect and abuse
Gypsy Rose Blanchard
Subject of HBO documentary Mommy Dead and Dearest; mentioned as upcoming episode topic on Nobody Should Believe Me
Dr. Bex
Co-host on Nobody Should Believe Me; revisiting Gypsy Rose Blanchard case with Andrea Dunlop
Caroline Criado Perez
Author of Invisible Women; book recommended for understanding gender data gaps in medical research and design
Barbara Ehrenreich
Co-author of For Her Own Good; comprehensive history of women's healthcare recommended by Kate Downey
Deirdre English
Co-author of For Her Own Good; comprehensive history of women's healthcare recommended by Kate Downey
Aubrey Gordon
Co-host of Maintenance Phase podcast; praised for health and science communication by Andrea Dunlop
Michael Hobbs
Co-host of Maintenance Phase podcast; praised for health and science communication by Andrea Dunlop
Beata Kowalski
Subject of Munchausen by proxy case followed by Andrea Dunlop; example of deceptive medical narrative
Quotes
"I think there are so many crossovers with our show in maybe a way that would be unexpected to a casual observer... there is a real problem with the experience as many people have with the medical system and that we find perpetrators find cover under those problems"
Andrea Dunlop
"90% of people with periods report some kind of period pain... 30% of people with their periods report severe levels of pain that affect their day-to-day functioning. So 30% of us are severely in pain for up to a week a month"
Kate Downey
"The deception is the thing. The deception is the whole thing in this abuse. But the parallel is so close because in both cases, women are trying to get a need met"
Andrea Dunlop
"For better or for worse, in the current system that we live in, women have to take responsibility for their own health care and their own information... we have to do so much research because there is so much bad information"
Kate Downey
"I think the answer here is more science, more medicine, more funding, more communication, not less science, worse communication"
Andrea Dunlop
Full Transcript
True Story Media. Hello, it's Andrea. We've got a fantastic crossover episode for you today with a very talented podcast friend, Kate Downey, creator of Cramped, an incredible series all about Kate's journey to discover why she was experiencing horrific period pain and the medical odyssey she went on to try to cure it. What does this have to do with Munchausen by Proxy, you may ask? Kind of a lot, as it turns out, and we will get into all of that in this conversation. In the meantime, season seven is coming. We are working furiously to get all of those episodes in the can. This has been a very big, complex season to put together, and I'm really excited to share it with you. As a reminder, if you want to binge the whole season at launch, That is a benefit of being a subscriber to the show on Patreon or Apple Podcasts, where you also get ad-free listening, access to the show's complete archive, and bonus episodes. This month, Dr. Bex and I are going to be revisiting Mommy, Dead, and Dearest, the HBO documentary about the Gypsy Rose Blanchard case, and also digging in a bit to these efforts to debunk the story of Gypsy's abuse. Dark stuff. Speaking of which, if you have never left our show a review or rating on Apple Podcasts or Spotify, we sure would appreciate your doing so. We have gotten a whole string of negative reviews and ratings from non-listeners who were angry about us having Gypsy Rose Blanchard on. And look, this kind of thing is an occupational hazard. My reporting is pretty reliably going to make some groups very mad at me from time to time, and I'm at peace with that. But if you do have something nice to say about the show, now would be a great time to weigh in. As always, thank you for listening to the show. I appreciate you. We'll be right back with my conversation with Kate Downey. Prime Video 18+. All right. All right. Hello, Kate. Hi. Thanks for having me. And thank you so much for being with us. As we get started here, can you just tell us who you are and what you do? Yeah. My name is Kate Helen Downey. I host a podcast called Cramped. And then I'm also a podcast producer on a number of other podcasts for money. But I have experienced severe period pain for 22 years. And through producing Cramped, I finally got answers to my severe period pain, got a diagnosis, and I got surgery about seven months ago. And I no longer experience severe period pain. I am so happy for you. Your show, Cramped, is excellent. It is a very informative but also fun and relatively lighthearted show. And I think it has that wonderful vibe of this is how women talk to each other about our mysterious medical experiences. Because, you know, as you say in your show, we've never really studied the female body. And it is one of those things with being a female body haver. You go through your life and, you know, especially going through anything having to do with your reproductive health. It is a mystery why half the population is such a mystery. And that's kind of the crux. And I think there are so many crossovers with our show in maybe a way that would be unexpected to a casual observer. You know, as I was saying to you just now offline, I think there are a number of conversations that I want to make sure that we are sort of having on a continual basis because there is a real problem with the experience as many people. I would say a number of real problems that people legitimately have with the medical system and that we find perpetrators find cover under those problems, which is sort of this compounding issue. And so I think it's really helpful to be in conversation with folks like yourself. But, you know, before we get into kind of some of those crossover elements, can you just tell us a little bit more about your story and like your professional background as you came into it? Because I think that is another thing that you and I share, that we are sort of citizen journalists, sojourners who found ourselves on these journeys because of a personal situation and then took it outward. Yeah, yeah. I came up in theater and live events, weirdly. So I was working at the public theater doing Shakespeare. I was working at New York City Opera. I got a job at a startup giving tours of the Metropolitan Museum of Art and researching the art. And that actually got me really into giving tours at science museums as well. And I found a love of science hiding under my creative brain, where I loved the history of science and how human it is. and loved telling the stories of how we got the knowledge that we have now. And because of that, I ended up co-founding and opening a theater called Caveat in the Lower East Side in New York City that focuses on science comedy, because I love the process of researching and then telling people these stories. So we did a lot of that during the pandemic, that shut down. And it was a very lateral move into podcasting because I had essentially been doing podcasts just live on stage. And we did a lot of like live podcast shows. So it was a pretty easy jump over to the podcasting side. And I've been doing that ever since 2020. And then on a personal level, I had experienced severe period pain since I was 14. Since I got my period, I would throw up. I would pass out. I went to the ER a number of times because I couldn't stop throwing up for like eight hours, which I now know is a fun thing called cyclical vomiting syndrome. And most people get it from migraines, but it's a neurological thing that happens in the body with extreme pain. So fun. And I am a white average sized body person, sis. I grew up middle class. I have access to doctors. I can pay for medical care for the most part. I've had insurance most of my life. And every single doctor that I asked this question to of just like, what's happening to my body? This is not okay. This is not normal. I am generally a very healthy person. Why do I throw up for eight hours when I get my period? They would give me an ultrasound. They wouldn't see anything on the ultrasound. And they would say, everything's normal. Have you take some ibuprofen? Have you tried yoga? Have you tried meditation? You might be stressed. About five years ago, the word endometriosis started coming up when I would ask doctors about it, where they'd be like, it might be endometriosis, but I don't really know about that. And I never got referred to a specialist. I never got any imaging done other than an ultrasound. And in the 22 years that I experienced this, at first, I didn't talk to people about it. I just felt like it was something that was happening to my weird body. It was something uniquely wrong with me that no one else, no doctors had ever heard of before. There were no answers for me. It was really scary and made me feel really different and vulnerable. So I just didn't talk about it for years. And then once I got into college and like out of college and I'm a yapper, so it's discomfort about talking about anything like doesn't last that long. But I mean, it's interesting because, you know, Kate, like we have in addition to being artsy, fartsy girls that found a deep love of science, which like, you know, same. I think another thing that we share is we're like around the same age. Right. I don't know how this has shifted for young women now. I really hope it has. But, you know, there was a lot of like you gross periods messaging around that. I did not have the dramatic experience that you had. However, I did used to have severe period cramps. Really? The first time I ever had my period when I was 13, I had it for a month. Yeah. That happens to a lot of people. And it really is this whole sort of thing. And then, you know, the other, the one time I ended up having to go to the ER was because I gave blood during my period. And then, like, had a vasovagal reaction where I, like, puked in the middle of school. And it's just like, you know, these are nightmare scenarios for a teenager. We're just like, you know, having a body is embarrassing, period. And like then having a period is embarrassing on top of that. And so it's like, yeah, I think there are so many layers that many, many listeners will find relatable, even if they haven't had, you know, this sort of super serious. And I was one of those people who had resolved once I had babies. And I understand that was some advice that you got from doctors about a possible solution to your serious period. Yeah, my first pelvic exam, which my mom took me to after I had my first like throw up, pass out episode, which was only like the second or third period I ever had. So she was like, I don't know what this is. This isn't what ever happened to me when I got my period. Like she took me to my first pelvic exam. I asked the gynecologist, like, why is this happening? What's wrong with me? And her advice was, oh, yeah, some women get really bad cramps, but it goes away when you have your first baby. And that was when I was 14. So I was like, not super helpful for me. Like anything I can do before that? Yeah, I mean, I had my first baby when I was 36. So it's like that's not a, you know, short road. It's like just deal with this for one to two decades. No, and a lot of people do have that experience, but a lot of people have the opposite experience where after they have a baby, their cramps and their period pain gets worse. Because all we really know is that all of the hormonal changes that happen when you have a baby and all of the physical like musculature and ligament and bone changes that happen when you have a baby, it just changes things. It just like throws everything into the air and then like it falls down in a new pattern. And so like it might help or it might make it worse. Yeah. So it's not good advice. Yeah. And having had two babies, like the degree to which it really settled on me in a new way because I had not had, you know, other than severe period cramps, which I just dealt with, I think like most people end up doing, right? It wasn't debilitating to the extent that yours were. But like you do realize, I think, if you haven't had this experience yet going through pregnancies, you're like, why don't we know more about this? This is this is the oldest medical thing that's happened. It did land on me in a new way of like, why is there so much mystery around this? And then I think you come to find out these historical elements, which I have also researched for work because this starting point of sort of your entry into the medical mystery and this very obviously legitimate medical odyssey where you are not receiving good care, where you're not being listened to, where doctors are not listening to you about what works for you, not giving additional tests when they should. it is a very strong parallel to where this abuse pattern usually starts, which is with gynecological issues, real and otherwise, with pregnancies, real or otherwise, with pregnancy complications, real or otherwise. And so it just, I think that's where so many sort of neurons were firing for me of this is the thing that is, there is this big legitimate thing that is providing cover for people who would want to abuse that system. Because I think when I was listening to your show and also just sort of, yeah, triangulating with my own experiences, right? And I think because of my family history, I have maybe a more fraught relationship with going to the doctor than other people, not certainly to the extent that survivors of this abuse have it. And then so there's all these levels of like mistrust of, you know, misunderstanding of certain pain disorders that affect primarily women. I mean, there's just so much complexity about this. And so I think it's helpful to sort of talk to someone who has been on one of these odysseys like you have, and who's also been studying it at the same time. I would love to know sort of how you got to the bottom and figured out what the solution was. There's a story that you tell early in the show about going to the ER when you were having severe symptoms and trying to communicate to doctors that you actually had found something that worked and them not being super receptive to that. So can you kind of tell us that story? Yeah, absolutely. So at various points In my menstrual life, I have had to go to the ER for period pain because and each time I've gone to the ER, it's because I have not been able to stop throwing up. So it's not even just like, oh, I have really bad cramps. Like this pain is so bad that I'm going to the ER. It's like, oh, I've been throwing up for eight hours, like every 10 minutes. And if I keep doing that, I'm going to die. Like I, I don't, I've tried everything I can do to stop it and nothing has worked. So what help, you know? And the first couple times they just gave me IV morphine, which works. It works on most things because I couldn't keep anything down. So they couldn't give me any pills or anything like that. So they had to give something to me through an IV. And one time in New York City, I had like gone down the block to an urgent care and they had like very nonchalantly been like, yep, no problem. And just popped in an IV of muscle relaxant and a saline solution to rehydrate me. And it was like a miracle. Within five minutes, my cramps stopped, the throwing up stopped, and like I had been rehydrated. So I just felt so much better. And I like walked home after like it was amazing. And I was like, oh, I guess that's the answer. Why didn't anyone else do this? But OK. And then the next time I went to the ER, which was a year or so later, I was communicating to them. I've been throwing up for eight hours. This is period cramps. This is what happens to me when I get period cramps. I can't stop throwing up. Last time this happened, they gave me IV muscle relaxant and saline. And that worked great. and the doctor was like well we're gonna give you an IV anti-nausea and I was like that's not gonna work they've tried that before and it didn't matter they gave me the IV anti-nausea I was sitting there for another hour and a half throwing up which meant it had been like nine and a half hours of throwing up every 10 minutes and it was bile it was just like I was miserable and I couldn't get someone finally they came back and they were like huh I guess the anti-nausea is not working And I was like, yeah. And then they gave me morphine instead of a muscle relaxant, which like knocks you out. Like I was then asleep for like an hour and a half. And my then boyfriend, now husband, had to like sit next to me next to his passed out girlfriend with like all the chaos of the ER happening around him for an hour and a half until I woke up. And then they discharged me and I got a bill for fifteen thousand dollars. it was like uh great uh what is happening because i had accidentally gone i had gone to the closest er which was not covered under my insurance so that was fun yeah and i think it's experiences like that you know i i think a lot about why this form of abuse that we talk so much about on the show munchausen by proxy abuse which often starts with munchausen behaviors right which is when people do these, you know, exaggerate, induce or fabricate illnesses for themselves and then seek, you know, unnecessary or extreme medical care. And I think a lot about why these forms of abuse stay so hidden. And I think one of the elements is that when one of these perpetrators is telling their story to the media or telling their story to friends and family, and if you say something like, well I took my child to all these doctors and they didn't listen and they didn't know what was wrong with her and they just sent me on my way and they were condescending and it's like I think that really tracks for people because they're relating it to an experience that they've had and not factoring in the element that that person is not telling the truth because most of us when we go to the doctor, or especially when we take our child to the doctor, we want to be well. We want our child to be well. And if that's not your intention, then that's very different, right? But I think that's a huge reason. Like this is a pervasive experience. And what have you found talking to other people who've been through this, talking to experts? I think anecdotally, it seems like a lot of women have this experience. What have been your findings? Have you kind of gone on this journey and found out how common this type of thing is? Yeah, well, first of all, for anyone listening who experiences severe period pain or ever has, you are very much not alone. 90% of people with periods report some kind of period pain, some kind of cramping, some kind of like pain that goes along with their period. 30% of people with their periods report severe levels of pain that affect their day-to-day functioning. So 30% of us are severely in pain for up to a week a month, and sometimes more if you have irregular periods or very long periods. So there are a lot of things that can cause that kind of pain and things that are like gynecological in nature, but also things like malnutrition. There are a lot of things that can cause it and a lot of conditions that even gynecologists are not aware of or well-educated in. Um, endometriosis is kind of the big offender here. Uh, WHO, which we are not a part of anymore here in the U.S. Oh, and we'll get to the R.K. Junior of it all in a minute here. Oh, boy. My list. Oh, boy. But, uh, the WHO estimates. Yeah. The WHO estimates that one in 10 people with a uterus have, uh, endometriosis. And one of the main symptoms of endometriosis or can be one of the main symptoms is extreme period pain. And so that is one in 10 people. And that endometriosis, if it is taught in medical school, is like a paragraph. And so if you are a gynecologist, one in 10 of your patients has endometriosis and you don't know anything about it or how to recognize it or what to do if you think someone has it. That's wild. Like that would be like a spine doctor who's like, oh, I just never studied that one vertebrae. Like I can recognize anything that wrong with it I can help you with that at all It like that we would not accept that incompetence in any other part of the medical profession But because it is only women who are affected by it and it largely affects our quality of life, we do not live within a system that prioritizes quality of life. They do care when it becomes a problem for having a kid. That is when a lot of people get diagnosed and treated for conditions they have had and have been causing them pain their entire menstruating lives. And it often does not get found, diagnosed, addressed until it is a problem for them getting pregnant. So that sucks and is very much like what happened to me. Yeah. What did you finally discover was the issue causing this for you? And what was what was the solution? Get ready because there's an M. Night Shyamalanian twist. But at first, it seemed very straightforward. After doing some research and talking to a few gynecologists, not my gynecologist, but gynecologists I reached out to to interview for the show, it was suggested that I go see an endometriosis specialist to see if I could get diagnosed with that. I went to see one of the top endometriosis specialists here in L.A., which costs a lot of money because most endometriosis specialists don't take insurance. And it's not because they suck and they're greedy. It's because the way the AMA has categorized endometriosis surgery, if they take insurance, insurance only reimburses them like $600 for what can be like a seven or eight hour surgery that is highly skilled and requires. So it's like they can't. They literally can't take insurance. Why is that? Why does the AMA classify it that way? Oh, if you want to get into it, we can get into it. But essentially, there are two kinds of surgery that are done for endometriosis. One is called ablation, and it's essentially like cauterizing or like burning off the surface of the endometrial lesions. And actually, let me define endometriosis real quick. Endometriosis is when cells that are similar to the lining of your uterus or your endometrium appear in the body outside of the uterus. So cells that are similar to the cells that are inside your endometrium, for some reason, are somewhere else. And they can be literally anywhere else in your body. Like there was recently a case where a woman had been having wrist problems for a long time, had been like having physical therapy, having like getting checked for arthritis. This was a young woman. And finally, after doctors, doctors, doctors, scans, scans, scans, they realized she had an endometrioma in her wrist. But most often it is in the pelvic cavity. So it is like close to your uterus, but outside of it. They can just wander, wander all hither, thither and yon throughout your body. That's kind of wild. Well, the old theory was retrograde menstruation, which is when, because our fallopian tubes are just like open tubes coming out of our uterus, what happens and is normal in periods is you're menstruating and some of that blood just goes through the fallopian tubes and out into the peritoneal cavity. It's just like hanging out there and the body cleans it up. But that is where it was thought that endometriosis came from. That is not what they think anymore because it has been found in so many other places in the body. And it has also been found in fetuses and fetuses in like stillborn births. So babies who clearly have never menstruated before can have endometriomas and endometrial-like cells outside of the uterus. And so now it's seeming like something that is happening while our bodies are being formed. It's maybe something even like as early as like a stem cell dividing into and like specializing into early cells might just be like making a mistake. And that's we don't know. There's some research happening of just like, where does this come from? Why does it happen? Is it happening more or are we just getting better at diagnosing it and treating it? So do you think it's because women are taking Tylenol while they're pregnant? Yeah, that must be it. Let's start a conspiracy theory right here on this episode. Right. It does seem to have some genetic component, but it doesn't have it. That doesn't seem to be the answer. Yeah. But it's interesting because I think it's like that's like so many things where it's like, is this more is there like an uptick in this or is it an uptick in diagnosis? which I think is like a million things, including the abuse that we talk about in this show, right? Like where it's like if someone sees like a big like, oh, it's being diagnosed so much in this area, they'll be like, there must be something going on in that area. And you're like, the only thing going on in that area is detection. And we're looking at it. Yeah, we're overcoming all these barriers to detecting it that were there before. Exactly. And, you know, women have had period pain for all of history. So like, who knows? I run a small business and I have two small children. And that means that my husband and I are in a near constant state of decision fatigue. So the simple question of what should we make for dinners this week can lead to existential dread. Thank goodness for HelloFresh. All you have to do is go to HelloFresh.com and choose from more than 100 weekly recipes, and they will send you fresh, pre-portioned ingredients with a quick and easy recipe. But Andrea, you say you still have to make decisions. True, but they make it very easy and fun to choose your recipes, Whether you're looking for meat and potatoes, vegetarian, kid-friendly, diet-conscious, they've got it all. You get to skip going to the grocery store, and the ingredients that come in your box are the highest quality. Now they include three times the seafood for no upcharge. If you are a steak fanatic like my husband, you can check out their grass-fed steak ribeyes, and you're always going to get fresh seasonal produce like pears, apples, and asparagus. We have never gotten a meal from HelloFresh that wasn't a winner, and getting the box each week really takes something off our plates. Get it? Sorry. So go to HelloFresh.com slash nobody10fm to get 10 free meals and a free Zwilling knife, which is a $144 value on your third box. Offer valid while supplies last. Free meals applied as discount on first box. New subscribers only varies by plan. You can find all of that information at the link in our show notes. And remember that shopping our sponsors help support the show. 2026 is turning into my year of giving keynotes. So I'm going to be traveling around a lot, heading to Chicago, Florida, Nashville, San Diego, and who knows where else. So I decided it was time for a little luggage upgrade. So I went where I go for all my high quality essentials. Quince, of course. I'm always finding new categories of things to shop for on Quince, and they've added a lot of items to their travel section recently. My brown Italian leather hand-woven tote was a favorite purchase of last year. They also have these very cute quilted totes and duffels and their best-selling hard shell suitcases in carry-on and checked sizes. The set is only $229. True story, I was just perusing the site in order to write this ad copy, and on a whim, I ended up buying myself the leather jewelry travel case and the leather crossbody phone case and card holder in emerald green. This happens to me almost every time, and honestly, no regrets. So if you are on the go this year, I highly recommend checking out Quince's travel gear. As with everything from Quince, you will be getting the highest quality goods at half the cost because Quince works directly with safe ethical factories and cuts out the middleman. So right now, go to Quince.com slash Believe for free shipping and 365 day returns. That's a full year to wear it and love it. And you will. Now available in Canada, too. Don't keep settling for clothes and luggage that doesn't last. Go to quince.com slash believe for free shipping and 365 day returns. Quince.com slash believe. And remember that shopping our sponsors is a great way to support the show. So back to your story. So you were eventually referred out to a specialist endometriosis. Yes. So the AMA classifies two procedures for the treatment of endometriosis. One is ablation, where it burns the surfaces of the lesion. These are both laparoscopic surgeries. So they don't open you up. They go in little incisions. Now they use robotic tools, but it used to be different. So they can burn the surface of these lesions. And ablation is a procedure that can be done by basically like any gynecologist who is trained in laparoscopic surgery. It is not a very long surgery, so it can be done in like less than an hour. But it has been proven ineffective at treating the pain. Some people get a few months of relief and then the pain comes back. It also increases scar tissue and scar tissue creates what are called adhesions, which is basically scar tissue that glues your organs together. And that happens because endometriosis is not just a gynecological disorder. It is also an immunological disorder because our bodies see these cells that are where they shouldn't be. Sometimes they are bleeding when you are menstruating because they respond to hormones that tell your endometrium that's in the correct place to menstruate. They are also menstruating. And so that means there are there's stuff going on in your body that your body is like, that's not right. So it sends like a inflammatory response to try to deal with whatever's happening. It tries to cover it over with scar tissue and like block it off from the rest of the body. That scar tissue can then glue organs together and interfere with regular functioning. So one of the most common symptoms, something like 90% of people with endometriosis also have GI symptoms and may have gotten misdiagnosed with Crohn's or IBS because they are having such a hard time peeing. They're having pain when they're pooping. They're really constipated or they're having diarrhea or they're alternating depending on what's happening hormonally. So it's a lot going on and it's a lot that's being misinterpreted. And excision is the other kind of surgery where they go in the same way laparoscopically, but instead of burning off the surface of these lesions and creating more scar tissue, they actually cut out the lesions and they cut out as well any scar tissue that has formed around organs. And so that frees up the organs and lets them function like they want to. And it also removes the source of the inflammation. They can't always get all of it, but they can usually reduce it a lot. And that can still come back. So you can have excision surgery because endometriosis can grow like cancer. It can replicate itself. It can grow when something happens like an endometrioma bursts. And again, I'll say I'm not a doctor. This is not a medical opinion. This is what has been conveyed to me by doctors and specialists. So if I'm getting any of it wrong, don't sue me. but that is what has been communicated to me. So people do have excision surgery by top doctors and their pain does come back. So there is no cure. Excision surgery is like the gold standard of treatment, but the AMA considers excision and ablation to be basically the same thing. They share an insurance code. And so excision surgeons cannot bill for the actual procedure they're doing. They can only bill for like endometriosis surgery which is billed the same as like an ablation surgery that takes an hour and doesn't require a lot of training and doesn't help as much. The other tricky thing is that in order to get officially diagnosed with endometriosis, you have to have the surgery. They have to go in there and biopsy the tissue and then send it to a lab to confirm endometriosis. So it's a mess. Yeah, it's a mess that, again, speaks to why when people are narrating these experiences, perhaps less than faithfully, it doesn't necessarily present red flags to people because it just like it all tracks. Our health care system is a nightmare. Things like ICD codes can absolutely affect what care people can get as can, you know, socioeconomic status, gender, race, like all of these things, like just compounding factors. So, okay, so you went to see a specialist for endometriosis, and then what happens next? Yeah, so I went to see this specialist. I gave her the whole history. It was a very unique experience because the appointment was over an hour long. She went through my entire history. I had gone through and found all the scans and ultrasounds I'd ever gotten. I'd contacted previous doctors from 10 years ago and been like, send this scan to this doctor. and she went through every single piece of my history and explained a lot of things to me and essentially was like, yeah, you have endometriosis. Like, this is very obvious. And it also explained why the mild constipation I've had my entire life is probably caused by endometriosis. And not just, you know, my lower back pain is not because I'm a Libra. It's probably because I have an adhesion on the utero-sacral ligament, which attaches your uterus to your lower spine. And so that's probably pulling on the muscles of my lower back and the nerves around my spine. And that's why physical therapy never really helps this like low-grade, low-back pain I always have. So that made a lot of sense. I had been seeking answers to this mysterious pain that has affected my life so much for over two decades. And yet when I got the diagnosis and got back to my car, I cried because it didn't feel like a relief. What I was expecting was to get a diagnosis that would then have clear-cut solutions where it would be like, oh, this is what you have. Here's how we treat it. This won't be a problem anymore. And that is not how it goes for endometriosis. When you have endometriosis, you fight for years, sometimes decades. It takes, on average, seven to ten years for a symptomatic person seeking help to get diagnosed with endometriosis. And it took me over 20. So, again, very common experience. But even once you get a diagnosis, you get a protocol. Yes, they can sign you up for, they can, like, schedule you a surgery right away. but generally good surgeons, unless there's some like real function issues that are an emergency, generally they want to improve things as much as they can without surgery and then make a decision to do surgery. Because for some people, changing diet, going to a pelvic floor physical therapist, taking certain supplements, these can have a really big effect. And also what was explained to me is that over years and years and years of severe chronic pain, your body creates a lot of other problems around that pain. So things that can actually like make that pain worse. So things like your nervous system is in fight or flight all the time. You're just living in a constant state of survival, which means your body is not prioritizing digestion. Your body is not prioritizing regulation. And so there are a lot of things that they suggest, including meditation, which I had always been like, screw you. Meditating is not going to keep me from throwing up when I get my period. But after it was explained to me how the nervous system reacts to chronic pain, it was like, that does make sense. Okay. And I also saw a nutritionist got diagnosed with SIBO, which I had likely had my whole life because of the lower functioning of my intestines because of this nervous system issue. Sorry, what is SIBO? SIBO is small intestine bacterial overgrowth. So it happens whenever your digestion is slowed down or impacted by something. So food spends longer in your intestines than it is meant to. And the bacteria that are usually there and are supposed to be there overgrow. There's too many of them. They have too much food. And that causes bloating. that causes constipation or diarrhea. It also is when bacteria that are supposed to be in your large intestine end up coming into your small intestine because the food has been like sitting there too long. So the reason the food is sitting there too long can be because your nervous system is like upgraded too high. And so it's not prioritizing digestion. That's called gut motility. When that slows down, it causes all these other problems. it can be because adhesions have like pinned your intestine to your ribs. And so there's just a physical blockage. So things are slow moving through the intestines because of like a physical problem, a structural problem. So it can be because of a lot of things, but it's very hard to get diagnosed with. You have to like do a stool sample. Actually, you could do a breath test. I did a where you like breathe into a plastic bag at like different times in the day and then send it in and they like test the air for different like amounts of I don't know what but it came back very positive and addressing those things like kind of peeling back the layers did help a lot at the same time I my husband and I had made the decision to start trying to have a baby because after getting diagnosed with endometriosis endometriosis can cause infertility and is often like a secret culprit of infertility. So I was also 36. So I was like, we should, you know, if we're going to do this with this diagnosis, that like factors in, like, I don't want to leave it off too long. And we were not having success. So after trying for a little under a year and knowing that I had endometriosis, I went and saw a fertility specialist who ordered me a test that I didn't know existed called an HSG, which is where they squirt dye into your uterus and then they take x-rays as the dye moves and they're checking to see if the fallopian tubes are open because you want to see that dye just like go through the fallopian tubes and then like out into the peritoneal cavity that's what it's supposed to do so that you know the fallopian tubes are open so the egg can like travel from the ovary to the uterus. The sperm can easily, you know, all of that. And it turned out one of my fallopian tubes was very much blocked and dilated and filled with fluid, which usually happens because of scar tissue. So it's essentially like having a water balloon on a string attached to your uterus. And they were like, oh, yeah, that's probably caused by endometriosis. And that is probably the cause of your period pain. Because every time you get your period, and you're cramping a normal amount, that like tugs on this water balloon. And also, if there's a bunch of scar tissue, that might also be attached to other structures in there. So yeah, not great. So after finding that out, I made the decision to get excision surgery and was able to get that fairly quickly. The twist is, once they got in there, they excised, they removed the fallopian tube. They removed a lot of scar tissue that they found and potential lesions, and they sent those to the lab. When they came back, only one lesion out of seven samples was positive for endometriosis, which meant I did have endometriosis, but I was told that one spot of endometriosis was too far away from the fallopian tube to have caused the scarring that led to that fallopian tube being blocked. My question was, where did all that scarring come from What caused all that scarring And they said we don know and we probably never will So yeah a journey I have a lot of questions about sort of like what this personal experience has illuminated for you about the medical system And I think like there's a really interesting inherent tension because something I'm very aware of as I, you know, like interact with a lot of medical stuff. Right. That's what we talk about on the show. And I've talked to a lot of doctors and have, you know, looked at like the evolution of certain diagnoses and having to do with child abuse or just otherwise, you know, when we've been doing a deep dive on a condition that a child allegedly has. And, you know, one thing that I think is both amazing and can be very frustrating is that medicine is a constantly evolving field and we want it to keep evolving and hope that we can get back to a place where it will. But I think that that is under threat in this country, which is sort of another element to all of this, right? But like, it is a constantly evolving science. And so there's like a real tension between we are gonna have situations where things are unknowable. And also, there are people who have been systemically disregarded by the system. And so it's like, well, if this was happening to another group, would it have remained a mystery for so long? And it is, it's very alarming to be told, you know, I had like, unfortunately he was, he's perfect. There was no real issues, but like, I had like a weird test early in my second pregnancy and they were like, well, this can happen because of this reason, which does not describe you. It can happen because of a chromosomal disorder that is incompatible with life that we will now test for. Or it can happen for question mark nobody knows. And it turned out it was the question mark nobody knows. And now, you know, that's like that's obviously a thing where you're just like, well, you know, like this is pretty advanced testing. This is understandable that people don't know that. But that's a really scary thing to be given. Like, well, just happened sometimes, which sounds like was ultimately the answer for you. And that causes sort of two things. I think that causes obviously distress for people who are legitimately seeking care. It also unfortunately creates an opening for people that are abusing the system. And I wonder, like, from your perspective, like, I have this sense that I can't quite articulate of, like, how both of these problems are intertwined and how there's probably parallel solutions to making them better. And I wonder kind of like what your perspective is on that. I think there are so many parallels. So much of what perpetrators are doing is what we call doctor shopping, right? Is like going from doctor to doctor to get a very specific outcome that they want, a diagnosis, a treatment, but they don't need it. Their child doesn't need it. They just want it. So often people in my position have to do the exact same thing for a legitimate problem they have. If you are in pain once a month and your life gets thrown in upside down once a month from your period pain and you're not getting help from your doctor, you are going to do your own research. You're going to talk to other people about it. You're going to hear what diagnoses other people have gotten in similar situations. You are going to go to a new doctor and be like, hey, I heard about this thing. It seems like I fit those criteria. Can we test for that? Can we what do we do about that? Can I pursue this? And they are dismissed, not listened to often. I also want to be very clear, like, I've had some really good doctors and especially in this process, like, and I've talked to some really amazing scientists doing amazing research. So when I speak in generalizations, I am speaking of like the majority of the experiences that I hear people have when they are seeking help go like this, you know, that they have done their own research. They end up going to the doctor knowing more about a condition than the doctor does sometimes and trying to get a diagnosis or trying to rule something out and being told, no, I don't think you have that. A lot of people with endometriosis are when they inquire about it. I actually was told this as well when I asked the doctor about endometriosis. I was told it can't be endometriosis because it's not getting progressively worse. It's staying the same. And so it's not endometriosis. I was told I was too young to have endometriosis. I was told so many things that once I did more research, I was like, oh, that's just wrong. That's just incorrect. And that's just misinformation that they have that they got in school or they heard from a doctor friend of theirs. Or like, it's just wrong. And so in that way, you do have to kind of ignore what your doctor is saying and go seek help from a doctor. You have to go doctor shopping until you find someone who will actually help you, who will actually give you information, who will research it themselves and get correct answers. And so it's the same process, but it's a legitimate search for answers and relief. We get asked about that disparity a lot. Like what is someone seeking, you know, going through this process that many people do have to go through? And what is doctor shopping in the Munchausen or Munchausen by proxy context? And what I always like to point out to people is that the differing element is deception, right? Like you are going to a doctor and saying, well, I'm having these symptoms and you are really having those symptoms. And people who were around you a lot would have seen you having those symptoms. Same thing like if someone has a child, right, who they're saying. And again, it's really interesting because it's like everything you mentioned. I sort of think about this immediate parallel, right? We've heard about gut motility issues. We've heard about, you know, pain disorders and bringing in patient advocates and unfortunately, an extremely sinister context. And like all of these things we've heard about, you know, going to doctor after doctor after doctor. And what we find is, yes, the very surface looks the same. You peel back one layer, it looks completely different because frequently, like I think about the Kowalski case, which is, you know, that I've been following for two years. And this was a lot of people who had a sort of knee jerk reaction to the emotional story that they were being told and sympathized with Beata Kowalski and said, well, you know, like the doctors are, you know, don't listen to women. And she had a foreign accent and like these things that are very real phenomenons. But again, you peel back one layer. She wasn't being told that they didn't know what was wrong with her daughter. That's what they said later. But come to find out, she'd been to three world-class hospitals who had all said, your child has a conversion disorder. Here is the treatment. And she said, no, that's not the diagnosis I want. She told doctors before she got any diagnosis that her child had CRPS. And then she finally found a doctor who has a cash ketamine clinic in Florida and has vanity license plates that read CRPS, who likes that diagnosis a lot and appears to give it out pretty indiscriminately and gave this diagnosis to a child that didn't match any of the criteria. So it's like the deception is the thing. The deception is the whole thing in this abuse. Right. But the parallel is so because in both cases, women are trying to get a need met, right? In like my case, my need is to accurately diagnose me and treat me so that I don't have period pain anymore. In the case of a perpetrator, the need is very different, but it looks the same. They are going through the same steps to the need is, I mean, if we knew that we could. Well, I mean, we do know the need is, you know, the person needs control. They are looking to fill an emotional need of theirs and the need for sympathy and attention and to be seen as heroic. And they are using their child to do that. And they're using the health care system to do that. Right. I mean, doctors are also victimized in this situation because they're unwittingly being used to torture a child, which is obviously, you know, quite traumatic for them as well. And I think if we were able to recognize both of those things, like I sort of think there's a crossover here on the Venn diagram of not recognizing women's pain and not recognizing that women can be abusers are like in the same little Venn diagram crossover of just like not recognizing women as human beings. Exactly. Who deserve better quality of life and have the ability to torture children. Correct. And that both things are true. Yeah. And like my sort of grand working theory at this point on why, you know, this is a very most abusers in this for this form of abuse are women. Right. It's something like 96, 97 percent. And I think that's not because there's something wonky with the female brain or, you know, I don't think it's uterus related. I think it's because abusers abuse power where they're given power. And one of the only places we give women power is over children. and that there is a very strong social component to the idea of playing this ultimate sympathetic figure of a mother with a sick child or you know in the in the really you know tragic end game of this a mother with a child who's died and like I sort of think like one sort of possible like just blanket like if we were always more aware of women's humanity and the full scope of their humanity as we are talking to them in doctor's offices that actually both of these things would be like not fixed but like that this would go some distance to fixing right because i think there are these elements that like on both sides like i think what's something that you know we talk a lot about like and i think this is something everyone experiences at the doctor right that you have to trust your doctor and that we place a great deal of trust in our doctors and in our children's doctors. I mean, there's just extra level of vulnerability there. Right. And like, you really, really want to believe that you're, you know, and I think the vast majority of doctors do really care about because it's a caring profession. This is not, you know, like most people who go into it, like care about people. And certainly like most pediatric doctors, again, like are there because they love children. A lot of these subspecialties are not, you know, extraordinarily well paid. You know, unfortunately, the bad doctors do sometimes make a lot more money at this, which is a whole other sort of element. But, you know, the scammy doctors and the kind of all that that's that's really flourishing right now. But I think there is this element of like the profound need for trust on both sides. We think a lot about how we need to trust doctors. And I think the reality is they also need to be able to trust us. And that is just something that doctors are not prepared for in medical school. You know, you kind of talk about like, here's this thing that affects one in 10 gynecological patients that doctors are like, hey, it's a thing, but like, don't worry about it, you know? And it's like, right. We are also, yeah, ultimately doctors are victimized by the lack of research and quality information around women's health care. Yeah. They're not being equipped to care for their patients. Yeah. Yeah. And I also have, like, I think people who experience severe period pain get very angry at doctors, which is fair, but also like they are also under-resourced. And they can be dicks about it. They can be real assholes sometimes about dismissing concerns. And that's a bad doctor if you are bringing your pain to a doctor and they are saying like, it's nothing, don't worry about it, Like, relax. Like, that's a bad doctor. But if you are bringing your pain to a doctor and they have incorrect information or they don't have information and they do their best to help you, like, that's not a bad doctor. That's a bad system that the doctor is doing their best in. 2026 is turning into my year of giving keynotes so i'm going to be traveling around a lot heading to chicago florida nashville san diego and who knows where else so i decided it was time for a little luggage upgrade so i went where i go for all my high quality essentials quince of course i'm always finding new categories of things to shop for on quince and they've added a lot of items to their travel section recently my brown italian leather hand woven tote was a favorite purchase of last year. They also have these very cute quilted totes and duffels and their best selling hard shell suitcases in carry on and checked sizes. The set is only $229. True story, I was just perusing the site in order to write this ad copy. And on a whim, I ended up buying myself the leather jewelry travel case and the leather crossbody phone case and card holder in emerald green. This happens to me almost every time and honestly, no regrets. So if you are on the go this year, I highly recommend checking out Quince's travel gear. As with everything from Quince, you will be getting the highest quality goods at half the cost because Quince works directly with safe ethical factories and cuts out the middleman. So right now, go to quince.com slash believe for free shipping and 365 day returns. That's a full year to wear it and love it. And you will. Now available in Canada too. Don't keep settling for clothes and luggage that doesn't last. Go to quince.com slash believe for free shipping and 365 day returns. quince.com slash believe. And remember that shopping our sponsors is a great way to support the show. I have lost so much trust through this process in doctors. Or I guess I have trust in my doctors at this point. And I have vetted them very thoroughly. And I have like, when I get a new doctor, I ask them a bunch of questions. I ask them what they know about endometriosis and women's health care. I ask if they agree with certain statements because I am not going to see a doctor who doesn't agree with some of these statements. Like I have to do virtual appointments with a doctor to like renew a prescription or something. And I did one once with this where I was like, I'm getting surgery in like two weeks for endometriosis. I just like mentioned this. I was like, that's why I need this prescription just like filled now. And he was he tried to tell me something about endometriosis. And I was like, no, thank you. Like, I'm good. Like, I think there is this like, yes, we have to trust our doctors, but we also have to remember that they're only human. They are not gods. They are not all knowing. Just because a doctor tells you something doesn't mean it's correct. Doesn't mean it's true. Doesn't mean it's true for you. And so ultimately, like, for better or for worse, like, I'm not saying this is the way it should be. I'm saying in the current system that we live in, women have to take responsibility for their own health care and their own information. Like, we have to do so much research because there is so much bad information and so little information out there about some of the things that we might be dealing with. and we are so vulnerable to being dismissed, to being sold something that is not going to help us, to being misdiagnosed, the buck has to stop with us. And we have to make decisions that are in our own best interest. We can't offload that responsibility to anyone else, even a doctor. Yeah. And I think you've just said something that in this context is very accurate and also you know, four words that have become some of the most, you know, one of the most terrifying phrases, do your own research. Because as this is all going on, as these problems that have been with us since like, and I'm, these are off the top of my head, but like, they didn't sort of really even like study the female body until like the 1970s and women weren't included in clinical trials until like the 1990s or something like preposterous, like during our lifetimes, right? And like, it is, it is actually hilarious. I mean, just having a female body at all, but like going through pregnancy, especially you're just like, yeah. Okay. So you're telling me doctors throughout time up until five minutes ago, we're like, Hey, a body that can like make and birth a human being is like pretty much the same as one that can't, you're like, this is the same. It's just smaller. Like, because as you were pointing to, right, like childbirth, it's like, it changes. Because everything, it affects everything. You're like, oh, nobody sort of prepares you for like, oh, no, it's not just like your stomach's going to look different and things are going to be like your bones, your hair, your skin, you know, it really hits you how preposterous it is. But I think like, you know, so it's like that, right? Those problems have been with us for it since forever. And now we have like, as I would say, sort of the RFK junior of it all, which is that we have like medical misinformer in chief, you know, and like just this absolute proliferation of garbage. And so you have sort of these reasons for mistrusting the medical system that are quite legitimate. Right. And especially I think then, you know, you compound that with people who are gender nonconforming, people who are not white, you know, like and then it's just like and, and, and, and, and, and. And then you have the illegitimate medical mistrust. Yeah. But that might actually be creating mistrust in people. But for reasons, it's like it's like the last thing we need is more reasons to mistrust the medical system. and like the reason to mistrust the medical system is not you know oh they've been lying to you about the efficacy of the polio vaccine or whatever it's just such a mess and then like all of these things again in our context perpetrators can just have a field day because it's like now there's all of these groups that are sort of dedicated to these diseases that are not real and it just i mean it's sort of like it's a real mushroom cloud yes and i see this so much in the conversation about birth control, where for decades, we've been basically, if you go to a gynecologist and you say, hey, I'm having trouble with my period, the first thing they do is throw birth control at you, if you're not already young. Yeah, I mean, that was why I went on birth control when I was a teenager. Yes. I mean, yeah, which I think is really common, right? Yeah. And so we have a lot of people who have been put on birth control by their doctors who they trusted when they were very young and they are in their 30s and their 40s coming off birth control being like, what is happening to me? Like, what is going on? We are not educated about how birth control actually works. Birth control is hormone replacement therapy. Like birth control is gender affirming care first of all but it also like sidelines our natural hormone cycles and replaces them with synthetic hormones And so like our bodies are not actually like doing our normal hormone cycles which can bring people a lot of relief from pain that is caused or contributed to by these hormone fluctuations So it's a great tool. It's so important that we have the ability to control our fertility. Like that's huge. But also like doctors are over prescribing birth control. Partly, I think, because by sidelining our female hormone cycles, it is masculinizing our hormone cycles, basically. It is bringing our female bodies closer to the functionality of a male body, which is what medicine knows how to do better. And so I suspect that that is the underlying reason why birth control is sort of thrown at everybody. There is now this very Maha-centered pushback to birth control of saying nobody should be on birth control. Birth control is masculinizing. Birth control takes away your sacred femininity. Actually, you should be using cycle tracking in order to control your fertility. That's the only acceptable way to do it. And it's like, oh my god, I actually agree with some of the things that you're saying, But like it's going too far in the other direction. And it's like we need to be able to exist in the middle ground where birth control is a great, important, like revolutionary thing to exist. And we can't be putting people on it who don't understand how it affects their body, can't give informed consent. There's not a lot of research about what putting someone on hormones before their brains and their hormonal systems are fully developed actually does. how it affects them long term. It's a mixed bag. And we don't we aren't informed. And then you sort of think about how this crosses over with like the increase to restrictions on reproductive care overall. And you're just like, I don't know what it is about this moment where our relationship to medicine has become an unhinged fury that it doesn't have all the answers. Because we are not going to have all the answers in my lifetime, your lifetime, the next lifetime, and the next lifetime. And that doesn't mean that groups and conditions that have been unfairly excluded shouldn't be given more focus. From where I'm coming from, here's my flag in the ground. I think the answer here is more science, more medicine, more funding, more communication, not less science, worse communication. And, you know, it's just like when you have the top dog being a person who does not believe in germ theory, it just feels like we're heading in the wrong direction with that one. You know, it's like, let's not let's let's move science forward, not go back. Yeah, it's frustrating. A hundred percent. I think that this is happening. I think this this backtracking this I think all of this had room because we started becoming more aware, especially women, especially people of color, especially people who are underserved and badly served sometimes often by the medical system, there has been an increase in awareness of how badly the systems have been working for us and how hypocritical the systems are, that we are told to trust these systems, that we are told this is an authority who gets to tell you what to do with your body, who gets to give you advice that you just follow. And if you don't follow it, it's your fault that something bad happened to you, that they didn't have all the information, but we were told they did, that we are suddenly realizing, wait, you didn't study, you didn't test or develop this medicine with any female cells, any female animals, any female test subjects, or very, very few. And you're just putting me on this medication and ignoring me when I say I'm having a bad reaction to it. Like, that's not cool. Like we're that there is legitimate pushback and and calls for change that then get co-opted, that then gets taken way too far and taken advantage of. Yeah, it's kind of like you get to like a fork in the road. And it's like some of us, if we just take, you know, sort of women as a group, we're like the medical system has ignored us. And you're like, yeah. And then it's like we need them to pay attention to us. Yeah. And then like one group is like more research, more funding for research and then and better communication. And the other one's like, what about raw milk and no vaccines? And you're like, wait, like, you know, and, you know, I want to say that, like, especially I want to like put a big sort of, caveat on this conversation, which is that like, I think we do have to make space for people's legitimate and very understandable distrust of the medical system. And even down to like, you know, the way that things were communicated about COVID. Historically, many of these populations have been treated by the medical system or not treated by the medical system. Or, you know, if you think about like the history of Black folks in this country with the medical system could not be more of a horror movie, right? From the Tuskegee Medical Experiment, where they intentionally didn't treat people with syphilis so that they could study them. I mean, the entire history of gynecology was, you know, started with non-consenting experiments on Black women. I mean, just like there are so many deep, deep reasons for mistrust there. And we're sort of stuck with each other. You know what I mean? Like all of us in the medical system, like you can't forego the medical system and we can't halt science because of its bad track record. So it's like, we're not going to solve all this today. I don't know. We got 15 minutes. Let's go. Let's try. But I think you and I were in a unique role that is like an important role and potentially like a powerful one here. So maybe we can just figure out what we should be doing. I think a lot about science communication. And there's a way that doctors talk about things. And it's different than the way that like a prosecutor for a crime talks about things or detective talks about things. It's different than the way a journalist who covers crime talks about things. It's different than like the way that like regular schmegular people talk about things. And like all of these things, like there is just a piece of this that's like science communication. And I think about myself, you know, I'm not a doctor. I'm not a scientist. I am a subject matter expert on this abuse. But my biggest role is being a communicator and a storyteller. Right. And that's very analogous to the role that you play. You are very knowledgeable about these things. I think you could fairly say you've become a subject matter expert on it. But like your role is to be Kate, your friend telling you about it. Whereas I think like that's kind of our role as podcasters. Yeah. Like, how do you see your role in helping move this conversation forward? And like, what do you want to accomplish with your specific project? I mean, that's such a good question. And it's something I've been wrestling with a lot, because my project, Cramped, I initially got a grant from a science organization to do a limited series, 10 episodes. I produced those 10 episodes as like, and each of the 10 episodes answers a question that I have had or attempts to answer a question that I've had about my pain by doing research, reading medical papers, going and talking to experts and asking them my questions. And the whole format of those 10 episodes is I'm a regular degular person. I have questions come with me while I try to get these questions answered. But like, I'm not an expert. I have personal experience with this problem. But like, I am just trying to understand my own personal experience and pain and get answers and solutions. And also understand, like, how did this happen? How did we end up in a place where I had 22 years of undiagnosed and untreated pain in 2025? You know, like, and then the response from those 10 episodes was so huge. And we got so many comments and messages of people saying this was exactly their experience. This was exactly what they had been looking for in terms of information. that medical students who were like, I learned more about women's health listening to this podcast than I ever learned in medical school. I had more than one person reach out to me to say, I had an ablation surgery scheduled and I canceled it after hearing your endometriosis surgeon explain why ablation surgery was the wrong surgery to get for endometriosis. And it was like, oh, that's maybe too much responsibility for me. But like, but it just that there isn't anywhere else people are getting this information or it's very hard to access to find your way to this information because it's not talked about publicly. These situations are kind of kept under wraps. This pain is not advertised. This pain is something that people most of the time deal with silently and alone. And so after those initial 10 episodes, we made the decision to keep making the podcast, even though we were out of funding. and it was going to be like all of a sudden like a scrappy completely like start from scratch um not get paid like try to figure out a system for this yes relatable and we did it yeah yeah not there anymore but yes we went through that period as well yeah yes well it gives me hope that you got that you found your way it started out as a limited series is like that it's a three hour tour of podcasting right where you're like oh we're gonna go on this journey and we think it's going to be this one thing. And then it turns into this entire other thing. Oh my God. Yeah. And, and so since the, those initial 10 episodes and I like my story is resolved, like I got a diagnosis, I got answers, I got surgery. I no longer have period pain or severe period pain. I still get cramps, but I'm okay. And I wouldn't be okay if I hadn't done this project, which is crazy. But I've been asking myself a lot of like, what is the role of this podcast now? What is my role. I'm not an expert. I'm now, you know, I'm not a doctor. I'm not a scientist. I now have a lot of knowledge that I've gotten from doctors and scientists about this subject. But mostly what I see my role as is uplifting other people's stories. So I've had a lot of people on to tell their stories of period pain, how they've been seeking answers, what answers they've found, what treatments they've found. And I also see my role as pulling the veil back on women's health care of not to say like, it's all bad and nobody should be doing it. But just like, here's how we got to a place where your pain can be so easily ignored. We assume that the same amount of research has been done on our bodies as other people's bodies. And it's not true. And you need to know that in order to successfully advocate for yourself. Also, that we need to normalize talking about our problems more, that we should not submit to the shame of hiding our pain, dealing with our pain entirely alone to what? Save other people the discomfort of hearing about your period pain? Like, screw that. Sorry. They can be uncomfortable. You're in severe pain. Yeah. Also, like, I would say to anybody that finds things having to do with periods or pregnancy or childbirth gross, how exactly do you think you got here? Yeah, grow up. Some woman went through all that for you so that you could enter the world. So grow up. Yes, grow up. Yeah. The fact that that that's not the base that it's like, hey, life doesn't exist if like periods and pregnancy and like women's health doesn't go well. So maybe we should actually be talking about that more than other things, more than male pattern baldness. Yes. Or like erectile dysfunction, you know? Yeah. I think my last question for you is and then my well, my penultimate question for you. So, you know, I've had very similar experience to what you described and sort of how people have told me that they use the show and how it's been this active part of their learning. And we have a lot of doctors that listen to the show and a lot of child welfare folks. And I think that's wonderful. And it is a big responsibility to carry. And it's also like I think it's a part of the solution. And again, it's also a part of the problem, because how do you delineate someone who is doing their due diligence? I think there are these other, you know, like maintenance phase is another one. Right. which is like a fantastic health and science podcast. Aubrey Gordon has my heart. Oh, me too. Me too. And Michael Hobbs as well. And you know, like, yes, they're not doctors, but they do this incredible amount of research and they really pack, but they package it in a like very relatable way. And I think like the thing about information is if you can't get people to listen to it, then it is moot. We are creating ultimately what we hope is a very, very informative, but also has to be this like sort of engaging project. And I wonder like for listeners that are like, okay, we are in a scenario where you are going to have to seek out information. What is your advice on how to make sure you're getting good information and not falling down a drink carrot juice instead of using sunscreen type influencer rabbit hole? And I don't want to say influencer in a demeaning way, because I think like there are so many content creators that are putting out just incredible information, including good sort of science and health communication. Like, how do you make sure you sort of stay on track, even if you're outside of just speaking directly to doctors? It's such a good question. And if there was an easy answer, I think we wouldn't have this problem. I think there are a lot of approaches that can be really helpful. I think listening to your instinct and the way that like if a doctor is telling you something and you're like, I don't think that's right. Listen to that. Fact check it. But don't ignore that and do something just because anyone tells you. And that's true outside of medical context. If you are feeling like something is wrong, don't automatically do what that person is telling you to do. I actually have a whole episode of Cramps, episode five, about hormones and how easily we get taken in by grifters and influencers who are trying to sell us things because we know something is wrong and our doctors are telling us everything is normal. And so what are we supposed to do? And there are these people who are saying, I see you. I hear you. You know something's wrong. I have the solution. I think anyone who is telling you they have the solution, especially if they're trying to sell you anything, if you're watching a TikTok and there's that like little thing you can click to buy it, that's garbage. You can't take any of that information seriously because that is an advertisement for a product. I think there are a lot of people out there who have good information. They can be really hard to find. I hate to say do your own research. Here's something that I have found really useful and a way to don't ask chat GPT. questions about medical stuff. Don't do it. What AI can be really useful for is there's an AI tool called Google Notebook LM that you feed it things. So I will be researching a topic like ovarian cysts. I will find 10 medical papers on ovarian cysts. I will feed it into Google Notebook LM and then I will ask it questions and it will only give me answers based on the things that I have fed it. It's a closed system. That's how I use it too. Yeah. That is helpful. Yeah. We have these tools that we've never had before that can help us take care of ourselves better, but you cannot offload your critical thinking. Nobody else can make decisions for you. Nobody else, let alone an AI, can really tell you what information is accurate. Like you do have to, We're kind of all in it together here. Yeah. Well, and I like that you brought up, yes, be very suspicious of profit motive, right? Yeah. And to me, like a big other thing is like, understand the difference between sponsored studies and peer reviewed literature, right? The way we have to be media literate enough to understand if what we're seeing has been made by AI and is fake, you know, the way we have to be media literate enough to like clock a paid article that is essentially an ad or like, we have to know these things because it's the world we're living in. And those are existential threats to us or can be. And so we have to do the same thing with medical information. Yeah. Well, I mean, I really could talk to you for like another two hours, but I do have a couple of book recommendations for anyone interested in learning more about the history of women's health care and how we got to this place in how we got to such a messed up spot. One is For Her Own Good by Barbara Ehrenreich and Deirdre English. It's a really good comprehensive history of women's health care. The subtitle is A Collection of Experts Advice to Women. So it's really good information. And you have to take rage breaks when you are reading it because you are going to learn so many things that make you so angry and punch a pillow, it's okay. The other one is Invisible Women by Caroline Criado Perez. It really illuminates as to how data on women is left out of almost everything. From like seatbelts in cars, the first female crash test dummy that was made to female weight specifications and proportions was just used in the last like five years. Perfect. That is part of why women are more likely to die in car accidents is because literally the world we live in was not made for us. And then there's a whole section on medical data and how why women die so much more frequently from heart attacks than men is because we present differently. But the way heart attacks present in women is not taught in medical school. So it gets missed. Women get sent home while having an active heart attack and can die. So like those are two books that if you're interested in becoming very angry, but also understanding how we got to this place, you will get a lot of illuminating information from those books. Wow. Well, maybe I might recruit you to come back for a little book club episode because that sounds great. Yeah. Well, thank you again, Kate, so much for doing this with us. Everybody, please go listen to your show, Cramped. Where can people find you? So literally anywhere you get your podcasts, it's cramped, C-R-A-M-P-E-D. It's a purple icon. I suggest you go back and listen to season one before going on to what I'm calling season 1.5, which is like our always on episodes. You can also find me on Instagram at Kate Helen Downey or on TikTok at Kate is cramped. Fantastic. Well, again, thank you so much for joining us and we will keep in touch. Great. Thank you so much for having me. Nobody Should Believe Me is produced and hosted by me, Andrea Dunlop. Our editor is Greta Stromquist and our senior producer is Mariah Gossett. Administrative support from Nola Karmouche. Thank you.