Not on the Table: The Science Behind Period Cramps and What’s Still Missing

Kate Downey shares her 22-year journey through debilitating period pain and her quest for answers that ultimately led to creating her podcast "Cramped." Through extensive research and interviews with experts, Kate uncovers why period pain remains so misunderstood despite affecting hundreds of millions of people worldwide.

• 30% of menstruating people (approximately 522 million worldwide) experience debilitating period pain
• The widely accepted explanation for period cramps is being questioned by researchers at the GYRL lab
• Female bodies are systematically excluded from medical research, leading to gaps in treatment effectiveness
• Even medications like antidepressants work differently depending on where you are in your menstrual cycle
• The stigma around periods keeps us isolated in our pain, which neurologically can make the pain worse
• Women's health research is making progress, but requires more advocacy and awareness
• Creating community through "women's circles" or "clam bakes" helps share crucial information about treatments
• Resources like cureperiodpain.org offer opportunities to participate in studies that advance menstrual research

You can find Kate Helen Downey's podcast "Cramped" wherever you listen to podcasts, and follow her on Instagram @KateHelenDowney or TikTok @KateIsCramped.

Chapters

• 0:00 Kate's Painful Period Journey
• 7:14 The Medical Mystery of Period Pain
• 16:28 The Reality of Menstrual Stigma
• 23:00 Why Period Science is Shockingly Limited
• 32:36 The Gender Bias in Medical Research
• 40:30 Hope on the Horizon for Menstrual Health

Transcript

Speaker 1: 0:00

Have you ever wondered why period cramps happen or why we know so little about them? Or maybe you felt like you couldn't talk about periods but weren't sure why. In this episode, I'm joined by Kate Downey, the creator of the podcast Cramped, who dives deep into the science, the silence and the stigma surrounding period pain. She shares what she's learned, what shocked her and why this conversation matters. You won't wanna miss this, so stick around. Welcome to EndoBattery, where I share my journey with endometriosis and chronic illness, while learning and growing along the way. This podcast is not a substitute for medical advice, but a supportive space to provide community and valuable information, so you never have to face this journey alone. We embrace a range of perspectives that may not always align with our own, believing that open dialogue helps us grow and gain new tools. Join me as I share stories of strength, resilience and hope, from personal experiences to expert insights. I'm your host, alana, and this is IndoBattery charging our lives when endometriosis drains us. Welcome back to EndoBattery.

Speaker 1: 1:13

Grab your cup of coffee or your cup of tea and join me at the table Today. I am joined by my guest, kate Downey, who is a storyteller, podcast powerhouse and the creative mind behind Cramped, a podcast investigating why period pain is so misunderstood and mistreated. She has produced hit shows for Wondery, built live podcast events with names like Malcolm Goodwill and co-founded Caveat NYC, where she made science and history hilarious and human. Kate has a knack for making boring things fascinating and today she's here to talk about how she combined her skillset and her story with the curiosity surrounding periods. Please help me in welcoming Kate Helen Downey to the table. Thank you, kate, so much for joining me today on this podcast. It is such an honor to have you sit down with me and go over all the things that you're doing. Thank you so much.

Speaker 2: 2:04

Thank you so much for having me. I'm so excited to be here, of course.

Speaker 1: 2:08

Now, this is something that I'm excited to talk about, because you have a podcast which I think is phenomenal. It's called Cramped, but you didn't start this overnight and for no reason Can you tell us how this all came to be and the process it took you to get to this point to want to do a podcast like cramped.

Speaker 2: 2:28

Yeah, I mean the long story is 22 years ago, when I was 14, I got my first period and then I got my second or third period and it was horrifically painful. I was in science class, I think in eighth grade, and started a full body sweat. I thought maybe like I had a stomach bug or food poisoning. I asked to be excused to go to the bathroom and realized I couldn't stand all the way up, that my whole midsection was just completely clenched down and like twisted. I tried to get to the bathroom and had to keep stopping in the halls with my hand against the locker like trying to catch my breath, trying to stand up Didn't think I was going to make it Suddenly realized like how far it actually is to the bathroom, started thinking like am I going to throw up in the middle of the hallway? Like this is horrible.

Speaker 2: 3:20

So after I went to the bathroom and threw up, I went to the nurse's office and I was convinced I was having like that my appendix had burst, because I couldn't imagine what else could possibly hurt this much. Like I was a pretty healthy kid. You know this was me at 14. I had never experienced pain like this before, pain like this before. And so in my fantasy, as I'm dragging myself down the school halls, I'm like this is what a medical emergency is. This is what they talk about, this is what they describe, this is what you see on TV. I'm going to get to the nurse's office. She's going to immediately see how bad it is. She's going to call an ambulance. They're going to take me to the hospital and do emergency surgery. And then I'm going to wake up and a doctor is going to explain to me like what crazy thing went wrong inside of my body to cause this much pain.

Speaker 2: 4:12

I was like I just have to get to the nurse's office. I just have to get to the nurse's office. And when I got there, she asked me if I she knows. She asked me what was wrong. It was like oh, I've thrown up a couple of times. It hurts so much.

Speaker 2: 4:23

You know was describing what was going on was still sweating, full body sweat couldn't stand up straight. She goes oh, do you have your period? I was like, yeah, but kind of like what does that have to do with anything? And she was like oh well, here's a hot water bottle. You know you can lie on the cot for a little while, but like you do have to go back to class eventually and I was like hold on, there must be some misunderstanding. Like are you? Like? No, call an ambulance.

Speaker 2: 4:53

And so instead I just I lay on this cot with a hot water bottle and got up every 10 minutes to throw up in her bathroom until she finally called my mom and was like, yeah, I guess you're not going back to class. She called my parents. My mom came to get me. She was very concerned because my mom had never had these kinds of cramps before, so she did what she could for me. After we got home, I kind of passed out from the pain and when I woke up the cramps were gone. My mom took me to the gynecologist like a week later and the gynecologist explained to me that some women just have very bad cramps and it would probably get better when I had my first baby, which is something that is not super helpful to say to a 14-year-old.

Speaker 1: 5:32

Yeah, and that's like the last thing you want to hear when you're 14.

Speaker 2: 5:36

Right. And so the rest of my adult life, the rest of my menstruating life, up until last year, I went to doctor after doctor. I switched insurances a lot in my 20s. I went to doctors in rural Maine, I went to doctors in Boston, where I went to college. I went to doctors in New York, where I lived for almost a decade, and I went to doctors in LA where I moved about five years ago, and no doctor could give me no gynecologist. Nobody could give me an explanation of what was happening.

Speaker 2: 6:06

When my periods hurt that bad, when my cramps got so bad that I was throwing up, I ended up in emergency rooms with doctors who tried to give me IV anti-nauseas. That did not work, even when I would explain to them. I have horrible cramps. This is what happens when my cramps get really bad. They did not believe me. I did my own research, brought my research to the doctors that I was seeing, said hey, could it be endo? Could it be adenomyosis? Could it be PCOS? Could it be all these things? And every time I was told no, it couldn't be that, because blank. No, it couldn't be that. It couldn't be endometriosis, because otherwise you'd have very heavy periods and I have very light periods. And no, it can't be endometriosis, because otherwise, because if it was, that you would be having pain throughout your cycle, not just during your period. Nope, turns out it can totally just be on your period, anyway, and so on and so forth. And so it meant that I got to the age of 36 with no diagnosis, no effective treatment, and I kind of got sick of it.

Speaker 2: 7:05

I ended up, in the course of my weird meandering career, I became a podcast producer and so I decided this is something I want to do a podcast about. I want to find out for once and for all what is wrong with me, why I've been in unexplained and untreated pain for 22 years. That, after talking to people about it, like as I got older, I realized is actually not uncommon. It's very common to be having extreme, debilitating pain during your period. And yet why did every doctor look at me like I was some medical mystery? So that kind of cognitive dissonance always interested me and always made me really want to like, dig into that, like what could possibly be going on Right.

Speaker 2: 7:53

Plus, I wanted a diagnosis and treatment Right, and so I got a grant from the Simons Foundation in New York City and I was able to make 10 episodes of a series called Cramped where I dug into all of my questions. That seemed like really basic questions and, of course, once you start digging into them, it turns out they're not so basic. Questions like, hey, why do cramps hurt? Like what is actually cramping, what is actually hurting. They seem really basic, seem like there'd be simple answers. There aren't.

Speaker 2: 8:26

Questions like why don't doctors know what I'm talking about when I bring them my symptoms? Seems like there should be an easy answer for that. Seems like it should be simple. It's not. It turns out there's a deep history. So that's really what I went into it trying to find out. That was about a year ago. I started working on it. Over the course of the year I went to see some specialists, which were expensive, but I decided to invest in that finally and I got diagnosed with endometriosis as part of my constellation of diagnoses, because I feel like, as endometriosis is becoming more prevalent in conversation, it still seems to be largely ignored in the medical system when it comes to general GYN or family care.

Speaker 1: 9:25

And again, this is much, much deeper than I think any of us really understood when we first started exploring this. But what's interesting about you is that you even mentioned like my periods aren't heavy, but I'm in so much pain. But the curiosity stopped at that point, it sounds like, and that's where your curiosity took you to where you are now with your podcast and what you're doing and discovering about periods and discovering about women's health and menstrual health and all of those things that we deal with day in and day out, but no one's talking about it. And then all the nuances to the period why are they painful? Why aren't we talking about these? Pain is one thing and discomfort's another. How do we differentiate that?

Speaker 1: 10:07

And so I feel like this podcast has been so needed. So thank you for doing it and exploring that. I encourage everyone to listen to it because it's incredible and you do an amazing job at it. But I think what it highlights more is that there's different facets of your period. What is one thing from your podcast that you have learned that just kind of blew your mind? I'm sure there's a lot, but what is maybe one or two things that you have taken away from having your podcast. That just was like. I never even would have thought of that.

Speaker 2: 10:41

Oh, yeah, okay. So there's two things that come to mind immediately that, for me, just blew my mind right away. One was in trying to answer the question what is actually hurting when I have cramps, what are the mechanics of this pain, and why do sometimes I get quote unquote regular cramps that are like unpleasant, uncomfortable but not debilitating, and then sometimes I get what I call death cramps, which are excruciating, debilitating, they make me throw up, they make me pass out, and so what? Is something different actually physically happening, or is it just regular cramps, like turned up to a 15? You know, I had this question. Doctors couldn't answer it for me, so I went to a lab in Evanston, illinois called the GYRL lab, the gynecological research lab, and they are specifically studying dysmenorrhea, which is the medical term for severe period pain, and they're doing things that I thought were like very basic research questions that you would think at this point in 2025, had been answered in the 60s or 70s, right, but they haven't, and so I think. So what I learned is that if you Google, you know why do period cramps hurt? You're going to get an explanation that tells you about prostaglandins, which are messengers, kind of like hormones that are released when your progesterone dips, basically your progesterone dips telling your body like, okay, time to have a period, that causes prostaglandins to get released.

Speaker 2: 12:24

The prostaglandins bind with receptors in the muscle of the uterus and tell the uterus to squeeze or contract. That is what like squeezes the blood out of your uterus and the uterine lining and when your muscle is squeezing that can hurt, it can get sore. It can also pull on the muscles in your back, your pelvic floor muscles. They kind of compensate for that squeezing. The prostaglandins also flood into your system. They don't just affect your uterus, they also affect other muscles in your pelvis, but they also affect things like your colon and your intestine, which is why you get period poops, which are amazing, yes, yes.

Speaker 2: 13:05

And so that process just learning about that in my own research, I was like oh, okay, and in my research they say the pain comes from something called ischemia, which is when a muscle squeezes so tightly for so long that oxygenated blood can't get to the muscle fibers and the muscle fibers will die if they don't get oxygenated blood. So they basically try to get your attention and experience pain. They say like this is you know? If it happens in your arm or your leg it's called a Charlie horse, right, that's ischemia. And so you're essentially getting a Charlie horse in your uterus and that's the widely accepted cause of all dysmenorrhea. All period pain is like it's ischemia from the prostaglandins telling your muscle to squeeze, right, I was like, okay, I didn't know that before. Like, I knew the uterus was squeezing to get blood out, but I didn't really know all the details behind it. That makes sense. So I guess my death cramps is just like too many prostaglandins, like so much ischemia that it's like locking up those muscles and causing so much pain. But like I still don't really understand why it happens sometimes and not other times, right.

Speaker 2: 14:19

So I go and visit this lab and I like, lay, I go to the lead researchers and interview them and I say, okay, here's how I understand period pain to work. Is that right? And they're like no, you're like. I was like what? Like? Because that's literally what every textbook, every research paper that I was able to find like on in my own research that's what it said causes period pain. And they're like well, that's probably only part of it. And I was like okay, well, what are the other parts of it? And they're like we don't know. Yet you're like wonderful, because what they're doing is they're putting, so they're you know they're doing what a good scientist would do and they are testing the accepted theory. So they are saying, okay, is ischemia what's causing all period pain? They are putting people who are having dysmenorrhea, who are having cramps, they're putting them in an MRI and they're having them squeeze a little sensor whenever they are actively feeling pain from a cramp and so what? They're able to see what the uterus is actually doing and see when they are experiencing pain. And so if it was ischemia causing the pain, you would expect when the uterus contracts to line up with when they feel pain. And it doesn't Interesting theories that actually the pain is from other muscles in the like abdominal muscles contracting in anticipation of pain or after the contraction has already happened. There are a lot of theories around, like inflammation, that the body can react in a way that sends more inflammatory mediators to that area. But ultimately we don't know and it probably has more to do with our brain's pain processing pathways than it does with the actual activity of the muscles. And that was fascinating to me. That is fascinating.

Speaker 2: 16:40

30% of menstruating people experience enough period pain that it is in some way debilitating. It keeps you from living your day-to-day life Right. And that's millions of people, that's 30% of menstruating people worldwide would be about 522 million people, over half a billion people worldwide having debilitating pain once a month potentially and we don't know why we haven't really studied. The GYRL lab is one of the only labs getting NIH funding, at least right now, currently to study dysmenorrhea and period pain, and so they are making progress, but this is progress we should have made years ago, and it's because of what you were talking about that there's just doesn't seem to be this curiosity. Prostaglandins were discovered in, I think, the 1970s and we stopped there. Science said, like great, we did it, we get it, that's what it is, no further questions, and that's where we stopped. And so I'm very, very grateful and excited that more research is being done and more progress is being made, and I'm also angry that there was not more curiosity or interest in like half a billion people's pain.

Speaker 1: 17:58

Right, Well, and I think and have you experienced this in all of the work that you've done that the lack of curiosity is more so in women's and reproductive or menstrual health. Like it's not. It's been such a taboo topic for so long and people haven't talked about it. I mean, think about it Like did when you were growing up, when you had your period? Were you outwardly excited to talk about your period? Or was it something that you didn't talk about and you didn't hear other people talk about, unless you were in, like your little friend group, you know, in middle school, and then you would like, when did you have your period? Yeah, you know. Like I don't know why the period was so excited to get in the first place. Like, yeah, I don't know why the period was so excited to get in the first place. Yeah, it's a sign of womanhood.

Speaker 2: 18:43

We're also terrified to have anything happen to us that's not quote unquote normal, yeah, and our experiences, in anyone who gets a period, our experiences are so different and it's normal to have a variety of experiences. Not that it's normal to be in extreme pain, not that it's okay. Right, it is very, very hard to be 12, 13, 14, 15 and be forced to reckon with this idea that there is no normal for this experience. It's going to happen when it happens, you can't control it Right. Normal for this experience? It's going to happen when it happens, you can't control it, right. And all of your friends have different experiences and different things they think are normal and that's terrifying. And so we also are really given.

Speaker 2: 19:32

And I grew up with a very progressive hippie mother who and I say that with love and admiration who was very open about reproductive stuff periods like it was never a taboo issue in our home. And I still got the message very clearly from the world I live in that you do not talk about your period. The consequences of talking about your period are you are shunned, you are laughed at, you are tittered about, and so you avoid it at all costs. And even when we get older and we don't consciously make that choice. We are trained, we are conditioned not to talk about it, and it damages us because, like the only our doctors, our gynecologists don't necessarily, I have learned do not necessarily have accurate information on our health and our bodies and what is normal or possible and where we could get more help. We have no information, right, unless we are lucky enough to have, you know, a doctor who does have good information or is willing to look stuff up or refer us to a specialist and not all doctors are.

Speaker 2: 20:57

Our experiences with our periods harms us in both psychologically and physically, because we are isolated in our pain, which, like psychologically, gives us more pain. Our pain is worse because we are isolated and alone in it. We are social animals. Our brains have developed to want to be around other people, to want to know we're not alone, and so if you are having pain and your brain is going to tell you there's something wrong, if you're alone in this pain, if you don't know why it's happening, that's worse, right? So, literally, our pain is worse because we're not talking about it, and if you think about who benefits from us not talking about our pain, it's not us.

Speaker 1: 21:44

Nope, it's to make people less uncomfortable.

Speaker 2: 21:48

Yeah, and not just people, it's men.

Speaker 2: 21:51

It's people who do not get periods, and they do not. One, talking about our pain would potentially make them uncomfortable, because it is a part of the body that they don't have and an experience they don't have. And two, being open about our suffering and our pain would force them to do something about it, even if that is just accepting that we can't that. Okay, I'm in pain, I can't show up to work today. I can't do. I do childcare today. I can't pick up my mom from, like, her appointment today. You have to do it.

Speaker 2: 22:26

And when we shut up about our pain, when we keep it to ourselves, when we just, like white knuckle our way through it, that's not benefiting us, that's harming us. That's benefiting the people who rely on our labor, who rely on our emotional, social, unpaid labor and paid labor, and so that's another reason that we're encouraged not to talk about it. It may not be direct I'm not suggesting that every man in your life is trying to, you know, extract labor from you when you're on your period but that is what ends up happening when we don't talk about our pain and demand support when we are in debilitating pain.

Speaker 1: 23:07

Yeah, and it's so true. I remember my husband and I were talking about in the midst of my pain with my period and this is when we first got married and he went to the store to get me tampons and pads and and this like 90 year old woman he's probably not 90, but like older woman was like I get that time that kind too, and he'd forgotten that he had like some potting soil right there with the pads and tampons and he automatically was like the pads and tampons Okay, and she meant the potting soil. But he I was like did that embarrass you? I remember asking him did that embarrass you? It was no, that didn't embarrass me. He said I shouldn't be embarrassed because I have a woman that has a cycle Like I'm proud of that, I'm proud that I can do this for you. He's like you're in pain.

Speaker 1: 23:59

But I will tell you that I myself didn't want to even check out pads and tampons unless and this is like before self-checkout was really a thing. I would always find the checkout that had like the oldest woman at the register, because I didn't want to be embarrassed by it and that is. And so I think just how that plays out with not only us as menstruating people, but also like how that plays out in society and how we get embarrassed, is not okay, because I think it is more harmful. It's more we're not talking about the serious things and that's why I think for a long time not fully, I think this is only a component of it why research wasn't done on women, why we don't know why we have these cramps.

Speaker 2: 24:46

Yeah, I think because we didn't talk about it. It's one of those things that if you stop and think about it for two seconds, it makes no goddamn sense. No, because half the population of the world, for at least half of their life for potentially, you know, potentially half of their lives is menstruating 12 times a year ish. And so why are we living in a world where we are going through these, like crazy acrobatic, you know tricks to hiding tampons, like hiding menstrual products, not talking about it in public, like going through all of this labor to hide it? Who's doing the work to hide it? Us, while we are at our lowest point, sometimes while we are feeling the worst, we are also putting in all this effort to hide it or being made to feel uncomfortable about it, and it is no sense. And also, the species wouldn't continue if we didn't menstruate you know like it makes no sense.

Speaker 2: 25:44

And to your point about women's bodies not being studied, I mean that was a huge part of the podcast as well, of like I understood, like I kind of intellectually like knew that women were less represented in medical studies and I vaguely remembered that, like in the past, there was like a whole thing where women's bodies weren't studied at all. And I vaguely remembered that, like in the past, there was like a whole thing where women's bodies weren't studied at all. And I was like yeah, yeah, yeah, I know, when I actually looked into the actual history of it and the facts around it, it's wild, like, truly wild, the like contortions that the medical and scientific industry goes into to not study female bodies. And part of the reason that they will say is that women's bodies and women's cells, like down to they don't use female lab rats, no, a lot of the time because they say it's because of these hormone fluctuations. Oh, dear Women, female bodies, female animals have these hormone fluctuations and that makes it much harder to study.

Speaker 2: 26:50

It's another factor that you know could complicate it. Female lab rats have like four day hormone cycles or something and so like, oh, you'd have to replicate the experiment like four different times to make sure that the hormone fluctuations are not like changing the results of the experiment or whatever. And so they're like we're just not going to do it because male you know, male lab rats, male humans, like they don't have these kinds of hormone fluctuations that could really mess up the data we have hormone fluctuations.

Speaker 1: 27:21

Right.

Speaker 2: 27:23

So it's not only Half the people who are taking this medication or whatever are going to be having these hormone fluctuations. So like, even if it's a little more complicated, isn't that effort? That's well worth it. And it turns out, no, not to them. For a long time, it was sort of accepted in science that whatever results you got from male rats, more male human participants, you could just also apply to female participants and or female you know female people who are going to be taking this drug. And it's not true.

Speaker 2: 28:00

If you are ovulating, if you are cycling, your hormone fluctuations affect every single organ in your body and the way that it functions. Like I'm on an antidepressant, I'm on an SSRI. That SSRI is the same dose all month, yet my hormone fluctuations mean that it is much more effective in my follicular phase than it is in my luteal phase, which is when I need it more, and so there are lots. There are, just recently, some pushes to change some of the dosage, and this is, by the way, this is true about cold medicine, this is true about so many different medications that if you take it in your follicular phase, it might work very differently for you than it will in your luteal phase, because the vastly different levels of hormones affect your digestion, it affects your liver and your kidney function. It affects all these different organs and yet that medication has not been tested on people at different stages in their hormone fluctuation.

Speaker 2: 29:04

So, they don't know. It's also why women experience a much higher rate of adverse reaction to medication, and it doesn't seem to matter. Our quality of life and our experience and our level of pain does not really seem to matter enough to science and medicine to get them to change and change is hard. I have an aunt who is a scientist and she has explained to me things that I didn't think of before that just starting to include more women in clinical studies would make it much harder to compare results to studies done in the past with different populations. It would mean that you would have to replicate it, which would double the budget for a lot of these studies which, especially in today's climate, would be really hard.

Speaker 2: 29:50

But again it's like well then, what are we? What is the point If half the people taking this medication are going to be reacting to it differently? What's the point of not doing it this way?

Speaker 1: 30:02

Well, and it's also like not only are we lacking the curiosity, we're also lazy in research, like that's the bottom line too, is you want to get and I don't know this for 100% certainty, but I would guess that if you are given a certain amount of grant funding to do research, you need to get that research done within a specific period of time, or you don't finish it. So when you're making something more complex, when you're researching something more complex, you're going to need a bigger budget, and if you don't have that, you're just going to go the easiest route and hopefully the best route for that budget. Now, I'm not saying that's exactly what happens, but I would have to assume there's some of that at play when it comes to researching women's health.

Speaker 2: 30:47

Right, and you know, one of the frustrating things about digging deep into this issue is that, you know, we want to be mad at the doctors, right. We want to be mad at the people who are not well informed and are not giving us the information that we need or giving us the treatment that we need. We want to be mad at the scientists who are choosing to do the work this way, who are choosing not to include more women participants in these issue. It is the definition of a systemic issue which is like it's not a problem of bad actors, right, it's not a problem of bad apples. It's a problem of the entire structure of our society, of our medical industry, of our scientific research, of our scientific research.

Speaker 2: 31:51

The way that that is funded and structured discourages and disincentivizes all of the changes that need to be made in order for women to be fully represented in these studies, for these basic questions about our anatomy and functioning to be answered. And you know when you have to zoom out to really see that. And it's incredibly frustrating because, short of mandates which, like the NIH, does have a mandate, it just doesn't get enforced and it's very hard to enforce for including female participants in these studies, and you know, it is hard to imagine how we can get there, because without completely tearing down the entire system and starting from scratch. I mean, this administration is pretty well along into tearing down the entire system, but I don't necessarily trust that it will be rebuilt in a better way.

Speaker 1: 32:37

Well, and we'll see. I think one of the things that I have become more aware of is that this isn't just a US issue. This is a worldwide issue, and this is something that you know, I feel like. For me, I was completely oblivious to the people in the UK who are still struggling with this, and we're all dealing with a lot of the same issues because, like it or not, we share a lot of the same research, and so that's the big part of it. And if one country's on it, unless you're like of the same research, and so that's the big part of it, and if one country's on it, unless you're like really wanting to research it more, can they just don't.

Speaker 2: 33:14

And that's so hard, and I mean it is perversely gratifying, I think you know. I think we look at a lot of the problems with our healthcare in the US and we say single payer healthcare would solve a lot of these problems. But this is a problem that, like, yeah, you look at the UK and places in Europe that have, you know, single payer health care, that have nationalized health care, and they might have slightly different problems. You know, right on par, like, I don't think you're better off having endometriosis in the UK than you are in the US. It is maybe in Switzerland or Sweden or one of the Nordic countries. It seems like they have some stuff figured out. But no, it is a worldwide problem, in no small part because we're all in. All of these Western countries are essentially based off the same structure.

Speaker 1: 34:07

Right, yeah, exactly Exactly. We've talked about the challenges and the shocks of what you've learned doing this podcast and kind of sifting through, not only figuring out what's best for you and your care, but also like we got to talk about this more what is one thing that you have taken away from doing the podcast, or maybe a couple of things that encourage you about what not only you're doing, but the direction that we can go as people with menstrual cycles, people with endometriosis. What encourages you most?

Speaker 2: 34:40

Okay, I have so much to talk about. I'm so glad you asked this question because there's so much that feels hopeless and there's so much that feels like too big, too much to wrap our heads around or to do anything about. But there are so many good things happening at the same time. One there are so many incredibly smart, incredibly driven people working on these problems. The people at the GYRL lab are working on this. If you go to cureperiodpainorg, they are always running studies that you can actually participate in. Some of them are just surveys you can fill out, and so I highly encourage they're always looking for people to participate in these studies. So go see if you're eligible. Some of them are even paid. So go, go, go, go.

Speaker 2: 35:21

Yes, there are people advocating at the highest levels of government for more research into endometriosis, more research into menstrual pain, into women's health. People who are like lifelong government, people who know how the system works I don't even know how it works well enough to say, like what their jobs are, but like they're not lobbyists, they're like doing this for the society, for women's health. Research is doing incredible work, so that is incredibly hopeful, that like a few, like people who know more than me and who are much more qualified than me, are like. Working on this is so, so good to know. A Society for Women's Health Research is also always looking for more people's stories, so if you go to their website, you can just write your story there and they can ask you permission to share it on their various channels or with Congress, people and senators. So that is a way that you can immediately just like help them, help you.

Speaker 2: 36:16

Another thing that gives me a lot of hope is that, looking at like zoomed way out, looking at the history of women's health and how we have been treated through history, the one thing that I see as a through line is the more access to information we have as individual people trying to get better healthcare, the better off we are Right now. If you look, before the printing press was invented, it was really hard to get accurate information about healthcare, the way your body worked, anything like that you were reliant on, potentially a village wise woman or a midwife, and that these systems of knowledge died out. And now we, at this point in our history, we have access to more information, and more quickly than we ever have had in our entire existence as human beings. Obviously, it's a double-edged sword, because we also have access to all the bad information, misinformation. But if we can be media literate, if we know good sources, if we know how to check and validate our sources, we can have access to all the information out there. Basically, I read a lot of research papers, medical papers. I don't understand all the words, I Google them. I have a friend who's a data scientist and sometimes I send her a paper and say here's what I think this data is saying. Can you tell me if I'm right or not? And then she'll call me and we'll talk about what the difference between an average and a mean is and I'll try to remember my high school stats. But we have access to that information and we have access to all of the things we need to decode that information. And so, yeah, it's a pain in the ass, it sucks that we have to basically get amateur medical degrees just to care for ourselves, but that's where we are right now. We also have access to each other and I think that's a hugely important piece of the puzzle.

Speaker 2: 38:15

I agree there are a lot of people doing what are sometimes called like women's circles just getting together with other people who are menstruating, people with uteruses, together with other people who are menstruating, people with uteruses getting together in groups from, you know, three to a hundred, over, zoom over, like in person, in your living room, in a local coffee shop, at a bar, wherever. I had one recently. I think I'm going to keep doing them, monthly, I think, and call them clam bakes, because that appeals to my sense of humor. Yes, but just literally getting together with a group of people who are experiencing different things, going around and you know you are going to doing it this way, you are going to find other people who are experiencing things similarly to you. I didn't know.

Speaker 2: 39:00

You know, I invited kind of a random group of people that I knew to my house. About 12 people showed up, I think. I invited like 25, 12 showed up. We had some wine, we had some snacks, we went around and just like, said what was good, what we're each dealing with. Some of these people are people I've been close with for years. I had no idea some of the stuff that they were dealing with. We ended up having a long conversation about IUDs and insertion. Oh yeah.

Speaker 1: 39:30

And some people.

Speaker 2: 39:31

Some people in the group had experienced an IUD insertion where they were given lidocaine, where they were, you know, given topical local anesthesia, and we you know other people in the group were asking where did you get that? How, like, cause, I've tried to get that and they refuse it. And so we shared information about, like, which locations, under which insurances cover like, uh, local anesthesia with IUD insertion, and people went away with actual actionable okay, next time I need an IUD, like I'm going to go to that place because I'm it is important to me to have anesthesia, and so, like that kind of that's an empowerment, that kind of sharing of information so that we can get what we need, what we deserve in terms of health care, and know that we are not alone in dealing with this. That is incredibly important, yeah, so those are things that give me a ton of hope with this.

Speaker 1: 40:27

That is incredibly important. Yeah, so those are things that give me a ton of hope. I have hope that you, that there are more people taking their platform and talking about it and being open about it and being vulnerable. I think sometimes it can be overlooked. You know what we do. It can be a very vulnerable thing to do, because you're talking about your healthcare A lot of times, you're talking about your challenges and sometimes that's not always the easiest thing to do, but I have hope that more people are talking about their care, they're looking at it more, they're advocating and they're showing how to advocate better for themselves and they're demanding more from a lot of people, everyone that has a hand in our care, and I think that that is what's going to change the trajectory of healthcare in general, but women's healthcare specifically, and so I have just an immense amount of hope, given that women are tired of becoming second-class citizens and they're speaking up and they're saying this is not good enough for us anymore.

Speaker 1: 41:26

Our lab values shouldn't be based off of men's lab values. Our lab values are our own. We're individual humans. We, you know, we do operate differently, and so talking about it, bringing it to light and putting it out there in a place that leaves space for criticism can be really challenging. So thank you for stepping into that space and taking the funding that you did get to do something like this, because this is so important and it's so impactful. So thank you for doing that and thank you for sitting at the table with me and talking about this because Of course, it's my pleasure. This is how it changes.

Speaker 2: 42:02

Yes, and I will say there is a lot of good research out there that shows. I forget the exact number, but you only need about 3.5%, and the more that we just talk to each other about this, the closer we get to that 3.5%. And doing something you know, you don't have to go to a physical protest Like you can write your congressperson about this. You can share your story with the Society for Women's Health Research. You can write an open letter on social media about how dumb it is that this is the way our system works. Yes, because I think the more yeah, completely the more open we are to this, the more we just talk one-on-one to each other, the more awareness there is. And we talk one-on-one to people in our lives who don't get periods, who don't have uteruses, and help them understand how dumb this system is, that half the people on this earth can't get adequate healthcare or accurate information because of the way the system is set up. You know it's a big system but like we made it up, we can change it.

Speaker 1: 43:18

Right, absolutely. And if you don't feel empowered to say all the stats or say all the facts, point people to the right direction, because sometimes that's a really overwhelming thing for us to do, because we are so inundated within our own things that we're dealing with that sometimes it's hard for us to convey this accurately. Nate's podcast is amazing Cramped. If you haven't listened to it yet, go listen to it. It's amazing. She's a phenomenal communicator. Love the fact that you open up the door to so many different conversations and things that we should be paying attention to more, and you're bringing in some really good evidence-based materials as well, which I think is crucial to the way that we approach this. So thank you for doing that and I encourage you to go check out cramped and it's streaming everywhere or where's this.

Speaker 2: 44:07

Anywhere you get your podcast and it's cramped. C, r, a, m, p E D. My name's Kate Helen Downey, so you can find me on Instagram at Kate Helen Downey, or on Tik TOK at Kate is cramped.

Speaker 1: 44:20

Love it, I love it. Go follow her there, kate. Thank you again so much for sitting down with me and this has been so fun, so fun. Until next time, everyone continue advocating for you and for others.