PLEASE NOTE: This is a minimally-edited transcript that originates from a program that uses AI.
Anita Rao
Kate Helen Downey, like me, got her period in eighth grade her first few times mirror my experience some cramping and period poops and learning to manage it all as an awkward middle schooler. But then this happened to Kate.
Kate Downey
I was in my eighth grade science class, and I suddenly was sweating over my whole body. I felt like I was going to throw up. I asked to go to the bathroom, and as I was walking down the hall, I realized I couldn't stand up all the way. I was completely hunched over. I had one hand on the wall, on the lockers, trying to hold myself up.
Anita Rao
Kate makes it to the bathroom, sees that she's gotten her period, and then, debilitated by pain, starts literally crawling down the hallway to the nurse's office.
Kate Downey
My face was gray, and I thought, Okay, I'm gonna get there and she's gonna call an ambulance.
Anita Rao
But when Kate finally got to the nurse's office, something very different happened.
Kate Downey
I described my pain to the nurse, and she said, Oh, do you have your period? And I said, Yeah. What does that have to do with anything? And she said, Okay, well, here's a hot water bottle. You can stay here for a little while, but you have to go back to class. And it just was this cognitive dissonance between like, this is an emergency. Why is no one calling an ambulance? Why is no one concerned like, suddenly, if you say you have your period, suddenly this amount of pain is fine.
Anita Rao
This experience was seared into Kate's memory as the first instance of what she came to call death cramps. It also marked the beginning of a decades long mystery what was happening inside her body and why. This is embodied. Our show about sex, relationships and health. I'm Anita Rao.
In the decades after that experience, Kate's menstruation journey oscillated between manageable periods and death cramp periods with no explanation of why. So about a year ago, she set out to find answers both to her own medical mystery and to a bigger question, why do we know so little about period pain? Kate documents this journey in cramped a 10 episode podcast series today we dive into her discoveries, from revelations about how science treats women's bodies to the answers she's found after spending 1000s of dollars to understand her pain, Kate and I started our conversation reflecting on that first death cramp experience when she turned to her mom and their doctor for help.
Kate Downey
So my mom knew something was seriously wrong. And she took me to her nurse midwife, her kind of gynecologist, basically. And that was my first pelvic exam. And this nurse midwife, you know, asked me a bunch of questions, asked my mom a bunch of questions, and then just says, yeah, some women have really bad periods, and you know, it usually goes away when you have your first baby, and this is when I'm 14. So I'm like, Okay, well, in the meantime, or for the next at least 10 years, like, what do you want me to do about this? And I didn't talk to my mom about this until just recently for the podcast, but she also was pretty shocked that this medical practitioner who she trusted was kind of so cavalier about this pain.
Anita Rao
What was your takeaway like in that moment? If you can go back in time like, what was your takeaway about what it meant to kind of have a period and have cramps at that point after she said that?
Kate Downey
I was just very confused, and it made me not want to think about it. I knew everyone not taking this seriously was incorrect, and I, you know, had been lucky to be a very healthy kid, so this was the most pain I'd ever felt in my life. And I knew it was incorrect that the reaction was like a shrug. But I didn't have anywhere else to go. I didn't have anything else I could do about it. My mom did some research, and always was really, you know, brought me heating pads, brought me ibuprofen, helped me sneak ibuprofen into my school when I was about to get my period. Because at that point in the early 2000s late 90s, early 2000s you were not allowed to bring any kind of medication, even over the counter. It had to go through the nurse's office. You had to, like, register it with the nurse's office and have a prescription. And so she would help me smuggle ibuprofen in my lunch box so that if I started to get cramps, I could just take a bunch of ibuprofen so. Was definitely a like ally to me, but she didn't have any more information than I did, really, and this was pre Google, so you couldn't just kind of Google severe period cramps and find information. So it started this disconnect for me that what was happening to my body was like, seemed like it was unknown to science, but seemed like it was something these doctors had never seen before. They were acting like it was this big mystery. And so I just kind of avoided thinking about it unless it was actively happening to me, because it was really scary. So I tried not to pay too much attention to it, and tried to just be normal.
Anita Rao
What's the difference between death cramps and other kinds of cramps? In your words,
Kate Downey
There's no trigger that I there's no like, obvious cause or thing I do differently. It's like Russian roulette playing Russian roulette with your uterus every month. You don't know if you're gonna spend six hours in the bathroom, throwing up every 10 minutes and passing out, or if you're gonna be able to go about your normal life and go to work or school and hang out with your friends, so you're just kind of living on the edge. But when those death cramps happen, it is an escalation of pain, almost like, almost like contractions, where it will be really, really bad and then kind of ease off a little bit and then be really, really bad. And the times when it's really, really bad, the pain is at like an 11. It is excruciating. It is impossible to, like, concentrate or talk. I throw up, but it's not the kind of throwing up where you feel better afterwards. It's just the kind where your body's in so much pain, it's doing anything it can think of to do something. So you, you know, have horrible diarrhea, because your body's like, maybe it's something in the digestive tract. Get it out. You're just kind of squeezed out like a tube of toothpaste.
Anita Rao
So you are now 36 years old, that means you've been experiencing this debilitating pain for more than two decades with very little explanation about why. But a year ago, you set out to get some answers. Tell me about the moment when you transitioned your thinking about death cramps. From this is how it's always going to be to I am going to take a different approach, and I'm going to try to find some answers.
Kate Downey
Yeah, it is really dumb, but doing a podcast about it, okay, tell me more, somehow made me accountable. Because I had never been accountable to anyone but myself, for my health and for finding a reason for these death cramps. And for 22 years, I just wanted to live my life. I didn't want to dig so deep into it, and really it was only impacting my life once a month, because I was so scared that I would get the death grams every month, and then the actual death cramps would only come once every three or four months. So that's really easy to just kind of put aside in your mind, even though it totally messes up your life, even though it totally it's not a way anybody should live. But it is easy to just put aside when you don't want to deal with it. And obviously, every single doctor I saw in those 22 years, I would say, Hey, I get horrible, horrible period pain. What? What do you think's up with that? Like, what could this be? And every single doctor would try to put me on birth control, which I tried, doesn't work on me, doesn't do good things for my mental health, and doesn't help my period pain. So I said, No, thank you to that. They would also send me for an ultrasound. The ultrasound would come back normal, and they would say, okay, everything's normal. There's nothing wrong with you. Have you tried ibuprofen? Yes, yes, I have tried ibuprofen. Okay, unhelpful. And when you try to get help over and over and over again and you don't get help, eventually you stop trying. Yeah, I got better at managing my symptoms. I got better at taking ibuprofen prophylactically. So before I even was supposed to get my period, I found that that was really helpful. Didn't stop me from getting death cramps completely all the time, but when I finally started working on this podcast, which was a project I had wanted to do for years, but the timing had to be right. I got a grant from the Simons foundation to make 10 episodes, and I structured the whole thing on my search for answers, because by that point, I knew I was not alone. I was not a medical freak. There were lots of other people out there who had very similar symptoms to me, who were in enormous pain, 90% of people who menstruate experience some kind of period pain, and 30% of people who menstruate experience severe period pain, meaning they are not able to continue with their daily life as usual. It. Stops them from going to work, going to school, doing the things that they would normally be doing, that's millions and millions of people. And so I thought I could go get some answers for myself that would probably apply to lots of other people. And for me, one of the hardest things about this experience was how alone I felt this whole time, and it was almost more crazy making to know how many other people were out there, but that we just aren't talking about this. Like, how are 30% of menstruating people in this much pain? And doctors are like, Huh? I don't know. I've never heard of that. Like, that's crazy.
Anita Rao
What was your like, deepest, most vulnerable hope, if you can think about what that was when you embarked on this journey, like, maybe not what made it into the grant application, but what you felt like in the depths of your own heart,
Kate Downey
Yeah, I mean, I think this whole time since I was 14, the hope is some doctor out there has an answer for me, like, this is what is happening to you. This is what's causing your pain, and here is the cure. Here is the thing that will take your pain away. Now that I look back on it, it is such a innocent, sort of naive hope of like, I just want someone to know what is happening in my body more than I do, and I want them to fix it.
Anita Rao
Just ahead, we're going to get some answers to why we know so little about menstrual cramps, and hear what it took for Kate to finally get a diagnosis for her period pain. You're listening to embodied from North Carolina public radio, a broadcast service of the University of North Carolina at Chapel Hill. You can also hear embodied as a podcast, follow and subscribe on your platform of choice. We'll be right back.
This is embodied. I'm Anita Rao. Today, we're talking with Podcast Producer Kate Downey. Every few months since she was 14, Kate has experienced what she calls death cramps, extremely painful menstrual cramping that totally disrupts her daily life. Despite the severe pain, Kate had no explanation for why these death cramps happened, but about a year ago, armed with a microphone and a recorder, she started to search for answers in a new way and drilled down on two big questions, what exactly was happening to her own body and why is there so little information available about period pain? She documents the journey in her podcast cramped and her research uncovered things that I had never come across before in my 22 years as a menstruating person. And I told her so.
So really early on in your research, you started to gain some clarity just about kind of that very basic first question of like, what is happening inside of a body that causes period cramps? And listening to your podcast, I learned more about cramps in the science of it than I have in 36 years of my life as someone who is works in the sex and health space. My dad is a physician. My mom is a midwife. So this knowledge is is not super out there. So thank you for putting it out there. But could you kind of share in like, seventh grade science class terms, what is happening in the body when cramps happen?
Kate Downey
Yeah, I just want to say you are not alone. Like it is not crazy or weird that you don't understand or have never, like, looked into it. That has been my experience this whole year of researching and working on this podcast, is like I had horrible period cramps my whole life, and then what I had never, like, Googled, why? So you're not alone. But when I started looking into this question, this very basic question, why do period cramps hurt? I thought I was kind of like, yeah, the uterus is squeezing to get the blood out. Like, that's why cramps hurt. And yeah, but it's more than that. So to take you through just very kind of quickly, surface level, what happens is, as your progesterone drops right before you get your period, your body releases prostaglandins, which are little chemical messengers that bind with receptors in your uterine muscle, and basically just tell the uterine muscle to squeeze. And so like any other muscle, it squeezes, it contracts, and then it releases so that it can get fresh blood flow. What happens when there are more prostaglandins than necessary is or if your body is more sensitive to prostaglandins than the average person, what can happen is that muscle will cramp or squeeze very tightly and it. Won't release, it won't relax enough to get fresh blood flow. And when a muscle doesn't get oxygenated blood flow, it creates pain. It signals pain to your brain, because if a muscle doesn't get blood flow, if a muscle doesn't get oxygen, it dies. And it wants you to know something is wrong. Something is not okay. When this happens in another any other muscle in our body, it's called a Charlie horse. Okay, you're like in your foot a medical term. Yes, it is ischemia, which is the medical term for a lack of blood flow that causes intense pain.
Anita Rao
You learn later that it's more complicated, but I want to follow up on the thread that you mentioned that, like, we're not that curious about people with uteruses. We don't know that much. And I think this is something that is said a lot, but I was really surprised to learn that the reason why is is, I mean, there are a few reasons why there is kind of bad data, but there's also a lack of data due to this really specific policy that was in place. So from 1977 to 1993 there was an FDA policy in place that excluded women of reproductive potential from the early stages of clinical trials. So tell me why this came to be. Because I think this is, this is really helpful in understanding the why behind the lack of data.
Kate Downey
Yeah, you could do a whole podcast just on this story. Basically, in the 1950s ex Nazi scientists got together in in a pharmaceutical company in Germany and created a drug called thalidomide, and this drug is basically an anti nausea and it does a few other things, but it was deemed safe for pregnant women and was prescribed to pregnant women for morning sickness. Though it was deemed safe, it was not actually tested on pregnant women, and it turns out, this drug caused severe birth defects. And although the FDA had not approved it for use in the United States, there were still some people in the United States who took it, not a ton, but some, and it became this big warning about the dangers of untested medicine, on women, on pregnant women, on fetuses, that we had to be really, really careful about new drugs and women and like, that's not wrong, right? Like, we shouldn't be giving untested drugs to anyone, but especially someone who is growing a new human, who is very vulnerable to fluctuations in chemicals. But the FDA overreacted and overcorrected. And what happened was, in 1977 the FDA basically banned any women, quote, of reproductive potential from taking part in clinical research. We really need to unpack that phrase, yeah, women of reproductive potential, because we're not saying women who are pregnant or are trying to become pregnant shouldn't take part in these clinical drug trials, right? We're saying any woman who has the potential to be pregnant cannot take part in these drug trials. That means even if you are on birth control, even if you are married to a man and he has had a vasectomy, and there's no way you could be pregnant. And it's also crazy because thalidomide wasn't giving people birth defects in the testing phases, right? What had happened is they had been prescribing thalidomide to pregnant women, even though it had never been tested or really studied in that way. So they are correcting for something that wasn't actually the problem.
Anita Rao
So we don't have much data due to some of the reasons that you just laid out. But the other piece of this is that the data that we do have has some serious complications. You went looking for an answer to a question, how many people suffer from severe dysmenorrhea, which is the medical term for painful periods or death cramps. And you found a study that said 16 to 91% of people experience pain during their period, between two to 29% experience pain that limits daily activities. Both of those are huge ranges. And so you turn to your friend who is a data scientist, Andrea Jones-Rooy, to look at some of these studies and try to get some clarity. And when you talk to her about findings on your podcast, this is what she said.
Andrea Jones-Rooy
I've read a lot of meta studies not to brag, and I make a living talking about bad data and telling people why their data is bad. I have never seen more. Data in my life.
Kate Downey
Why am I not shocked?
Anita Rao
Okay, so you went on to talk with her about why this data is the worst. What did you find out?
Kate Downey
Yeah, it's really bad. These ranges 16 to 91% and two to 29% they are borderline meaningless, right? Because we're talking about, when we talk about the difference between 2% of menstruating people and 29% of menstruating people, we're talking about the difference between 36 million people and 522 million people. I asked Andrea to kind of give us a 101, on how they look at the data and how they are able to tell that the data is so bad. And Andrea basically came to the conclusion that the word severe was not defined well, even the word pain is not really defined well within this study, the methodologies of these studies are all over the place. There are a lot of reasons that this data is bad, but I think at the core of it, it's because we as a society don't really care about period pain. And she told me about the reasons that any kind of data is bad is usually because it's either very hard to measure, we don't care that much about measuring it, or it's very expensive to measure, and kind of all three things are true about Period Pain data.
Anita Rao
So you were researching the main cause of severe period pain, you were going through the data, and then you kept coming across information about endometriosis, which is a condition that is the most common cause of bad, painful cramps. It's a condition where the tissue that is similar to the inner lining of the uterus grows outside the uterus, and it often affects ovaries, fallopian tubes, tissue lining the pelvis. Endometriosis is something that you had brought up to doctors before. When you had brought it up, what kind of response did you get in terms of testing or answers?
Kate Downey
Yeah, so in the internet age, you can't really Google severe period pain without coming across information about endometriosis, it has now become, thankfully, one of the more known about causes of severe period pain, and that's very recent. This has been a very under researched, under diagnosed disease, even though one in 10 people with uteruses has it. So it is something that I kept coming across. But every time I would bring it up to my doctors, you know, I'd say, Hey, I have severe period pain. I've had it since I got my period. It's only gotten worse. Can we check if I have it? The doctor would always say something like, well, your ultrasound came back normal. We would have seen it on the ultrasound. Or you don't have a heavy bleed, so you don't have endometriosis. It was written off by multiple doctors. I wrote it off myself, because the only times I had heard about endometriosis were when people were in pain all month long, and I thought because I was only in severe pain during my period that then it couldn't be endometriosis.
Anita Rao
So I feel myself kind of defending doctors in my mind when I hear you say that being like, but not like. I'm sure people were, you know, wanted to support you, wanted to help you. Like, yes, there are bad actors, but I guess, how do you think about that? Like, I sense that you feel angry at some of the providers who've missed things in your past. But yeah, I guess, like, where do you land? Do you feel like it is their responsibility to know more about endometriosis and therefore have found it in you? Or what is your your thinking on that?
Kate Downey
Yeah, this was a real big journey I went through, and I'm still going through very I am in the middle of it. I am so angry, I am so upset. I am full of rage. Yeah, at the beginning of this process of researching this, this subject, of trying to get answers, all of that anger was directed at the doctors I had seen the doctors who had failed to help me or diagnose me. But as I got deeper into the research, as I kept asking more questions, and as I talked in depth with more doctors and specialists, I started to understand what's going on behind the doctors. So before the doctor even gets to me and has an opportunity to help me, they go through medical school, and if this is an OB GYN or a gynecologist, they are expected to learn everything about the female body and everything that could possibly go wrong. With it, everything that could come up as an issue during pregnancy, after giving birth, during breastfeeding, and everything that might happen during the normal course of someone's life, and that's too much, that's that's too many things. The other part of the problem is, and it's connected. Obviously, all of these are connected, but insurance undervalues endometriosis and the surgeries that are used to diagnose and treat endometriosis, which again, is the most common cause of severe period pain, insurance does not reimburse a doctor as much for an endometriosis surgery, as they do for, say, another kind of the same surgery, but it's for a shoulder which creates a disincentive for hospitals, for doctors to get that training. It's a feedback loop of disincentive under Education, mis education, misinformation and not taking Period Pain seriously at all.
Anita Rao
So doing this podcast did give you the personal push to pursue consultation with an endometriosis specialist to see if you could get more clarity. You saw a doctor in LA last year and without doing surgery, the specialist told you that they were 90% sure that you have endometriosis. So you have this like sense of disbelief that it's taken you so long to get a diagnosis for a condition that, as you said, affects one in 10 people with uteruses, and you're not alone. It can take a woman an average of four to 11 years to get an endometriosis diagnosis. So what did you learn from your specialist about why it is so tricky to diagnose?
Kate Downey
So endometriosis, as you said, is cells similar to the lining of your uterus existing outside of your uterus. The tricky thing about endometriosis is these endometrial cells can be anywhere in your body, usually, most commonly, they are in your abdominal region, your pelvis. When you have your hormone fluctuations that make you have a period, that make your endometrial lining that's inside your uterus shed and come out through your vagina you're also having, like, a bunch of mini periods, and all those spots of endometriosis, wherever they are. So imagine you have a tiny spot of endometriosis that is on your bladder when you are about to have your period. That little spot thickens up with blood and tissue and then sheds, but it has no way to get out, so it is just bleeding into your body. And if you have a lot of those spots, or if they're in very sensitive areas, you're getting inflammation. Your body doesn't like it when you bleed internally, so it sends all kinds of white blood cells, all kinds of inflammatory cytokines. They're called they're trying to fix the problem, but they can't fix it, and so it creates all this inflammation your body also creates scar tissue to try to fix the problem, to try to kind of wall off the problem from the rest of your body. But what that does is it creates what's called adhesions, which basically glue your organs to each other. So the issue with diagnosing endometriosis is those little spots can be literally anywhere, and so depending on what your symptoms are, your doctor may not immediately think endometriosis. And in fact, severe Period Pain is the thing that everyone thinks of if they think of anything, when they think of endometriosis, but what is as common is GI issues, and I have been constipated my whole life. I hope that's not TMI, we're
Anita Rao
Not at all. My dad's a gastroenterologist. You're good.
Kate Downey
But I have struggled with constipation my whole life. I thought that was just kind of the way my digestive system works. It turns out, probably because of a mix of spots of endometriosis and adhesions and how inflammatory the effects of endometriosis are. It slows down your digestion. It pulls pieces of your digestive tract over to the side, or pins it up so it can't work as well, and that's why I have been constipated my whole life.
Anita Rao
Well, yeah, so you're saying it's difficult because the symptoms are really varied, and to get a technical diagnosis, you actually have to have laparoscopic surgery, like it's not something that can be fully diagnosed with imaging or just like a physical exam. And I mean, you have put so much into getting an answer for yourself, a lot of money, a lot of time, a lot of brain power, and on one hand, it's great that you were able. Have the resources to do this, and you turned it into a successful project. But it also feels kind of Bleak to me that it took all of that to get an answer, like, how is an average person supposed to get an answer or a diagnosis? If it took you all of this
Kate Downey
Exactly, and that's that is fueling my rage a lot. I mean, I haven't added up the numbers recently, but as of January, I had spent over $10,000 just getting a diagnosis and trying to treat the endometriosis that I have that's out of pocket. So far, nothing that is related to my endometriosis has been covered by insurance. I feel very lucky to have this money right now. This is the first time in my entire life that I've had that amount of money that I could spend on this kind of treatment. And so if one in 10 people with uteruses have endometriosis, and the only way to get actually appropriate treatment for it is to pay $10,000 that's not acceptable. I think we should all be striking. I think we should all stop participating in a society, in a system that clearly doesn't care if we are in pain, expects us to show up for work with no help, with no medical assistance or treatment, without studying this thing that is putting us in pain.
Anita Rao
Just ahead, we'll talk about the people who are trying to change that system by researching new ways to treat severe cramps and menstruating people, We'll also explore how talking about Period Pain can actually change how some people experience it. We'll be right back.
This is embodied. I'm Anita Rao. After a year of researching period pain, podcast host and producer Kate Downey, unearthed a lot of new and surprising things, but felt one overwhelming emotion, anger. Anger at how little research there is around period pain and how poor the existing data is anger about how challenging it is to diagnose and treat common causes of severe period pain and anger that getting diagnosed for endometriosis, one of those common causes took Kate two decades and 1000s of dollars, but in this journey of creating her 10 episode podcast, cramped, Kate also found sources of hope. One of the more I guess, hopeful threads in your podcast is some of the research that you have done into potential treatments, and one of those being group therapy, that this experience of talking about your pain and really having it witnessed, talking about your period pain in particular, and really having it witnessed by it witnessed by other people who have similar experiences can actually lead to healing. It's wild for me to think about, like the psychology of pain and all of those threads, but tell me more about that and what you've begun to uncover about how it's powerful to talk about it like from an actual pain perspective.
Kate Downey
Yeah, this was one of the most mind blowing studies that I came across. And I interviewed the psychologist who ran the study. It was this wonderful study where she took a group of young women who were experiencing severe period pain and just brought them together a few times to discuss their period pain with each other. So they were sharing stories of what their period pain felt like, how it had impacted their lives, what they were struggling with. And they, you know, they met a few times. They were given some like, small coping mechanisms, like breath work or some sort of mindfulness stuff. And they were also given some education about like, here's what the causes might be. Here are some things to ask your doctor about. But they then went back to these people after the sessions were over and over a series of months, asked them how their period pain was in relation to how it had been before. And all of these participants in the study rated their pain lower after these sessions for up to a year. So just the act of getting together with other people, sharing information, sharing experiences, and knowing you're not alone, being seen and heard and validated, actually lowered the pain that they felt. And that actually makes sense, if you remember that pain is actually experienced in our brains. Yes, there's stuff going on in our bodies, but the signals of pain are interpreted by the brain, and our brains have evolved to help us. Social creatures. When we are social, when we are forging connections with other people, our chances of survival are higher, and so our brains actually feel more pain. They escalate the pain signals when we are feeling isolated, when we feel alone, when we are not connecting with other people. Our pain sensations are lowered when we are together with other people, when we are forging connections with other people, when we feel seen, heard, held, because our brains are like, Okay, you're safer. You're actually less in danger. And so the fact that we as a culture refuse to talk about Period Pain openly is actually causing more period pain and just the act of communicating with other people about your pain, talking to other people who experience what you experience, or even just are empathetic and really hear you and listen to you that lowers our pain. And if you think about how damaging it is that we are trained and conditioned not to talk about our period pain, not to make anyone uncomfortable with something that is causing us a real problem, it becomes even crazier that we allow this to happen.
Anita Rao
You mentioned, you know, the earlier like the power that having a microphone and a project has, like it can give you the ability to ask questions of yourself and others, but it can also give you access into spaces that you maybe wouldn't get access to otherwise, like labs where they're doing research about periods and period pain. You got to meet a lot of researchers who are really at the front lines of looking for new answers and better understanding. What about their findings gave you a sense of hope, if at all.
Kate Downey
So I went and visited the folks at the gynecology research lab, or G, y, R, L, in Evanston, Illinois. This is a whole lab that is studying dysmenorrhea, that is studying period pain, and they are doing the, you know, basic foundational work of asking the questions, what actually causes period pain like we think we know? Do we actually know? They are doing things like putting people who are currently experiencing dysmenorrhea into an MRI and having them squeeze a bulb when they are feeling pain. So what they're able to do which can you believe this has never been done before? They are able to match up when someone is reporting pain with what their uterus is actually doing, and what they are finding is that the pain someone is feeling does not necessarily match up with the contraction of the uterus. So sometimes they are feeling pain before a uterine contraction even starts. Sometimes they're feeling pain in the middle of it. Sometimes they're feeling pain after it's stopped contracting. They're feeling pain for a shorter amount of time than the actual uterine contraction lasts, which is telling them it isn't actually just the contraction of this muscle and the ischemia or the loss of blood flow that is causing pain. What is causing the pain? They don't know yet, but likely the uterine contraction is part of it, but there have to be other things going on, because the pain is not matching up to what medicine thought the cause was. So that's really exciting. That's really, really cool, that they are picking up where, you know, science and medicine left off and said, We did it. We figured it out. That's the only thing causing period pain. They're going hang on. We're gonna continue this. We're gonna actually get better answers, more precise answers, so that we can treat period pain better. They're also finding that about 25% of people who experience severe menstrual pain are NSAID resistant, meaning ibuprofen does not help them. They did this crazy study where they brought in a cohort of NSAID resistant dysmenorrhea sufferers, and they gave them NSAIDs, and then did a blood draw 90 minutes later. And for some of these people, there was no NSAID present in their blood. They had watched these people take the pill, and it was not in their bloodstream 90 minutes later. They don't know why. They don't know if this is they don't know how this could have happened, but they are trying to figure that out so that these people who have basically no way to get relief currently from their period pain, that hopefully they can develop a new drug that. It's the cause of the period pain that they are not resistant to.
Anita Rao
So some of this research is happening. Obviously, research requires funding. There are a lot of big, open questions right now about what funding is going to look like in the medical landscape with under the Trump administration, questions about the NIH and what may happen, and we can imagine that this is going to have trickle down effects. And I'm curious like I guess, given all of what you know about the research that exists and the potential challenges of future research and your own experience, I'm thinking about this like the way that conversations about periods and cramps are playing out online like kind of in a separate sphere from how they're playing out in the medical space, which is that a lot of people are kind of self diagnosing their period pain online. They're kind of coming up with treatments to share with one another. And there's a part of me that sees this and feels really wary of like, oh, is this? Like, is this just pseudoscience? Are you just buying, you know, pills off of Tiktok, but there is a part of me that's also really sympathetic, like, you want answers, it's not easy to get them through the healthcare system. How do you think about the conversation about period pain that is happening online in this moment.
Kate Downey
So we are at a moment right now where information is the most accessible it's ever been. It is easier right now to share information to a vast number of people than it has ever been in the history of our species, and that part gives me hope, because historically, access to information about women's health is the number one factor when it comes to, are you going to get good health treatment? Are you going to be able to get your issues dealt with? So that gives me hope we are able to share information with each other so easily. There are, of course, two sides to that coin, right? Because as easily as information can spread, misinformation can spread, whether that is purposeful or accidental, and we are more aware than ever of the giant gaping holes in our medical system when it comes to women's health, and that's great. It's really, really good that women are finding out, younger than me, younger than 36 that medicine is not really built for them and their needs and their bodies, and that's important. I we need to be more aware of that. But instead of fighting for better treatment from the system or changing that system or creating a new one, you know, the internet is doing what the internet does, and it is trying to fill that hole with products and selling you something and doing a coaching plan. And you know, this doctor or this private practice person, or this hormone coach is going to solve all your problems. And look, I think there are really useful things in having someone outside the mainstream medical system like to talk to about your health, to talk to about your experience of your health as a holistic thing, and if you have the money to spend on that, maybe that's great, but we cannot be okay with replacing real medical care, regulated medical care, with supplements from the Tiktok shop. Yeah. And ultimately, Tiktok is a commerce platform, and we all need to remember that. So you are being sold supplements for your period pain. You are being sold a coaching system for your period pain. And we all need to be very media savvy. We all need to be very aware of how our attention is being used as a commodity, and we need to be very clear about what we want to get out of a session on Tiktok or Googling something, because Google is just as big a part of this too, like Google is not trying to get you the best answers. Google is trying to sell ad space and sell search results and now give you AI so like we all need to protect ourselves and be very educated and very clear on what we are looking at and what we are looking for.
Anita Rao
Hearing you say this reminds me of a quote from your podcast series that honestly gave me chills, and I wrote it in my notes app, because I was just like, I can't believe this quote. Oh, I made it to your notes I made it to my notes app. And it was a president of the Society for women's health research, and she said, if you're not at the table, you're on the menu. Yeah, and I want you it. In light of everything that we have talked about, share how that quote kind of lands with you at this moment of your own health journey and your research journey,
Kate Downey
To me, that is very connected to a thought I've been having throughout this podcast series that is who is actually benefiting from us not talking and not sharing information and experiences. And it's easy to say, like, oh, the patriarchy is benefiting, but like, actually nobody's benefiting, because when we actually didn't have time to get into this on the podcast. But there are economic effects of this much Period Pain happening and being untreated. This actually hasn't been studied very well in the US, but Australia has done some really great studies on the economic effect of period pain. They estimate in just Australia, that the number of people who have to call out of work for period pain, the number of people who are unable to care for their kids or, you know, participate in the economy each year is costing the Australian economy $9 billion and the Australian economy is not as big as the US economy. Wow, yeah. So there is literally no downside to learning more about what are the causes of period pain. How can we better treat this? How can we make this not interrupt the lives of so many people? And the fact that we're not getting into this, the fact that we're not dealing with this issue is sexism, like plain and simple, it is not by any one person, but in our culture as a whole. And that's really hard to fix or root out or chase down. But the good thing is that it's also really easy to combat, because all you have to do is talk about it, invite your friends over. Have I just had my first like, I called it a period Yap session. You can call it whatever you want. I had a bunch of my friends with uteruses over. We drank wine, had snacks, and we all just went around and talked about what we were dealing with, medically, experientially, some of my friends are going through perimenopause. Some of my friends are dealing with trying to get pregnant or being postpartum. Some of my friends are dealing with ovarian cysts, PCOS, trying to get off birth control, having a really hard time with it, trying to get an IUD and not being able to find a place that will do it with anesthesia. And by the end of this two hour little chat I hosted, people were sharing information with each other. One person was sharing where in LA they got their IUD inserted with anesthesia. People were sharing gynecologists that they had had really good experiences with pelvic floor therapy experiences and practitioners who had been really helpful to them, so just literally one two hour conversation with about 10 people made a measurable difference in the lives and health of the people there, like someone is going to get care that they wouldn't otherwise have been able to get because they came over to my house and had a glass of Wine and chatted with a bunch of other people about their periods. So that's easy, like, that's an easy thing to host and do, and it may feel weird to invite people to that, but it might not feel weird, and you might wonder why you hadn't been doing this the whole time.
Anita Rao
You can find out more about Kate and our podcast cramped at our website, embodiedwunc.org. You can find all episodes of embodied the radio show there and subscribe to our weekly podcast. Today's episode was produced by Kaia Findlay and edited by Wilson Sayre. Nina Scott is our intern, Jenni Lawson, our technical director, Amanda Magnus is our regular editor, and Quilla wrote our theme music. This program is recorded at the American Tobacco Historic District. North Carolina Public Radio is a broadcast service of the University of North Carolina at Chapel Hill. I'm Anita Rao.