The August 18, 2021, episode of Vox Media’s Unexplainable podcast is called “The Mystery of Endometriosis” and features the voices of 14 people discussing their experience with the disease. They share their earliest memories of the condition, the difficulties they had being diagnosed, their frustration when they realized that there was no cure (and, for some, no good treatment options), and the need for more research and funding.

CGR Director Linda Griffith is one of the voices in the podcast. The second half of the episode features a spotlight on Dr. Griffith’s work and the importance of having someone like her – with both personal and academic experience with the disease – in a position to research it. It cites her work to change the definition of endometriosis from “benign” to “common and morbid” as just one example of the ways she can use her breadth of experience to affect change.

8.18.21 The mysteries of endometriosis

        [THEME]

NOAM HASSENFELD (HOST): It’s Unexplainable, I’m Noam Hassenfeld, and this week we’ve got an episode from our reporter, Byrd Pinkerton. 

BYRD PINKERTON (REPORTER): Hello.

NOAM: And Byrd. You’ve been working on this for a really long time, right?  

BYRD: Yeah. So earlier this year, I started reading up on this condition called endometriosis, which is basically just that tissue that’s normally inside of a person’s uterus starts growing in other parts of the body, so like the intestines or on the ovaries, and it can start causing pretty serious problems, sometimes. The numbers aren’t perfect. But what we do know is that it can affect up to one in ten women of childbearing age. And potentially more people who don’t identify as women. For some people, it’s completely devastating. Some people don’t feel any pain at all. And so I did this callout basically asking listeners to tell us about their experiences with endometriosis. And we just got like this outpouring of responses. 

NOAM: Yeah.

BYRD: There were descriptions of physical pain. There were descriptions of mental pain, including thoughts of suicide. So listeners should just know that this could be a difficult episode to listen to. 

NOAM: Right.

BYRD: But I think overall, what I just kept hearing from people was this frustration at how many unknowns there are about this condition. So what I want to do now is just let the people who experience this condition explain what endometriosis is and what it’s done to their lives.

SCORING – PAIN IS THE AIR

BONTLE MOABI: So I started my period at about 11, 12. 

CESCA CABALLERO: 10 years old

MAYA: 13

SOPHIE COONEY: 14

MAYA: And immediately had really, really painful periods.

SOPHIE: I thought I was dying. 

CASIDY CAMPBELL: My cramps came on and I couldn’t move and I was sweating. 

REBECCA: In the bathroom stall just like bowled over in pain

KALEIGH O’KEEFE: Curled up in the fetal position  

CASIDY: Throwing up. 

LIZ VOLUZ: The pain was so bad, I passed out

JENNIFER KAUSE: Just constant, like pounding and like stabbing in your ovaries.

SOPHIE: I just wasn’t coping. I couldn’t get out of bed without fainting. When it came, I just would be completely, you know, like a sickly Victorian child.  

REBECCA: It was painful, both physically and mentally, because, you know, I was a kid. I didn’t know what was happening.

MISAKO YAMAZAKI: So like any person with a cell phone and access to the internet, reading up on what could be wrong with me sent me into spirals.

JENNIFER: I remember going to an O.B. 

MISAKO: I went to a gynecologist. And she said to me, “Well, have you thought about losing weight?” And I was like, ‘Oh ok, here we go.”

SOPHIE: And I can’t tell if they meant it to be helpful, but they would say things like, well, you know, some people just have a bit of a low pain threshold.

KALEIGH: The E.R. doctor flat out said to me and my mother, like, “I think your child is lying to get drugs.”

LIZ: Take Advil or take Motrin and and deal with it.

KALEIGH: But I think a lot of that had to do with the fact that they saw me, I mean, I’m transgender, I don’t see myself this way, but they saw me as a teenage girl who was being dramatic, who was overreacting.

REBECCA: That plus the institutionalized and internalized racism throughout the medical field is a thing. It is real.

CASIDY: Oh, one thousand per cent

LINDA GRIFFITH (PROFESSOR): The ways to diagnose it are you have to have surgery, pretty much. I mean, you can infer things from imaging. But there’s no diagnosis that’s definitive that doesn’t involve surgery.

CLAIRE RYAN: And I had to have all kinds of people pushing and probing and trying to figure out whether everything was in the right place in there. Ultrasounds. I mean, there’s lots of different procedures I went through before they would allow the one that finally diagnosed me.

LINDA: And the doctor came in and told me that I had and had something called endometriosis.

CLAIRE: And I’m like Endo whaaa? 

SCORING OUT

REBECCA: So …

KALEIGH: During the second half of your menstrual cycle, the endometrium, which is the lining of the uterus, starts growing and it becomes, like, thick and spongy. Your ovary has released an egg. If you don’t get pregnant, then instead what happens is the hormones trigger the endometrium to then shed from the uterus with cramping. That’s an average cycle for most people. When you have endometriosis, tissue that is similar to that tissue of the endometrium but is not exactly the same is found outside the uterus. And it can be found anywhere outside the uterus.

COURTNEY MITTELSTAEDT: And because women go through cycles where basically the lining of your uterus will, like, build up and then go down, it does that, but outside of my uterus and so like with my period when hormones go up and cause it to like, build up and slough off, which I hate that word, but it’s the technical word sloughing. It does that outside of my uterus. And so it causes like the rest of me to experience weird stuff, basically. 

LINDA: And it’s often gradually getting worse and worse and worse. And that typically is because you have scar tissue gluing your internal organs together. And when your organs are stuck together, then there’s often nerves that get pulled. So the symptoms tremendously vary from patient to patient. And some patients have very little pain actually, with even a lot of disease. So we don’t really understand the relationship between the appearance of endometriosis and the symptoms that accompany it.

KALEIGH: The average statistic that always gets thrown around is it takes like eight to twelve years for, like, a woman to get diagnosed with endo. It takes longer, even more years for a black woman to get diagnosed with endo. But I don’t even think there’s statistics about how long it takes for transgender people to get diagnosed. It took me 17 years. At that moment when he said, “you have endo,” honestly, it was like… very conflicting feelings because it was so good to be… I’m going to get emotional. It was so good to hear someone say that and to be validated that like, no, it’s not normal to be in pain all of the time. 

SCORING – THERE’S NO CURE

SOPHIE: You know, it was just the first time I didn’t feel like I’d been dismissed.

MISAKO: But it did take a while for me to accept that this is going to be with me for the rest of my life. There’s no cure.

SCORING BUMP

LINDA: Then you go into a life of what’s going to happen next. 

JENNIFER: In high school, there were days where I would just have to skip days because I just couldn’t go to school. 

CLAIRE: You know, I’ve been at work. I’ve been all kinds of places where it’s not convenient to just suddenly be very ill.

SOPHIE: Or if you were going out, trying to plan an outfit and saying, well, I’m going to wear shorts under my dress because my period’s due, and if it comes, it will be like that scene in The Shining and when the lift doors open, just on the dance floor.

JENNY GURVICH: The day I got married, the day that was supposed to be one of the happiest days of my life, I was in pain that entire day.

SOPHIE: It’s had a big impact, I think, on how I feel about sex, how comfortable I feel in my own body. I don’t feel sexy because I just… I’m like ugh, don’t touch it because it’s so painful, which has been difficult because for the past like two, over two years I’ve been in a relationship and we just have not been able to have that intimacy really at all

KALEIGH: The doctors say, like, “Use more lube,” and like, you know, “foreplay,” and I’m like, “Yeah, I’m I’m gay. I know what foreplay is.”

CESCA: The doctor said that they’ll have to assess the risks of, you know, of conceiving a baby. 

MAYA: And we won’t know if your womb is an inhabitable place. for an embryo until we try. It was really hard.

JENNY: It’s just so, so, so, soul crushing to just live in this body day in and day out.

LINDA: A lot of patients cycle through a lot of therapies and don’t get better. And this is very frustrating.

SCORING SHIFT

MISAKO: It’s so frustrating because it’s like, well, then, “Shit, what do I do? What, what, what’s the next option?”

CASIDY: And it’s wild to me that in 2021 we still don’t have enough technology or research done or funding behind all of this to actually help people with uteruses who are suffering like this.

JENNY: I would love to say that there will be either a cure or we just know where it comes from and how to treat it. But I am not confident about it at all  

LINDA: There’s more unknown than there is known, I would say.

SCORING BUMP

BYRD: After the break, we’re going to talk about what we know about those unknowns… and some of the work that’s being done to get answers. But first, a poem from one of the fourteen people that you just heard from, Misako Yamazaki.

SCORING OUT

<TAPE> 

MISAKO: Take a knife, a sharp twig or an ice pick and stab it through your pelvis. 

Take a searing iron and press it against your lower back like this. 

Take handfuls of needles without thread and pierced them through your uterus. 

Take a mallet to your hips and upper thighs. 

When you bend over, use a hammer to crush below your lower spine hips as the stabs of pain makes walking home an unexpected game of how many steps can I take without feeling pain. Drum beats echo in your body, throbbing, shaking. 

Every movement hurts, even stillness hurts. 

But you continue to live in spite of endometriosis.  

     [MIDROLL]

     [BUMPER]

NOAM: Unexplainable, we’re back with reporter Byrd Pinkerton.  

BYRD: Hello. 

NOAM: And we’re gonna get into all of the unknowns that patients and scientists have with endometriosis. To start, though, Byrd, you mentioned that endometriosis affects something like one in 10 women. Was that the stat?  

BYRD: It’s almost the stat. 

NOAM: Ok

BYRD: So the research that we have suggests that this affects one in 10 women of childbearing age. But what that doesn’t include is people who don’t identify as women, for example, who experience this.

NOAM: Right.

BYRD: Or how many people experience it after menopause. 

NOAM: Huh

BYRD: But just overall, it means that millions of people are affected by this, even though caveat like not everyone who has endometriosis experiences the sort of like intense, debilitating pain that we heard about in the first half. 

NOAM: Hm. But if millions of people are experiencing endometriosis, I don’t know, how is it that I’ve never heard about this before? 

BYRD: I mean, part of the reason that people face gaslighting when they go in to the doctors and say, “I think I have this condition,” is that even doctors aren’t always properly educated about this. I think it’s also part of a larger problem, which is that endometriosis research is really underfunded, which is a trend with a lot of reproductive health diseases. It’s actually one of the reasons that there are just so many unknowns around it. 

NOAM: What is the actual extent of the unknowns here?

BYRD: I think it sort of divides into two big buckets. So bucket number one is the the causes of endometriosis. There are a lot of theories about what actually causes it. So there’s sort of theories that it’s genetic, that there are environmental factors involved, but we don’t have concrete answers about why endometriosis is happening. And that kind of leads to bucket number two of problems, which is, treatments, because it’s really hard to treat something if you don’t really know what causes it. 

NOAM: What are the best treatments we have now? I mean, yeah, given that we have no idea what causes endometriosis, what kind of treatments are available?

BYRD: Yeah, I mean, I’m not laughing because it’s funny, but literally just because it’s such a mess. And honestly like that is the sentiment I heard over and over again.  

<TAPE> SOPHIE: I feel like I have to laugh or I’ll cry, so I’ll choose laughing.

BYRD: So yeah. I mean, I was talking to, again, like these 14 different people, and I cannot emphasize enough how much of a mixed bag it was.

SCORING – A MIXED BAG

BYRD: So there are people for whom, for example, birth control can be really effective.

<TAPE> REBECCA: I was so relieved. I just remember feeling so intensely grateful I could finally live a life where I wasn’t held down by this debilitatingly painful condition. 

BYRD: So it works because your reproductive cycle is linked to the flow of hormones increasing and decreasing over the course of the month. Right. And that applies to your endometrium tissue too. It’s growing and shrinking because of those hormones. And one of the things that birth control does is it changes or it even can cut off the sort of flow of those hormones that are going through your body. So for some people I talked to, birth control works. The prescribed doses can be really large.

<TAPE> MAYA: For me, I take, each pill is approximately a pack of birth control. It’s a lot lot of hormones. 

BYRD: There are other people who are sort of like, “Well, it did help with regulating my period.

<TAPE> COURTNEY: I’m having regular periods, they’re so much lighter. They were still really painful. That’s the one thing is the pain was still there

BYRD: And then there are a lot of people who told me that it didn’t help them at all.  

<TAPE> JENNIFER: Then they’re like, oh, you have to do the three months to, like, see if it works and then it doesn’t. And then I have to try another one.  

BYRD: There can also be really serious side effects. 

<TAPE> LINDA: Certain formulations of the birth control pill at different times of your life can make you depressed. I got so depressed once I actually went to a gun store and looked at guns.

NOAM: Wow.

BYRD: So obviously, those kinds of thoughts are not going to happen to every person who takes every type of birth control.

NOAM: Mhmm yeah

BYRD: But it does mean that cycling through these different options can take a pretty serious toll, especially if all that cycling doesn’t eventually lead to a good option that actually helps someone.

SCORING OUT

NOAM: Are there any other options? Is there anything else people can do?  

BYRD: Yeah. So there is a maybe more targeted approach that is much more expensive, which is surgery.

NOAM: What kind of surgery?

BYRD: Well, nowadays there are two kind of main types of surgery for this. There’s ablation which is like burning off endometrial tissue and these lesions that kind of create endometrial tissue And then there’s excision, which is kind of cutting those things out.  

<TAPE> JENNY: If you have excision surgery, which is the gold standard of, you know, endometriosis car and you can afford it, generally recurrence is rare. But I’ve had multiple and I will probably have more.

BYRD: In both of these kinds of surgery, the tissue can grow back. 

<TAPE> LIZ: After the third one, I just resolved myself to deal with the pain .

NOAM: What about a hysterectomy, like, just take the entire uterus out? Would that solve it?

<TAPE> MISAKO: It’s funny you bring that up, because I actually have been asking for a total hysterectomy from my surgeons and they keep saying no because I’m too young and apparently I don’t know what I want, even though I’m twenty four. Sorry, I’m really bitter about that.

BYRD: I definitely talked to people who said I’d love to take it all out. But that does generally mean, especially if you’re very young, that you’re going to have to spend your life on kind of pretty intense hormone therapy. And taking out your uterus, a hysterectomy isn’t necessarily going to fix the problem because the whole issue with endometriosis is that you have these tissues growing in your intestinal area, for example, or like elsewhere in your pelvis or even higher up in the body. Like there are people who have it in their chest. They are even rare occurrences of it being in people’s noses. 

NOAM: Huh

BYRD: So they get like nosebleeds on their period. 

NOAM: Wow. So just not connected to the uterus at all?

BYRD: Right, exactly. So, like, the hysterectomy could prevent you from from having your period. Right. But but that doesn’t mean that these tissues aren’t going to grow and cause you pain, which could be part of the reason that some people who go through menopause, for example, still experience endometriosis pain.

NOAM: Ok, so if what sounds like, you know, the most drastic possible solution of removing your entire uterus and then going on hormones with these side effects, if that solution isn’t guaranteed to work, what are people supposed to do here? 

BYRD: I mean, It’s just really frustrating. They don’t have answers for what they’re supposed to do here. And I think really the only answer is that researchers need more funding to to try and get answers. 

<CLIP> HOUSE SPEAKER: From Iowa, Ms. Finkenauer is recognized for 60 minutes as the designee of the Majority Leader…

BYRD: Last year, this Iowa Congresswoman–

<CLIP> ABBY FINKENAUER: Congresswoman Abby Finkenauer.

BYRD: She shared her really personal experiences with endometriosis. 

<CLIP> FINKENAUER: It was a pain familiar to me, stabbing in my lower left abdomen and a tight pain like two fists clenched together in a vise grip in my lower back.  

BYRD: And through her efforts, Congress ended up doubling its funding for endometriosis research.

<CLIP> FINKENAUER: We’re going to raise awareness with the public and in Congress to get more funding and the kind of support that this disease deserves.  

BYRD: And that’s actually good news for for specifically one of the 14 endometriosis patients that we heard from earlier, because she’s she’s actually doing that research. 

<TAPE> LINDA GRIFFITH (PROFESSOR): I’m Professor Linda Griffith. And I teach biological and mechanical engineering at the Massachusetts Institute of Technology.

BYRD: She’s had this very long, storied career. She worked on the mouse with the ear growing out of its back. Do you know what I’m talking about? 

NOAM: Yeah, yeah. The human ear on the mouse’s back. I remember that.

BYRD: So Linda was involved with that. She’s done a lot of work with 3D tissue printing. It’s kind of cool. And in 2009, she decided, look, I have endometriosis. I want to do something about it. And she started this center for gynopathological research. So basically research into problems with reproductive issues.

<TAPE> LINDA: We just kind of felt like we’re this team, we’re forging ahead, let’s see what we can do. 

BYRD: So one of the things they decide they can do is they start building these these tiny models of endometrial lesions.

NOAM: Those are sort of the the things that are caused by endometriosis, the lesions that doctors are removing in the surgery?

BYRD: Yeah, exactly. People go in for surgery, they have these lesions burned or cut out, but then the lesions end up coming back.

<TAPE> LINDA: We don’t know exactly why it is. But a hypothesis is there’s little tiny lesions that are not being taken out and they’re all over the place. So we wanted to build models of little tiny lesions, smaller, you know, millimeter or so. So I’m building the lesions so I can see what in the heck is going on in those lesions. 

BYRD: So these tiny models are going to let Linda study how they respond to hormones and how they use those hormones to grow back after surgeries. And then she’s also working on a project that will hopefully kind of systematize the treatment of endometriosis. So, like, right now, treating Endo is like throwing spaghetti at the wall. It’s just like let’s put patients on different birth controls until something sticks. But Linda, she really wants to break endometriosis into different categories or types, kind of like there are different types of breast cancer, for example, in the hopes that that will help make treatments more targeted.

NOAM: What’s her plan to categorize it if we don’t know all that much about endometriosis to begin with?

BYRD: Yeah, so it’s actually super cool.

<TAPE> LINDA: We used a kind of math that Netflix uses to predict what you should watch on your Netflix shows. 

BYRD: Instead of looking for patterns in movie watching, she’s using these algorithms to look for patterns in the proteins and cells of the abdominal fluid of endometriosis patients.

NOAM: Ok, like machine learning kind of stuff. 

BYRD: Right. So the hope is that they can say, “All right, we found these patterns. We found this sort of like constellation of proteins acting in this way. We’re going to name this like endometriosis type one or type two,” or whatever, and then they can develop down the line treatments for type one versus type two. 

NOAM: Ok, so Linda has this start on breaking endometriosis down into these categories. She’s got these models of lesions she’s building that might allow for more targeted treatment. 

BYRD: Yeah, so so Linda still has, like a lot of work to do, right, but she’s she’s put in the hours and even like a few decades ago, I’m not sure that that would have been the case. Right. So Linda told me that when she first started her career back in the 1990s, she wasn’t even comfortable talking about endometriosis at work.

<TAPE> LINDA: You didn’t talk about your period. You just didn’t talk about that stuff then.

BYRD: And so if she felt like it was taboo to talk about, she wasn’t necessarily going to dive headfirst into researching it.

NOAM: Right. 

BYRD: But eventually, attitudes around that stuff, she felt that she was sort of seeing them start to change. She also got tenure, so she could basically do whatever she wanted. But even now, as she works with sort of people and doctors who are genuinely really invested in working on endometriosis, Linda has noticed language barriers and problems. So there’s this surgeon for example that she works with.  He’s the codirector of the center. He’s a great collaborator. She really likes him. But he would always refer to endometriosis as a benign disease.  

<TAPE> ​​LINDA: And I was very offended by this. I said, you know, “It’s not a benign disease.” And he says “Oh, you know, it’s a medical term.” And I’m like, “I don’t care. You know, I’m your patient and I’m hearing what you’re saying and you’re a human. And that word carries a meaning. And I understand in a pathology report it means one thing, but outside the pathology report, it has no business in any of our discussions.”

BYRD: So she starts lobbying to have this wording changed. She has in her email signature. Actually. Wait, let me… So it goes… You know, Linda Griffith dadada, professor of biological and mechanical engineering, like her contact info and then it says, “Please don’t refer to endometriosis, adenomyosis or fibroids as benign diseases. They are not benign. They are common and morbid.”

<TAPE> ​​LINDA: So over the years, I became a real whiner about this. And I said, look, when you write an NIH grant, there’s a section called Significance. And if you write that you’re studying a benign disease, could this be why endometriosis doesn’t get so much funding? And eventually, because I got involved at very high levels at NIH and in professional communities, the main professional people in the field now accept that we call it common and morbid.

BYRD: So she’s effecting real change now. And I think what I really take away from from this story is that the more that you have people like Linda, people who have experience with endometriosis, both as a patient and as a researcher, sort of at the table advocating noticing things, noticing like small language tweaks that might have a really big impact. The more likely it is that we’re actually going to get to a place where, you know, in ten years I can come to you and say, “Noam, you know. The source of endometriosis is no longer a mystery.

NOAM: Mhmm

BYRD: “The treatments for endometriosis are no longer a mystery. And these patients who are living with this condition day in, day out and suffering from it, they no longer have just the sort of docket full of question marks in front of them.”

SCORING – PAIN IS THE AIR

<TAPE> KALEIGH: You think pain is a brick and I am a face, but that’s not it.  If pain is a brick, then it’s been pushed through my stomach. No pain is the force that pushed it.  No, I am the brick and pain is the clay I was forged from. Or pain is a mountain, and I am both Sisyphus and the Boulder. No, if pain is a mountain, then I’m the fucking mountain.  No, I am a lung and pain is the air. No, if pain is the air, then I am also the air and the air is alive and we feel… everything. 

SCORING BUMP

BYRD PINKERTON: That poem was written and read by Kaleigh O’Keefe. 

Thank you to them for sharing their story, thanks also to Linda Griffith, Misako Yamazaki, Bontle Moabi, Cesca Caballero, Maya, Rebecca, Casidy Campbell, Liz Voluz, Jennifer Kause, Courtney Mittelstaed, Claire Ryan, Sophie Cooney, and Jenny Gurvich. We couldn’t have made this without you.

This episode was reported and produced by me, Byrd Pinkerton. It was edited by Noam Hassenfeld and Meradith Hoddinott, with help from Brian Resnick and Jillian Weinberger. Noam composed the music and Cristian Ayala did the mix and sound design. Mandy Nguyen and Laura Bullard did our fact checking. Lauren Katz heads up our newsletter and Liz Kelly Nelson is the VP of Vox Audio.

If you want to read more about Linda Griffith and her work, Rachel Gross has a fantastic New York Times profile of her work that we’ll link to in our newsletter. You can sign up at vox dot com slash unexplainable, and please feel free to send any thoughts to unexplainable at vox dot com.