Transcript | Ep. 121: Diagnosis: Endometriosis

Shereen: I was working for NPR, and I was leaving the job to go take another job, and it was around 2005, and they give me like this going away party. And there was a card and one of my colleagues on the card said, “We're going to miss how Shereen blames literally everything on how bad her periods are.”

[Theme music]

Caroline: Hey y’all, and welcome to Unladylike. I’m Caroline.

Cristen: I’m Cristen. And that was Shereen Marisol Meraji you just heard. If her voice sounds familiar, it’s because she cohosts the acclaimed NPR podcast Code Switch, which is all about race, identity and culture. But today, Shereen’s here to talk periods. Bad periods.

Shereen: like we're talking crime scene in the bed, profusely bleeding and and and moodiness. I was incredibly moody.

Caroline: It wasn’t until she was 32 that Shereen discovered she didn’t just have “bad periods.” She had endometriosis.

Cristen: Endo-whatnow, you ask? Shereen hadn’t heard of it either before she was diagnosed. So, quick anatomy lesson. Endometrium is the tissue that lines the inside of the uterus. And over the course of the menstrual cycle, it thickens. And unless pregnancy happens, that thickened endometrium sheds and exits the body in the period flow.

Caroline: Endometriosis is a chronic disease where tissue that looks and acts like that endometrial tissue starts growing outside of the uterus. That runaway tissue often latches onto pelvic organs like the ovaries, fallopian tubes and bladder, but it can also migrate to your spinal nerves and even your lungs.

Cristen: And it affects way more than bad periods. Endometriosis can cause mood swings, chronic pain and — as Shereen is now intimately aware — endometriosis is the leading cause of infertility.

Caroline: Now, you wanna hear a staggering statistic, Cristen?

Cristen: Always.

Caroline: OK, well, for starters, endometriosis is SUPER common — like about 1 in 10 people with uteruses have it. But get this: It takes A DECADE, on average, to get a diagnosis.

Cristen: Oh good grief!

Caroline: Yeah, and even after you're diagnosed, getting treatment can be next to impossible

Shereen: I remember one conversation I had with a booker at a doctor's office, and she was like, well, you'd be number 80 on the waiting list.

Cristen: Oh, my God.

Shereen: And I was like I was like, so many women are suffering, so many women are suffering, and so few OBGYNs or GYNs specialize in this and know about this and treat this. And when you're looking for somebody and you're looking for help, it's - it's really hard to find and it takes forever to find it.

Caroline: Someone working to alleviate some of that suffering is our second guest and student scientist Meghan Martin — who we spoke to over Zoom.

Meghan: People don't actually know how endometriosis becomes endometriosis. Some theory is that it's backflow from menstruation. But we don't know. There's not enough research. People haven't only recently have been really focusing on figuring out, OK, what's how does this work? And it's a very complicated, misunderstood disease.

Cristen: Meghan is a recent biology graduate of University of Rochester. Later, we'll talk to her about how living with endometriosis inspired her to develop a game-changing tool that could make getting diagnosed a lot faster and easier.

Caroline: It’s all to find out why sometimes, yes, you can blame literally everything on bad periods.

[Stinger]

Caroline: Shereen first got her period in middle school, and it was awful from the jump: Terrible pain. Awful mood swings. They were so debilitating, Shereen would have to call out sick from school.

Shereen: My mom was always like, oh, it's just because you don't want to go to school. And I would be like, no, because my stomach hurts. And that's how I talked about it. My stomach hurts. My stomach really hurts.

Cristen: 'My stomach hurts' is as much detail as Shereen would go into with her parents.

Shereen: We did not talk about this stuff in my family. My dad is an immigrant from Iran. And I did not talk about any of this stuff with him. And my mom grew up incredibly Catholic. She's from Puerto Rico. And we just didn't talk about this. We didn't talk about sex. We didn't talk about anything gynecological. We didn't talk about periods. You know, when I had my period, she kind of threw a pack of um Kotex. I have, like, remember the brand. Kotex pads at me and was like, yeah, you know, you stick these in your underwear. And like that was the talk.

Caroline: Shereen figured her physical symptoms were just normal period stuff. Periods were supposed to be the WORST. But the intense mood swings were harder to explain away.

Shereen: I honestly thought that I had bipolar disorder or something. As long as I can remember I have two weeks of the month where I feel in my body like myself, grounded in who I am and two weeks of the month where I don't recognize the person that I have become. And it's mental, it's mood. It's like this Dr. Jekyll / Mr. Hyde situation And, I mean, it’s not evil, I'm like, I'm not mean. I'm just incredibly depressed. I mean, depressed to the point where I have suicidal thoughts. And I'm not - this is not hyperbole. It's just this intense depression and anxiety. And it's like clockwork.

Cristen: Then, when Shereen was 32, shit hit the fan.

Shereen: I was at my boyfriend's house at the time, and I was in bed and my stomach was killing me. I wasn't on my period though, so I thought, maybe I'm having an appendicitis. Something is definitely wrong, and the pain was just absolutely unbearable.

Caroline: Shereen decided to go to urgent care. The doctor on call began prepping her for a vaginal ultrasound.

Shereen: And I was like, why are you doing that for an appendicitis? But - or what I thought was an appendicitis. And she thought it was something else. And she said, “You have endometriosis. I can see it.” And I was like, well, what is endometriosis? And she explained that it was your uterine lining, your endometrium growing all over my bowels at the time, and she could see it on my ovaries, actually, cysts on my ovaries, and she explained that to me, and she's like, we think that there's pain because it bleeds every month, but it also causes scar tissue. And from what she could see, she said it was looking fairly bad.

Cristen: The urgent care doctor told Shereen that the only way to get diagnosed required laparoscopic surgery. That’s when they make a tiny hole in your belly button and stick a tiny camera down into your abdomen. Then, the doctor will remove the runaway endometrial tissue as needed.

Caroline: Shereen found a doctor who not only specializes in endometriosis, but who also took her insurance, Dr. Thaïs Aliabadi.

Shereen: She also did an ultrasound and saw whatever the doctor in urgent care saw, and she seemed quite taken aback by what she saw, and so she was like, “We need to book you for surgery right away,” and you know, they do this like intensive questionnaire: What are your symptoms, your pain? Do you have pain when you're having sex? Like there's all of these questions that they ask you. And I was like, yes, yes, yes to to all of the questions. And she's like. You definitely have it from what I'm seeing from this perspective, from this ultrasound. It doesn't look good. We won't know until we do the laparoscopic surgery just how bad it is.

Caroline: Shereen booked the surgery. Dr. Aliabadi couldn't cut away all the tissue growing on Shereen's bowels. BUT she WAS able to remove the endometrium on her ovaries and make sure Shereen's fallopian tubes were intact.

Cristen: By this point, Shereen had been living with the pain of undiagnosed endometriosis for more than 15 years.

Shereen: She said to me afterwards, this was horrible. First of all, number one, this was horrible. Number two, there's no way that you were not in tremendous amounts of pain for many, many years. And she said to me, I can't believe — I'm going to cry. Sorry. — She said to me, I can't believe that you lived like this for so long. And for me it was like, oh man, I just felt like someone saw me and saw how much I had been suffering. And she's she's just like, I'm amazed that I am just now seeing you, it's basically what she said because it was really bad and “I'm just amazed that you were living like this for as long as you were.” And she said to me, “I am - I need to tell you, this issue that you have is going to damage your fertility. It's going to be very, very difficult for you to have children.”

Caroline: Since endometriosis can affect the ovaries and egg quality, Dr. Aliabadi advised Shereen to freeze her eggs.

Cristen: At the time, Shereen was working at a public radio job and wasn’t making much money. Egg freezing wasn’t covered by insurance, and there was no way that Shereen could afford the $10,000 to 15,000 dollars needed to harvest her eggs.

Shereen: Dr. Aliabadi said to me, “Well ask your parents for a loan, ask your parents to help you pay for this. They are going to want grandchildren. Tell them if they want grandchildren, they have to support you in this.” And honestly, I couldn't do it. I just couldn't ask my parents to. First of all, I knew my parents didn't have $10,000 laying around. They - they probably could have figured out how to do it. And now looking back, I'm sure they would have done it for me. But I just didn't feel comfortable asking my parents for that kind of help. And I didn't have the money, and I didn't feel like, oh, this is what I want to put on my credit card. So I did not freeze my eggs. I did not listen, and I did not freeze my eggs. And I hugely, hugely regret that.

Caroline: After that initial surgery, Dr. Aliabadi wanted to figure out a treatment plan that could help prevent future endometrium growth.

Shereen: She did all of this work to fix what was going on and fix my organs, that she wanted to make sure that I wasn't having my period because that's what messes it up, like you have your period and then the endometrial lining starts growing all over everything else and it happens again and again. So it's really about suppressing your period and making sure that this stuff doesn't grow out of control again.

Cristen: Dr. Aliabadi first recommended that Shereen take a drug to simulate menopause. It was an aggressive approach, and Shereen was too wary of the potential side effects.

Caroline: Shereen’s other option was to go on the pill and just not take that week of placebo pills, so that she wouldn’t get her period.

Shereen: And I said ding ding I'll do that. I'm good with that. Like I know the birth control pill works for me and so that's what we did in order to make sure that all of that good work that she did would stay and the endometriosis wouldn't grow out of control again. And so I did that and that, and that really, really did work for me. But then I met somebody who I got married to - or - and this was even before we got married. And I was very honest with him. I was like, hey, I was told my fertility is going to be crap, so maybe we should try working on this even before we get married. And so I stopped taking the pill, and that's when all hell broke loose in my gynecological regions. And I don't think that's the scientific term for that.

Caroline: We’re going to take a quick break.

Cristen: When we come back, Shereen tries getting pregnant, despite all hell breaking loose in her gynecological regions. Plus, she shares how endometriosis has affected her marriage.

Caroline: Stick around.

[Stinger]

Cristen: We’re back with Shereen Marisol Meraji. When we left off, Shereen and her husband were trying to get pregnant … to no avail.

Caroline: Dr. Aliabadii had warned Shereen that having a baby would be difficult. And for good reason. Infertility affects up to half of people with endometriosis.

Cristen: But Shereen had decided to take her chances anyway. She was off birth control, on IVF and her endometriosis was going haywire.

Shereen: And I was already just miserable again. I mean, all the things that I've talked about before were happening again: the mood swings, the depression, the horrible, horrible, horrible, pain and also bloating. All of those things were in full effect. And every single time I would go into the IVF doctor, it would be just messier in there. There was like this huge endometrioma that was on one of my ovaries and they would be like, oh, we can't see what's going on. And then months later, there was a fibroid, and then it kept growing bigger and bigger and bigger and basically a year into IVF and trying IVF and my egg, my follicle numbers just dropping and dropping and dropping. I was like, “Hey, you know, I do have this thing called endometriosis, which I told you all that I had. Maybe it's just really bad right now and maybe we should do something about it.” And it was like, no, let's keep trying to harvest these embryos.

Cristen: For months, Shereen told her fertility doctors she probably needed surgery to remove the endometrium and the fibroid. Finally, they listened, and she got the go-ahead.

Shereen: I was like, thank God, because I'm in absolute hell right now. And so she's like, “Here's a doctor that your insurance covers that we really like, who's a specialist in endometriosis.” And that doctor didn't have a consultation appointment for months. And so I was like I can’t wait. Now that I’ve gotten the OK from my fertility doctors I just want to get this done now. And so I called every freaking specialist that was covered by my insurance, and it was the same thing.

Caroline: Shereen looked up Dr. Aliabadi, who’d done her original surgery. She didn’t take insurance anymore, but Shereen was desperate.

Shereen: I called Dr. Aliabadi again and I went in to see her and I was like you were right about everything. And I should have listened to you about freezing the eggs. And I didn't listen to you about freezing the eggs. And I think she took some pity on me because I don't feel like she charged me for everything that she did in that surgery, which was a very long surgery.

Cristen: When we talked to Shereen, she’d just had that surgery a few weeks earlier. And even with that possible discount, it. was. expensive. $30K expensive. It wiped Shereen’s entire savings account.

Caroline: After the procedure, Dr. Aliabadi sat Shereen down for an update.

Shereen: And once again, she was like, “Oh, Shereen.” And she was like, “Shereen Joon.” She's Persian. She was like, “Shereen Joon, I cannot believe it took you this long to deal with this again,” like, you know. And but she fixed me, hopefully. But one beautiful thing is she said, “You're going to be able to carry, like your uterus is beautiful,” which is beautiful to hear. And she said, “You're going to be able to carry.” She's like, “I don't know if you're going to be able to use your own eggs” because it got so out of hand that she really thinks it hurt my egg quality quite a bit that I let it get - I didn't let it. I think I was following doctor's orders, but because it grew so out of hand, she really thinks that it affected my egg quality. So she doesn't think that I'll be able to get pregnant with my own egg. But she does think I could carry if - if that was something that I wanted to do.

Caroline: Well how did - like over the course of being with your husband and talking about kids and how you wanted to build a family, how have your ideas about having that family, building it, shaping it, changed and evolved through this process?

Shereen: Even though I was told that it would be difficult a decade ago, I had not internalized that, I just thought, it’ll be fine, you know? I know that they said it was going to be hard. I doubt it's going to be as hard as they said it was going to be. I was wrong about that. So for me, coming to the realization that this was going to be as hard as it has been, I am very, very open to other ways of creating a family. Honestly, I am very, very open to adoption especially. Foster to adopt is something that I'm really looking into. My husband, on the other hand, he is much more connected to wanting to have a child that has a connection to his genetics in some way, and he knows that he's going to be the only one in his family that will probably have children - in his immediate family. For me, my brother has two kids, two beautiful kids. I don't I don't care if my kids are genetically connected to me or, you know, in that way, like, I think that I can make that connection, have that connection with any child.

Cristen: Well, we've seen actually a number of studies about how endometriosis also affects partners' quality of life. And aside from fertility — if it is really possible to kind of disentangle the two —but how do you think endometriosis has affected your relationship dynamics and how y'all have navigated that?

Shereen: Well we have a code phrase. It's “Don't poke the bear.” And the code phrase comes out about 10 days before my period because I can already feel that I'm going to be reacting to things in a way that's just not normal, not normally how I react. It's just much more emotionally charged. But I think it's been hard for him. It's hard to see the person that you love change so drastically within a matter of weeks, and and that happens every single month, and I think we've been married almost five years now, and so he is getting more used to it. It has been hard. And I want to give him props because he's a really wonderful human being, and he's he's been trying to work with me and really trying not to poke the bear.

Cristen: Well, what has been the most surprising part of your this whole journey that you've been on with endometriosis, if you had to pick one?

Shereen: OK, well, I think OK, can I talk about this without getting emotional? That is the that is the thing. OK. I think that the most surprising thing for me about this whole journey is like how good, how amazing, how vindicated, how justified I felt when I got the diagnosis. you know, I always felt like I had to work three times harder. All of those things that you hear when you're a little girl of color and your parents are like, you're a little girl and you're Latina. My mom was always like, you're Latina and you're going to have to work harder than everybody else to prove that you're just as good as everybody else. And so you're doing that at the same time that you have this thing that is kind of ruining your frickin life and you're an emotional wreck, but you're trying not to be because you don't want anyone to judge you any more than you feel like you're already being judged whether or not you are. But that was what I was thinking in my head. And so for me, that was the most surprising thing is just how good it made me feel to know what was wrong with me.

Caroline: We’re going to take a quick break.

Cristen: When we come back, we are talking to an unladylike genius who’s working to make endometriosis diagnoses a whole lot easier … although not a whole lot easier to say because, Caroline, “endometriosis diagnosis” … that’s a mouthful.

Caroline: Stick around

Cristen: Endometrioses diagnoses!

[Stinger]

Cristen: We’re back. Caroline, my favorite terrible fact about the medical history of endometriosis is that it used to be called the "career woman's disease.”

Caroline: Yep!

Cristen: Doctors legit believed that endometriosis only affected ambitious white women with type-A personalities. SERIOUSLY. One 1979 study noted that endometriosis patients “are usually well dressed and have trim figures.”

Caroline: Of course, all of that is total bullshit. But that whole nickname originated because typically it was only rich white women who had access to private healthcare — and who were pushing their doctors for treatment.

Cristen: And still today, a lot of the research on the disease is driven by patients who are fed up with suffering in silence. Patients like our next guest, Meghan Martin.

Caroline: Meghan is a recent graduate of the University of Rochester. She was diagnosed with endometriosis her senior year of high school. But the path to getting that diagnosis was bumpy. Like Shereen, Megan experienced debilitating nausea and chronic pain. But she didn’t think anything was seriously wrong.

Meghan: At first I thought this was just like normal periods, that that's what people experienced.

Caroline: Meghan’s mom encouraged her to see a doctor to figure out what was happening. Meghan ended up having to see FOUR doctors.

Cristen: One reason she had to see SO many doctors is pain. Chronic pelvic pain is THE most common symptom of endometriosis — and doctors often just explaining it away as bad cramps

Meghan: They would say, oh, how bad can the pain really be if you ran eight miles today and then went to soccer practice.

Cristen: How did it feel in that moment for a doctor to suggest, like, how much pain could you really be in? I mean, you're doing all this other stuff.

Meghan: That was a really tough moment for me, especially because I really respect physicians. I want to be a physician myself and having that person in that position in that authority say that that wasn't as big of a deal as it was really made me doubt myself, I was not as confident with my pain. I started to think that at some point, oh, maybe I'm just being dramatic or. Just really focusing on it instead of focusing on other stuff that was going on around me.

Caroline: After some googling, Meghan’s mom suggested to her doctor that maybe Meghan should be tested for endometriosis. Lo and behold, the doctor listened! Meghan reluctantly went in for exploratory surgery, the same laparoscopic surgery that Shereen had — which, reminder, is the ONLY way to properly diagnose endometriosis.

Cristen: The surgery ended up being both diagnosis and treatment for Meghan. Her doctors found endometrium growing around the outside of her uterus and along the nerves in her back which explained why Meghan had also been suffering from chronic back pain.

Caroline: The good news is that the surgery worked, and Meghan put endometriosis out of her mind … until three years later, when she was in biology class at the University of Rochester. A professor told the students about an international research competition. The idea was that students would come up with ways to solve real-world problems using biology.

Cristen: Meghan immediately thought about endometriosis. She wondered if there was a better way to diagnose it than having to get that surgery. So, Meghan joined the team and pitched her idea.

Meghan: It's that real world problem that there can be science based solutions. So I did a bunch of reading on endometriosis, where the research was, and I saw that there is some recent identification of biomarkers.

Caroline: Sidenote for fellow non-scientists: A biomarker is just a fancy name for a different type of cell that can alert you to various health conditions. So for example, there are cells in period blood that can help doctors detect endometriosis. But researchers haven’t quite figured out the best way to test for those biomarker cells.

Cristen: That’s where Meghan’s team saw their opportunity. They designed a prototype for a biomarker test. It works kinda like an at-home pregnancy test. But instead of peeing on a stick, you dip the stick into a menstrual cup of period blood. If the stick changes color and shows a second line, then ding ding ding - you probably have endometriosis. No diagnostic surgery needed! The prototype is still in the development stages, and not for sale yet. But as Meghan says it could be a huge breakthrough.

Meghan: One of the benefits of having a test like that, and even say you don't have access to treatments, we we're talking to some physicians in rural areas and some patients like. So now that, you know, what do you do about it if you don't have access to either the surgery and if that's what you want or you lean towards a hormonal treatment. But regardless if you know that something's wrong, like having that physical indicator that something's wrong and it's not just in your head, that makes a difference for patients. So when I was struggling in high school, if I I thought a lot of it was in my head and I had a lot of self-doubt, insecurity surrounding it, but just knowing that something's wrong, I'm not being emotional. I'm not being dramatic, that they're. It's not in my head like the mental wellness around the disease, really, I think is a really big benefit of getting the earlier diagnostic. Even worst case scenario, you don't have a lot of access to treatment options.

Cristen: And I would also mention too that the more that you can narrow that diagnostic gap, like the less chance hopefully like the those cells have to, like, continue to grow outside of the uterus. Right.

Meghan: Yeah, definitely the earlier you catch it, the earlier you can get treatment, the less severe it is. So there's so many - so many benefits, I think, from getting an earlier diagnostic.

Cristen: Well, what do you wish that more people knew or understood about endometriosis?

Meghan: I want people to know that if you have period pains or symptoms that are interfering with your daily life, that is not normal. If you have to miss school or you can't do activities, you don't want to do activities because the pain is so bad, that is something to talk to your doctor about. And it's not being dramatic. It's taking care of yourself. And I think that's the biggest message that I want people to take away, is if you think something's wrong, you know, your body best being an advocate for yourself is so important and being persistent as an advocate for yourself and. Sharing that with others can really make a difference by just encouraging and being supportive of others instead of having that, instead of feeding into the stigma surrounding periods.

Caroline: I am so glad you are out there, Meghan.

Cristen: I know.

Caroline: I am so glad you. I just I hate it that the patients have to advocate for themselves. I hate that it takes endometriosis patients demanding better treatment options, but I am so glad that people like you are out there pushing for changes and improvements and making people listen to you. I’m just so glad.

Meghan: Thank you. I get so inspired by all the other patients that are really advocating and it just shows how resilient these women are and how just incredibly smart all these people are with all the research that's going on. And then being a part of it is just really. I'm grateful that I'm able to give back to other patients.

Caroline: Special thanks to ALL the listeners who’ve shared their endometriosis stories with us -- this episode is especially for y’all. You can find Shereen Marisol Meraji on Twitter @RadioMirage. Plus, big news for Shereen. It was just announced that she’s leaving Code Switch. Shereen will be a Nieman Fellow at Harvard and then she’s off to UC Berkeley to start a new position as associate professor of journalism. Meghan is applying to med school. Thank God. We can’t wait for you to be a doctor Meghan. We wish you all the best Shereen and Meghan!

Cristen: You can find us on instagram, facebook and Twitter @unladylikemedia. You can also support Cristen and me by joining our Patreon; you’ll get weekly ad-free bonus episodes including recent chats on birth control history, sex toys and mafia AND everything you never knew you wanted to know about Brazilian butt lifts! Head over to patreon.com/unladylikemedia.

Caroline: Nora Ritchie is the senior producer of Unladylike. Michele O’Brien is our associate producer. Gianna Palmer is our story editor. Shruti Marathe transcribes our tape. Our music is by Flamingo Shadow, Amit May Cohen and Sarah Tudzin. Mixing is by Andi Kristins. Sound design and additional music is by Casey Holford and Andi Kristins. Executive producers are Peter Clowney, Daisy Rosario and Unladylike Media.

Cristen: This podcast was created by your hosts, Cristen Conger

Caroline: And Caroline Ervin of Unladylike Media.

Cristen: Next week ...

Ashley Ford: For the first time in 12 years, I got to hug my dad. And it's like, if I think really hard, I can still remember what it felt like to see him and to sort of like, you know, run walk toward him because you can't just run across the room in jail, like in a prison. Like, you can't you cannot do that. But doing like this run walk toward him and realizing that, like. Oh, my God, like. Should I feel should this feel this good, like should this feel this safe to be hugged by my dad in the middle of a prison visiting room?

Caroline: We’re talking to Ashley C. Ford, author of the NYT bestselling memoir Somebody’s Daughter. We talk to Ashley about growing up with a father who was incarcerated, unlearning shame and coming into her own.

Cristen: Ashley is a gem of a human being so you don’t want to miss that episode! Make sure you’re subscribed to Unladylike. Find us in stitcher, spotify, apple podcasts or wherever you listen to podcasts.

Caroline: And remember, got a problem?

Cristen: Get Unladylike.