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Alison Stewart: This is All Of It. I'm Alison Stewart, live from the WNYC Studios in SoHo. Thank you for spending part of your day with us. Whether you're listening on the radio, whether you're live streaming, or on demand, I'm grateful you're here. On today's show we'll talk about the new text-based app Threads with the Washington Post Shira Ovide. We'll also learn about Barbara Butcher's career as a New York City death investigator. She's written a memoir. We'll speak with documentary filmmaker Shannon Cohn, who will discuss her new PBS film on the incredible struggles women with endometriosis face, getting treatment and the attention they need, and we'll take your calls. That's in about 30 minutes. That is our plan so let's get this started with another film about women and the subculture of southern sororities Bama Rush.

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Right now, there are thousands of young women preparing for an event next month that, for many, will be life-changing. Every August at the University of Alabama in Tuscaloosa, the focus turns to rushing sororities at the state's oldest public university. Greek life is vibrant at UA, and the process of applying is a culture all its own. One that became a national fixation when potential new members known as PNMs began posting their rush week outfits of the day on TikTok. If you search, you can see this. Take, for example, these four young women.

Nicole: Hi. My name is Nicole. This is sisterhood day two. Dress-altered state badge and necklace from Pi Phi. Shoes, Lena's. Hopefully, I didn't flash my cooter. Hair, curled. Jewelry, normal.

Alison: Hey, y'all. I'm Alison. Hair curled, earrings are from Shein. Rest of the earrings, wear them every day. Y'all know what's going on. Dress is Lena's. Necklace is Pi Phi. Name tag is Pi Phi. Shoes are Steve Madden.

Reagan: Hi, all. My name Reagan. My outfit's from Nicole. My badge, Pi Phi. My necklace, Pi Phi. My earrings, just normal. My hair, natural. My shoes are Shein.

Lena: Hi, my name Lena. My dress from Shein. My badge is from Pi Phi. My earrings are Chanel. Hair, Purr. Eyelashes from my mama.

Alison Stewart: I think Rachel was out the night before. Who are these college students devoting so much time and putting so much of themselves and their self-worth into acceptance at their dream house? The phenomenon led documentary filmmaker Rachel Fleit to think about some of the issues around this hardcore pursuit of Greek life. Feminism, belonging, beauty standards, and acceptance, touchpoints in her own life as a woman with Alopecia.

Fleit, who directed Introducing Selma Blair, about the actress's struggle with multiple sclerosis, put her filmmaker skills to work and followed four women as they pursued their sorority goals. The result was the film Bama Rush, which sparked a controversy on campus even before it was complete. Bama Rush is streaming now on Max, and Rachel Fleet joins me. Hi, Rachel.

Rachel: Hi, Alison. It's so nice to be here.

Alison Stewart: Listeners, we want to get you in this conversation. Did you join a sorority? What was the appeal of it for you? How did it help you develop? Or maybe you rushed a sorority and it didn't have a great experience. Tell us what didn't work for you. We are looking for sorority experiences. Our number is 212-433-9692, 212-433-WNYC. You can call us at that number and join us on the air, or you can send us a text message there, 212-433-9692, 212-433-WNYC. Also, our social media is available @AllOfItWNYC. We are looking for Sorors to give a call in and tell us what's important to them about being in a sorority, or if you rushed a sorority and it wasn't a great experience, we want to hear about that too. Rachel, what was your experience with the Greek system before this film?

Rachel: I wasn't in a sorority. I went to Ithaca College and was a theater major. I had no idea about the Greek system at all, but for years and years, I just was fascinated by it, and I always thought it would make a great documentary. When it went viral on TikTok in August of 2021, I knew that the University of Alabama would be the place to go down and take a magnifying glass to it.

Alison Stewart: As you started researching Greek life and the Greek system, what seemed unique about the University of Alabama's Greek system?

Rachel: Well, the stakes are just different in the South. In filmmaking, we often think about the stakes. At the University of Alabama, quick into my research, I realized that there's such a long tradition of the sorority system there. There's what we call legacies. That means your grandmother could have been in it, your mother was in it, and now you have the pressure to get into this certain sorority. It's really a very long-held tradition, and so young women are working very hard to get into the top-tier sororities at the school. I don't think it's the same in the northeast or on the coasts.

Alison Stewart: How did you approach these young women?

Rachel: We approached them in all different kinds of ways. We would meet them on campus once we were down there. We found them through social media. Now it's very popular once you get into your school to join the Bama 26 or Bama 25 social media accounts. We would just say, "Hey, we're making this documentary. It's going to be a 360-degree view of the experience of sorority life at the University of Alabama." But really what I wanted to get across to the young women that we were contacting is that this was a movie about what it means to be a young woman right now. I really wanted to use the sorority system at the University of Alabama to further explore that.

Alison Stewart: What were some of the questions that you wanted answered? What did you ask the young women?

Rachel: I wanted to know if the pressure of being a young woman was the same as it was when I went to college 20 years ago. I had a sneaking suspicion that some of the same issues that I faced two decades ago were still prevalent then add the pressure of social media to that. That was really what I was going for down there.

Alison Stewart: Why did the young women tell you they wanted to be a part of this? To have cameras follow them around during what is really an important time to them. You really get that sense of how much this means to these young women.

Rachel: Yes. We contacted over 500 young women in trying to develop our characters for this film, and we got so much resistance. There were so many young women who just said, "I'm so sorry, I'm not allowed to talk to you." I would say, "No, I'm a thoughtful, compassionate filmmaker. I want to talk about what it means to be a young woman right now." They'd say, "I'm so sorry, we're not allowed to speak with the media." But there were many young women who listened to me and trusted my vision. I think ultimately, they wanted to be seen, they wanted to be heard, and they went on the journey with us, and it was incredible.

Alison Stewart: Let's talk to Ariel calling in from Manhattan. Hi, Ariel. Thank you for calling All Of It. You're on the air.

Ariel: Hi. I just wanted to share my positive experience with Greek Life. I went to Arizona State and I got my first job from networking through my sorority. Super grateful, and now I'm able to work in Manhattan from that experience.

Alison Stewart: Why did you join in the very first place?

Ariel: It looked super fun. All the girls, they were all dressing up in the same outfits every day, and they all had the same backpacks, and it looked super fun. Everyone had a friend group so that's the initial reason.

Alison Stewart: Ariel, thanks for calling in. Rachel, what was a common theme among these young women of why they wanted to rush at the University of Alabama?

Rachel: The common theme really was all about belonging. Every single young woman I spoke to said, "I just want to make best friends. I just want to find a place where I can feel at home." That just became the emotional engine of the film was this idea of belonging and what we do to find community, really. At the University of Alabama, it's the Sorority system.

Alison Stewart: To give people a sense of context, how many women are involved in the rush process?

Rachel: It's a lot. I think the numbers were hovering around 2,500 during 2022, so quite a few.

Alison Stewart: What's expected of them in that week? What is supposed to happen?

Rachel: It's a series of parties, but they're not parties with alcohol. They're really like tea parties, I think but there's no tea served, just tiny water bottles, which you'll hear about in our film. They are to dress up in lovely dresses and high heels and have their hair done and their makeup done and their jewelry on. They are to have small talk, really but at the same time, they have to be charming and they have to stand out, but not stand out too much. You have to fit in, but you need to have a sparkling personality.

Alison Stewart: Sounds like a job interview a little bit.

Rachel: Exactly.

Alison Stewart: Did you get a sense that there was any hazing or that there was any danger?

Rachel: No. There's a lot of misconception around hazing and rush for sororities. The sorority rush is really all about getting to know you. Any sort of hazing does not happen during the rush period, so our film didn't focus on that.

Alison Stewart: It does seem expensive. All of the clothing and the makeup and the hair. What are they spending money on? Did you get a sense of how much money they're spending and how much it costs to be part of one of these sororities?

Rachel: We have a figure in our film. The average cost for new members to join a sorority per year is $8,300 at the University of Alabama. That's the middle cost. That's the average. There's higher sorority dues, and there's lower sorority dues. That's just to participate in year one. With that being said, you do get three meals a day, just to be clear, but the outfits, some of these outfits that these young women are buying are $300 each. I know that there's more affordable options, but it's expensive to look the part to get into the sorority.

Alison Stewart: My guest is Director Rachel Fleit. The name of her film is Bama Rush. It is streaming on Max now. We want to get you in on this conversation. Did you join a sorority? What was the appeal of it for you? How did it help you develop? Or maybe you joined a sorority or rush a sorority, and you didn't have a great experience. You can tell us what didn't work for you. The number is 212-433-9692, 212-433-WNYC. You can call in and get on the air or you can text us there, or you can reach out on our social media as well at @AllOfItWNYC. You made some interesting choices as a filmmaker. It's not just cinema [unintelligible 00:11:52]. You're not only following these young women around. Instead, you also bring in some experts to provide context and historical context. When did you know you wanted to have these other voices in the film?

Rachel: It was pretty soon that we decided we wanted to have experts and other voices just because sorority culture is so limited in the mainstream media. We just don't know a lot, and I think for me, what really struck me was early on in my own research, realizing that sororities started at the beginning of co-education. Young women who first joined sororities, were the first women to actually go to college, which was such a huge deal. The boys were having these fraternal organizations and the young women were like, "We want that too. We're here at college."

The origins of sororities were actually these radical feminists, and I really wanted everyone to see that. Of course, as time went on, it went from academia and feminism to in the second generation of sororities being much more focused on parties and socializing and being like the best representation of womanhood, and so it changed. I don't doubt that these sisterhoods still have some strong feminist values, but there's definitely other things at play.

Alison Stewart: Let's listen to a clip from Bama Rush. This features someone you interviewed, Elizabeth Boyd, PhD, author of Southern Beauty: Race, Ritual and Memory in the Modern South. This is from Bama Rush.

Elizabeth Boyd: I visited the University of Alabama observing the sorority rush parties. I probably saw five or six houses. Rush is a social stratification ritual, bar none. Stratification in the sense of organizing people and groups of people into tiers of power, of status, of prestige.

Alison Stewart: What was something you heard in those interviews that really helped you shape the film or maybe even change the direction of the film?

Rachel: Social stratification ritual is something that just rings in my mind as a pivotal moment in the direction. When we realized that there was a tier system, there's top tier, mid-tier, and lower tier, I started to see that there was something underneath all of this, which I like to think of as I want to say the patriarchy and white supremacy. There's a fight to get to the top tier sorority and as one of my participants mentioned, the top tier sorority are the hottest girls.

The competition between women to get into that top tier sorority, because the top tier sorority would be paired with the top tier fraternity. By paired it means socially paired. They would be partners in parties and other sorts of events. You would get to mingle with these top-tier fraternity men. To me it really started to feel like this competition between women and also a race and class power struggle.

Alison Stewart: Yes. The film goes into the male gaze, it goes into race. University of Alabama did not officially segregate their sorority, their Greek system until 2013, just a decade ago.

Rachel: That's right.

Alison Stewart: When you talked to the young women about race, how did they think about it? How did they talk about it?

Rachel: I have two of my main subjects, Ryan and Michaela, who are both mixed-race young women, and I really wanted them to just speak about their personal experience with being mixed race at the University of Alabama to just present the information and let my audience digest that. The young women who are not women of color really did not want to talk about race. They were happy to tell me that their sororities now had DEI representatives and that they were working to change things, but they wouldn't really dive deep into that at all.

Alison Stewart: Did you get a sense that they didn't want to dive deep into it? There's not knowing how to dive deep and then there's not wanting to dive deep.

Rachel: I think they didn't know. I think that the young women in the film, you see it towards the end of my film, they talk a lot about being afraid of not being liked and being canceled. I think that the social media culture down there is so black and white and so polarizing and honestly quite mean that they were unsure about how to talk about it.

Alison Stewart: Let's take a couple calls. Alexis calling in from Red Bank. Hi, Alexis. Thank you for calling All Of It.

Alexis: Hi, I just want to say I love that your guest is doing this story and with such depth. I think there is so many implications, which she was just discussing in terms of race and elitism. I went to school in the '80s in New Jersey. I do think northern schools are quite different than the southern schools. They're less formal and a little more relaxed. When I rushed as a freshman, I realized it was not for me. I am not a conformist. I am a nice person. I don't ever want to make anybody feel like I'm stamping myself as, "Okay, I'm in this group that's superior," and I knew it wasn't for me.

But as chance would have it, as a junior I wound up in an apartment with four women all in the same sorority that was one of the top-tier sororities. They were saying, "Alexis, do it. Let's do it." I'm like, "Guys, I don't want to do it." Ultimately, they convinced me. Now I shouldn't have gone against what I knew was not for me. I'd walk down the street, or down campus, I'd cover my pins. I didn't want anybody to see them. I did happen to be a cheerleader at my school. There was a group of young men, they saw the pin. They're like, "Oh my god, you're such a follower. What are you doing?" They literally put me in a garbage can.

Alison Stewart: Alexis, I'm going to dive in because you're bringing me to a really interesting point. Thank you so much for calling out the conformity aspect, Rachel, because these women, so many young women hire these consultants for quite a bit of money, college consultants to help them shape their candidacy, sort of, I guess is the way to put it. What's some of the guidance they get?

Rachel: The guidance is really about first of all, there's small talk and the five Bs. Those are the five things you have to stay away from.

Alison Stewart: What are the five Bs? Literally, let the audience know.

Rachel: Boys, booze, bucks, Bible, and Biden. That's don't talk about boys, don't talk about alcohol, don't talk about religion, don't talk about money, and don't talk about politics. Those are your five Bs. Then you have to dress in a certain way. There is dresses only. No jumpsuits, no shorts, no pants. Bright colors. Do not wear black. You should be wearing a high heel. Your hair should be done. We went to see a hairstylist in Atlanta, Georgia. She showed the girls how to tease their hair so that it was bigger. The makeup needs to be set. The girls walk around in Tuscaloosa with these fans for their faces because the makeup will start dripping because it's so hot. It's quite an ordeal. There's a lot to do.

Alison Stewart: We got a text. When we searched colleges we were leaning away from schools with Greek life. However, when my daughter was accepted at a small high-tech university with 70% men in her engineering major, she found salvation in her sophomore year with a sorority. Many of her classes had no or one other girl and making friends with other women was hard, but the sorority really changed things. Thank you so much for texting in. You had this thing that happens that filmmakers don't want to have happen. Two things happened. One is that there got to be a bit of a wave against your film before you even finished it. Rumors started about your intention, about what you were doing, about who was on campus, who you were engaging with. When did you first get a sense that something had gone wonky?

Rachel: I was actually in New York and I got a text message of a screenshot of a Facebook page for the parents of young women rushing at the University of Alabama. That screenshot is actually in the film in the third act when the rumor starts. They just accused us of surreptitiously recording these young women and putting microphones on young women and paying people to go through rush so we could record the whole process. I was appalled. I was like, "What? We're not doing that. That's crazy." Then it just exploded from there and it was extremely stressful. In the end, I think that rumor shows the power of the Greek system, and I don't want to give away any spoilers, but it did really impact our film and the subjects in the film.

Alison Stewart: There's a discussion of a group that's somewhere between Skull and Bones and the Illuminati that everyone seems to feel has a great deal of power. I don't want to give so much away, but did you get a sense that this group knew about your film and had any intentions of trying to thwart your film or disrupt your film?

Rachel: As one of my subjects Garrett says in the film, he says the Greek system is the machine. The machine is the Greek system. Obviously, a lot of young women knew that we were making this film because we contacted them and they said they weren't allowed to speak to us. I think absolutely the Greek system was aware that the film was being made, and if the Greek system is the machine, then in my mind, of course, the machine had something to do with this rumor really going viral.

Alison Stewart: My guest is Rachel Fleit. She's the director of Bama Rush. Let's talk to Ginger, calling in from New York. Ginger, thanks for calling in.

Ginger: Hi. Thanks, Alison, for letting me get through.

Alison Stewart: Of course.

Ginger: I just called because I belong to one of the historically African American sororities. I haven't seen the film yet though folks are talking about it and it's just interesting that we exist in different universes even when worlds are integrated and for different purposes. I belong to AKA, my daughter's an AKA, my mother was an AKA.

Alison Stewart: Vice president's an AKA.

Ginger: The Vice President's an AKA. Toni Morrison was an AKA. It's more of a lifelong network of professional Black women that came about over 100 years ago when they were excluded from so much. It's a support network and a community service network ongoing. I think the social pressure is just very different in terms of it being part of-- It's definitely part of your identity and people choose the organization that fits best with their own personal identity. In terms of social pressure and what it means in terms of making friends and making "the right friends", I think it's very different. I think we probably feel just not that level of pressure.

Alison Stewart: Sure.

Ginger: It's also interesting. Most folks I know had no desire to join a white sorority. I went to a predominantly white private school growing up and people were picking out what sorority they wanted to join. Most of my Black friends we just didn't have any desire. We had white friends.

Alison Stewart: Sure.

Ginger: We didn't want to belong to organizations where we were going to feel like the oddball. We wanted to really belong to something. Those I've noticed.

Alison Stewart: You better like pink and green. I hope you do. I know you do. In terms of Black sororities on campus, Rachel, you do touch on it in the film. How did you see them in relationship to the predominantly white Greek system?

Rachel: In my research, I met with some amazing young women who are members of Divine Nine sororities at the University of Alabama which is an incredible, vibrant community. It was incredible to meet them. We were very clear that this was a film about the historically white sorority system, but that we couldn't tell the story without explaining the history of the Divine Nine at the University of Alabama and the events that took place when the Alpha Kappa Alpha Sisters moved to sorority row and the racist incidents that took place there. While we were much focused on the Panhellenic sororities, the historically white sororities, you couldn't tell the story without including the Divine Nine.

Alison Stewart: I want to mention before I let you go, you did a very brave thing and you included some of your own feelings and your own experience in the film as a woman with alopecia, especially since we've been talking about all of these very traditional beauty standards and what's expected of these girls that they have to be thin and wear high heels and all the rest, the right makeup. How was that for you to have to reflect on it, as filmmakers or journalists to reflect on things all the time, but then to decide that you wanted to share that?

Rachel: It was not my intention at all to put my own story into the film, but every time I sat down with these young women at the University of Alabama and tried to connect with them, I would tell them my own story of college, my own story of belonging. At a certain point in the process, my editor said, Rachel, I'm so sorry, but I think you're going to have to be in the movie. The reason why we decided that, and I was so resistant to it at first, I'm like, no, no, no. I'm a fly on the wall. That's not my style. I realized what I was going for was the maximum amount of empathy for these young women.

I realized that if I stood shoulder to shoulder with them and said, you know what, me too, I wanted to belong and this is what I did that might create this feeling in my audience. Like wait a second, I'm just like these girls on some level too. What did I do to belong? It was really with that intention. It felt scary. It felt like a big creative swing, but I'm so happy I did it. I've heard from so many people, alopecia or tons of beautiful hair that they really identified with that and that it really helped them in the experience of watching the film to identify.

Alison Stewart: The name of the film is Bama Rush. It is streaming now on Max. My guest has been its director Rachel Fleit. Rachel, thanks for being with us and taking listener calls.

Rachel: Thank you so much for having me, Alison.

Alison Stewart: Thanks to everybody who called in.

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This is All Of It on WNYC. I'm Alison Stewart. According to the World Health Organization, globally about 10% of women suffer from endometriosis, a painful chronic disease that can severely impact quality of life and affect fertility. Endometriosis gets its name from endometrium, the tissue that lines the uterus. The problems and excruciating pain occur when those cells grow outside of the uterus. Yet according to a new PBS documentary on the subject, it takes an average of 8 doctors and 10 years for women to be diagnosed.

That number is worse for women of color. This leads to not only, of course, frustration but a huge financial burden. The film titled Below the Belt: The Last Health Taboo, explores the lives of four women struggling with endometriosis, and through their stories, demonstrates the woeful gaps that still exist in our medical knowledge about this condition. Below the Belt is streaming now on PBS. Its producers include former Secretary of State Hillary Rodden Clinton, and actor and activist Rosario Dawson. The film's director is Shannon Cohen who brings first-person knowledge to the work as she has endometriosis. Shannon, welcome to the show.

Shannon: Hi. Thank you for having me.

Alison Stewart: Listeners, we want to hear from you. Have you had, or do you have endometriosis? What was the challenging part of your journey toward diagnosis and treatment? How has endometriosis affected your life? If you're a loved one, caring for someone with endometriosis, we want to hear your story as well. Our phone lines are open to you, 212-433-9692, 212-433-WNYC. You can call in and get on the air or you can text to us at those numbers. 212-433-9692, 212-433-WNYC. You can also hit us up on our social media @AllOfItwnyc. Shannon, what are common symptoms of endometriosis?

Shannon: They really run the gamut. I think most people when they think about endometriosis, if they do think about endometriosis, is really debilitating, painful periods. That is a symptom. If you have periods that are so painful that they interfere with your daily life, you can't go to school, you can't play sports that you want to play, you can't go out with your friends, you can't work in the way that you would like, then that's a red flag. Beyond that, there are a lot of gastrointestinal symptoms. Actually, GI symptoms are the most common first presenting symptoms of endometriosis, urinary symptoms, fatigue, migraines, really a lot of systemic symptoms.

Just from what you said, so basically endometriosis is when tissue that's actually similar to the endometrium grows outside the uterus. It's not exactly the same. That's really important because a lot of mainstream health sources say it's the same thing. That really leads to a lot of treatments that turn periods off, or hormonal manipulation when really we're talking about a systemic disease that goes beyond painful periods. The treatments that we have, and I'm sure we'll get into them in a minute, are really just so sorely lacking because of that initial definition of endometriosis and making sure that we get that right, that it's actually similar to the lining of the uterus.

Alison Stewart: How long did it take you to be properly diagnosed?

Shannon: I first had symptoms of endometriosis when I was 16 years old. Went from a really active athletic straight-A student to really being confused because I would have painful periods and GI symptoms that completely interfered with my normal high school experience. I went 13 years before I even heard the word endometriosis. These are 13 years where I had symptoms and I went to world-renowned specialist chasing symptoms, chasing tests and medications, when someone should have put the pieces together and they didn't. What's truly outrageous in the situation and why we made the film is that I'm not special in that regard. Of the 200 million people estimated who have endometriosis on the planet, that's normal. The average delayed diagnosis is 10 years.

Alison Stewart: What do you attribute that to?

Shannon: [laughs] Where do I start, Alison? Endometriosis is a perfect awful storm of so many things in women's healthcare. It is about menstrual taboo and societal stigma below the waist women's health issues. It's gender bias in medicine. It's racial bias in medicine. It's informed consent and understanding what we put in our bodies and how that affects us and affects symptoms and institutional and financial barriers to healthcare so that you can get to the right specialists so that you can get the right treatments, the right diagnostics so that you can find the answers that we need.

I often say that endometriosis is this weird-sounding word, but it's the most common devastating disease that most people have never heard of. At the same time, it's a modern medical manifestation of all of the things wrong in women's healthcare. Even though it's a weird word and people are like, "Okay, what is this segment about? Who is this? Why should I care?" I can say with 100% certainty that literally everyone listening to this right now is affected by endometriosis. You either have it or you know and love someone who has it, so you should care about it.

Alison Stewart: My guest is Director Shannon Cohn, the name of the film is Below the Belt: The Last Health Taboo. It's streaming now on PBS. One of the big struggles is getting that diagnosis. Let's listen to a clip from the film of one of your subjects Jenna, and her partner Joe, talking about her journey to get answers about her declining health. This is from Below the Belt.

Jenna: For years now, I've been sent to every specialist that makes sense based on my symptoms; OB-GYNs, pulmonologists, cardiologists. They don't see a problem based on their specialty. No one's looking at the big picture. Now, what am I supposed to do to get better?

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The biggest struggle is it basically strips me of all of my coping mechanisms. When I'm stressed, I exercise. When I have extra energy, I exercise. When I'm tired, I exercise. I don't really have a place to escape to. There's nowhere for me to do that when I can't exercise.

Joe: The scariest thing is that Jenna's also a nurse. She's one of the most capable people that I know, and certainly, when it comes to any kind of medical thing, she should know.

Alison Stewart: Jenna, as we said, she's a nurse. She has had to make multiple trips to the ER with no relief, but she knows that as a Black woman, she started bringing her white boyfriend to appointments and found that doctors took her pain more seriously when he was there. How does racism and sexism factor into this story?

Shannon: Jenna says it best in the film. Jenna is clearly a capable, educated woman. She's a registered nurse, and her boyfriend is a white male. He's a software engineer. She would go to the ER and try to talk to her doctor about her symptoms on a peer-to-peer basis. She found over time that if she had her white boyfriend, who was a software engineer go in and either vouch for her or even speak for her, she was taken more seriously.

Research shows that people of color, there's this long-delay to diagnosis, but actually women of color, people of color have a longer delay to diagnosis and are even treated first for more often for sexually transmitted diseases. That's what they're diagnosed with first. Then eventually perhaps endometriosis. It's really alarming and terrible. Like I say, it's a manifestation of all of these things that make up this perfect awful storm in healthcare in the US.

Alison Stewart: Let's take a couple of calls. Talk to Kathy. Hi, Kathy. Thank you so much for calling in.

Kathy: Oh, thank you for having me. My experience was very similar to what has already been discussed, but as a young woman, it totally impacted on my life. I had to schedule everything, all my activities around when I was having a period. It was very painful. I'm now 73, so we're talking about maybe 50 years ago. The treatment of myself is very similar to what's being described about a person of color. I wasn't taken seriously. It was all in my head. They recommended D&Cs and was on hormonal treatments. I think that the medical community really did not have the information to be able to deal with people who were suffering these bouts. I also was anemic as a result of these monthly occurrences.

It also impacted when I did marry, it impacted on my husband because he was witnessing this. Of course, it impacted on his routines also. I'm glad that you're addressing this because I think that it's an issue that has been long denied recognition and people who are suffering with it are not given the recognition that they deserve in terms of how they're experiencing this ailment.

Alison Stewart: Kathy, thanks for calling in. Let's talk to Rachel, calling in from Hardwick, New Jersey. Hi, Rachel. Thank you for calling All Of It. You're on the air.

Rachel: Hi. Thanks so much. I am so thrilled that you're doing this program today and I have a lot to say, so I'll try to keep it quick, but I really relate to everything that's been explained already. I got my period at 10 years old. Seems to be pretty typical for women who have endo to get their periods early. I didn't get diagnosed with endo until I was 39 years old and suffered for so many, many years. It's the only thing that ever caused me to miss work for sick days and things like that. I also struggled with the problem of no one really understanding why I just had my period and I couldn't come to work or I couldn't do this activity.

I think it hurt my ability to get promotions and things like that at different times. One of the big issues, including what your guest has already explained, and I've seen the documentary, it's awesome, thank you so much for making it, one of the other issues that comes up is how women get their treatment. There's so much misinformation out there. After visiting so many doctors, I was told I should just get pregnant and that would solve my pain issues and that the pain was normal. I should be proud that I have my period and just endure and things like that, even though I would pass out from the pain and things like that. Anyway, one of the really big issues as far as insurance companies are concerned is, they get to make the decisions really about how women are treated for endometriosis. There are basically two main treatments. When we get to the surgical level, there's what's called excision and what's called ablation. Ablation means burning the endometrial lesions. Excision means cutting them out at the root. I had to fight with my insurance company once I finally found this incredible doctor and team to help me to get them paid for because they were considered out of network and the insurance company wouldn't pay for it because they wouldn't see any difference between excision versus ablation. These two different techniques.

Alison Stewart: [crosstalk] Rachel, I'm going to dive in, because we're going to talk about that in just a minute, but I do need to take a quick break. Thank you so much for bringing those subjects up. After the break, we will discuss treatment and we'll discuss the insurance industry. We'll also talk about mental health and quality of life with Shannon Cohn, Director of Below the Belt: The Last Health Taboo, a documentary about endometriosis. We'll meet Shannon and we'll meet the rest of you right after the break.

 

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