We all know someone with a chronic illness. Given that 117 million people in the United States live with one or more chronic illnesses, we’re more than likely encountering someone in our workplaces, our homes, and our everyday lives who is navigating the ins and outs of sickness and the pain that accompanies it. Chronic illnesses are especially pervasive among women, and thanks to medicine’s long history of paternalism and ambient sexism, doctors regularly dismiss or disbelieve women who suffer with unexplained pain.
“In Sickness” is a weeklong series about chronic illness—and what the misdiagnosis, disdain, and marginalizing of people with chronic illnesses reveals about our culture.
EIGHT YEARS OF MYSTERY PAIN
THE PATTERN OF DISMISSING FEMALE PAIN
A BRIEF HISTORY OF “HYSTERIA” AND PMS
STORY FROM THE HEART
• The information about the history of PMS on this episode comes from two sources: a well-researched History Buff article and research by C. Amanda Rittenhouse that’s summarized nicely as “How PMS Became a Thing.”
• Want to learn more about endometriosis? Read Caroline Reilly’s article about her experience getting a diagnosis.
• Creative Commons photos featured on the Soundcloud files for this show come from Ed Uthman and Silvia Sala.
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SARAH MIRK: This is Popaganda, the feminist response to pop culture podcast. I’m Sarah Mirk.
CAROLINE: So I would say the first time I experienced symptoms, I was 13 or 14.
SARAH: Say hello to Caroline Reilly: Writer, law student, and excellent human extraordinaire.
CAROLINE: And then in my senior year of high school, I had my period for three months, literally spotting every day for three months. And I was fatigued, and I was really sick-feeling all the time.
SARAH: For most of her life, she dealt with a mystery. The mystery was, unfortunately, coming from inside her own body. A mysterious, very intense pain that plagued her ever since she got her period as a teenager.
CAROLINE: This is gonna sound really sort of comical, but the best way I can describe it is this feeling like there were hermit crabs pinching me, like this awful sort of prickly, needly feeling usually in the middle of the month, but it really popped up whenever. And I never really could figure out what it was. Then I would sometimes wake up in the middle of the night with a really sharp stabbing pain.
SARAH: She went to the doctor…a lot. No one could figure out what it was, but it was definitely related to her uterus in some way.
CAROLINE: So nobody could figure out what it was. Everybody said maybe it’s cysts, maybe it’s just– One doctor said I had really active ovaries, which in retrospect sounds so no what was going on.
SARAH: Doctors told her over and over that the pain was just part of having a period. When you have a uterus, pain is just a fact of life. So it sucks, but grin and bear it.
CAROLINE: It’s something that we just sort of have to suck up, and everybody deals with it. I think that’s sort of the mindset that I was in at the time.
SARAH: Caroline tried different birth controls; she tried pain killers. The mysterious pain was frightening and bad, but she could deal with it. Until a year ago, when she started law school.
CAROLINE: I would drive to school in the morning, and it was an hour and a half, sometimes in traffic, two hours. And I could not hold my pee. I was literally like the feeling of having to pee. I would get light-headed and nauseous and feel like I was gonna pass out from the pain of it. And when I did get my period, my cramps were so, so mind-numbing that I would take 1,000 milligrams of extra-strength Tylenol. I just remember sitting in class, in my property law class, trying to understand what was going on and just sweating profusely one minute and having the worst chills the next and feeling, again, like I was just gonna hit the deck.
SARAH: The pain was all-consuming. But that’s just part of having a period, right?
CAROLINE: But again, in my head the whole time I’m like, “I just have bad periods. My period’s always been screwed up.” And I got really, really worried one night when I was talking to my mom about it, and I said, “No, my pelvis hurts when you press on it. Just try.” And she pressed on my stomach right below my belly button, and I yelped and doubled over in pain. I was like, what is going on? I just remember going to bed that night crying because I was terrified of what this pain was, because I was like, this seems like it’s all coming to a head, and I haven’t gotten any answers thus far. So where do I go from here?
SARAH: After that night where the pain was so bad it kept her up crying, Caroline went to a new gynecologist who said something she had never heard before: Caroline might have a little bit of endometriosis.
CAROLINE: I did some research on endometriosis, and I think that’s when I started to get a little scared. Because when you read about endometriosis, everybody says it’s chronic; you have it your whole life. I think the thing that scared me the most–even though I don’t really know what the future holds, and I’m not one of these people that thinks really a lot about having a family or having children–it can cause infertility, and that terrified me.
SARAH: Endometriosis is a condition that you’re born with. It affects your uterus.
CAROLINE: When you’re born, you have endometrial tissue and cells, and there are these cells that plant themselves in the wrong place. They plant themselves outside of your uterus, outside of your endometrial lining.
SARAH: Caroline still didn’t have a diagnosis, though, and the pain somehow got even worse.
CAROLINE: I felt like someone was sticking pins in me, like my insides were pincushions, and someone was just going at them. And it just never went away. Leading up to surgery, I was really, really debilitated. I couldn’t leave my house. I couldn’t really stand for that long. I was still taking 550 milligrams of Naproxen every 12 hours, which I’m sure you can imagine is not really good for your liver or your kidneys or anything. And I basically would just sit all day with my heating pad on turned all the way to the up to the point where I remember going to the doctor and them looking at my stomach, and it was covered in burn marks from the heating pad. They were like, “What?” And I was like, “I can’t. I can’t. I can’t take it off. It’s the only relief I get.” My biggest fear going into surgery was not that it wouldn’t work but that they would find nothing. Because I think we are conditioned to see the pain that accompanies our reproductive health as natural. And my fear was that this pain that I had been feeling was just my body saying, “You’re not strong enough to cope with it. Your pain is like everybody else’s pain, but you’re just weak, and you don’t actually have endometriosis. You’re just not equipped to handle this.”
SARAH: When Caroline came out of surgery, through the haze of drugs, she desperately asked the doctor one question: “Did you find anything?” “Oh yeah. Oh yeah,” said the doctor. “You were covered in lesions.” She finally had an answer for the mysterious pain.
CAROLINE: Where I was like, “OK, I’m not making this up. I actually do have something wrong with me.”
SARAH: Getting this diagnosis had taken eight years. For that, for only being in pain for eight years, Caroline is better off than some people. In North America, the average time it takes to be diagnosed with endometriosis is more than nine years. Nine years! That’s especially bad because endometriosis is a disease that’s progressive. The longer it’s untreated, the more damage it can cause.
CAROLINE: I’m really upset that it took me eight years to be diagnosed or eight years for someone to mention this might be endometriosis when the symptoms were there in black and white for years. And it really makes me question the state of gynecological medicine if this is something that isn’t out of the gate something that doctors are talking to patients who have bad periods or are noticing really painful bowel movements or pain with sex. There are just so many basic symptoms that I think are so common that it’s blasphemy that doctors aren’t addressing this much sooner.
SARAH: The whole eight years, she thought maybe it was just all in her head. It was hard to trust her own lived experience. It was hard to trust herself.
CAROLINE: So I think it was sort of a two-stage acceptance process where the first stage was this relief and validation that I knew I had not made this up, and I knew that I was comfort in the fact that I knew what was going on with my body. And then on top of it came this OK, this is a lifelong disease; this is something I am potentially going to cope with for the rest of my life.
SARAH: Pain like this shouldn’t have to be a mystery. Endometriosis is rare but not that rare. The National Institute of Health says that an estimated 10% of women of reproductive age have endometriosis. In the United States, that’s 5 million women.
You have to ask: What role does gender play in the lack of understanding and treatment here?
CAROLINE: I’d gone to the doctor a number of times over the years saying, “What’s wrong with me? Why am I in so much pain? Why do I have a pain here?” And I always had ultrasounds, and nobody brought it up to me until I was 22.
SARAH: It’s important to say here that gender is not defined by biology, that there are women with uteruses and women without uteruses. And that transgender people specifically have faced, and still face, major disparities in healthcare treatment because of discrimination inside and outside the healthcare system that defines women as having to have a uterus.
So the big question here is this: Why does it take an average of 9 years for anyone with a uterus, regardless of gender identity, to be diagnosed with endometriosis? Why is such a basic part of our bodies such a medical mystery?
CAROLINE: Yeah, I mean I think out of the gate, the first issue is the stigmatization of menstruation, reproductive health, period. I mean I was mortified at having to talk to my professors and say, “I have endometriosis.” Some of my really lovely classmates even were like, “What is that?” And they asked me, and they wanted to hear about it. I was like, “Oh, I’m sorry if this is TMI.” And one of my good girlfriends snapped me out of it. She was like, “Don’t say that. It’s not TMI. It’s your health, and it’s normal. So many of us get periods. It’s fine.”
SARAH: Caroline’s story is still ongoing. The first surgery didn’t work. The doctor burned off all the lesions, but they came back. After two months, she was in debilitating pain again.
CAROLINE: And I went online, and I found hundreds of women in this online community called Nancy’s Nook. And then they had other splinter groups that are–I’m part of the Boston group for endometriosis on Facebook, but they have them all over the country–of women who had had the exact same experience as me. They had had cauterization surgery, and it didn’t work.
SARAH: A more modern, effective surgery involves removing all of the endometriosis, cutting it out rather than just burning off the surface. But there are fewer doctors who do that kind of surgery.
CAROLINE: Basically, they make their living off of fixing the cautery surgeries that other doctors do, and it’s much more common to come across a doctor who does cautery or who does some sort of laser or ablation surgery.
SARAH: So Caroline is waiting for a second surgery in January. This time, she’ll be heading up from Boston to Maine, because the doctor who does the surgery lives there. She’s really hopeful about her new doctor. He seems really good. He seems transparent and open, says Caroline, and he believes what she says about her body. That seems like it should be basic, but it’s not.
CAROLINE: I’m sure that this is true of a lot of chronic illnesses, but I think that there has to be some element to it that is unique to reproductive health and female pain where doctors look at these patients, and they say, “You’re just overreacting. You’re not in that much pain.” And I read from women that I talk to online going through doctors. One woman actually said she has–actually, I’ve heard more than one woman say–she has PTSD from going through so many doctors telling her, “You’re making this up.” And I think that, too, speaks to sort of a neglect for women’s health.
SARAH: While everyone experiences pain in one way or another, how doctors treat their pain is not equal. This isn’t just one story of one random woman who had a bad experience with a doctor. There are some sinister patterns of gender bias in the treatment of pain. This is something that writer Maya Dusenberry has been researching.
Maya is hard at work at a book called Doing Harm: The Truth About How Bad Medicine and Lazy Science Leave Women Dismissed, Misdiagnosed, and Sick. It’s due out this Spring.
MAYA: Hi, I’m Maya Dusenbery. I’m an editor at Feministing, and I’m writing a book about gender bias in the U.S. medical system.
SARAH: Tell me a little bit about your book, Maya. I know I’ve read some about it, but what’s the elevator pitch?
MAYA: So my book is called Doing Harm, and it’s about how women’s health has been neglected in the U.S. medical system, and it’s sort of looking at two dynamics: One that I’m calling the knowledge gap, and one that I’m calling the trust gap. So the knowledge gap is covering the way that women’s health, conditions that disproportionately affect us, and also sex- and gender-based differences in symptoms or drug responses or risk factors for the same disease have kind of been ignored. And the result is that we just don’t know as much about women’s health compared to men’s health. And I’m looking at how that mutually reinforcing, reinforced with this trust gap, whereas in many realms, women’s voices are not taken as seriously. Their reports of their own reality is often questioned, and they’re not treated as reliable reporters of their symptoms.
SARAH: So does this book look at cisgender women, transgender women, all women? What’s the definition of “women” here?
MAYA: Yeah, I mean it is looking at both sex and gender bias. So sort of covering cisgender women when it comes to the lack of research on female-assigned bodies. But then also, on this sort of doctor-provider relationship level, I’m also looking at gender stereotypes that affect all women: Cis, trans, anybody who is read as female.
SARAH: Let’s talk about heart attacks. This is something that you reported on for the magazine Pacific Standard. For me, it was a real wakeup call reading your article about this that is part of this book that you’re writing. Tell me about heart attacks and the way that gender bias plays into how we think about and treat heart attacks.
MAYA: Yeah, the heart attack story was a real wakeup call to me as well. The problem has sort of been that heart disease has been stereotyped as this sort of man’s disease, and the reason for that is that men tend to develop it earlier than women do. And so when we started becoming very concerned about people, rising rates of heart disease, it was middle-aged men who were dying prematurely from heart attacks that we were very focused on. So that kind of entrenched this idea that young women, at least until menopause, just didn’t get heart disease. Which is not true. I mean, it is true that they are at relatively less risk compared to men, but obviously, they do get it. And in fact, it’s the number 1 killer of women in this country and has been for a very long time. Since 1984, actually more women have died each year in absolute numbers from heart disease and cardiovascular diseases than men have. Yet, because of the stereotype, there’s this initial tendency to not take women as seriously when they report chest pain or other symptoms. And the other part of it is that because of the stereotype, a lot of our research has been focused on men’s heart disease. So a lot of what we do know about it has been derived from studies, clinical studies, in which it’s mostly men. So one of the consequences of that is that women actually have a broader range of symptoms on average. Most people have chest pain, but women are more likely to have “atypical” symptoms that might not be recognized and are more likely to be missed. But even when a man and a woman both are reporting the very classic symptoms of a heart attack, of chest pain, there’s lots of research that shows that women are taken less seriously. It takes longer for them to get the diagnostic testing and interventions that could be lifesaving. We have this stereotype that men are expected to be really stoic in the face of pain–keep the stiff upper lip–while women are “permitted” to express their pain more. And of course, I think that’s very true that there are those really, in some cases, very strong cultural masculinity norms that put that pressure on men. But it kind of leads to this interesting thing where somehow women are being judged against men, and so the fact that men are assumed to be under-reporting their pain means that women are automatically over-reporting it, which just, I mean it’s not the reality at all.
SARAH: So in all your research, what kind of gender biases have you seen in the medical establishment around gender and pain?
MAYA: As in a lot of places, I think that one of the fascinating and really infuriating things is that women seem to lose no matter which way they go. So because there’s this stereotype that women are hysterical or have this emotional response to pain, if they play into that stereotype and are very emotional or crying and really expressing their pain, then they’ll be seen as just, “Oh, that’s a typical hysterical woman” and maybe not be taken as seriously. On the other hand though, if they try to go the opposite route and be really stoic and maybe even under-report their pain– And this is women have told stories, chronic pain patients who have done this, who have admitted that they actually won’t admit how much pain they’re in specifically because they don’t want to play into that stereotype of the hysterical woman. But of course then, if you’re under-reporting your pain, that’s also not a very good strategy if the goal is to get your pain taken seriously.
SARAH: It seems like this is such a widespread phenomenon that there must be people studying it. What kind of research or studies have you read on this that either blew your mind or made you really think about the gender dynamics of pain in a new and different way?
MAYA: Yeah. Well, there’s a really classic article called The Girl Who Cried Pain. And they’d started looking at them in pain and had concluded that, in general, women tend to be more sensitive to pain or less able to tolerate it or at least are more likely to report it. So they pointed out that, given that difference, if there were any differences when it comes to pain treatment in the real world between men and women, you would think that, at the very least, women wouldn’t receive less treatment than their male counterparts. But in fact, the opposite was true. They looked at various studies that had come out, and overall, the data showed that women who seek help are less likely than men to be taken seriously, and when they report pain, they’re less likely to have their pain adequately treated.
SARAH: What’s your personal experience with this? What in your life is prompting you to do this research and write this book?
MAYA: Yeah, well, I’ve written about women’s health for a long time, mostly about reproductive health, and have worked on that for a long time. And I think part of my motivation for writing this book was just that I realized that I had sort of not given much thought to how gender bias affected the rest of medicine. And in part, I think that was just because I had been a really pretty healthy person for 27 years and had mostly been interacting with the medical system when it came to routine reproductive health care. Which obviously is vitally important and should be a huge focus. But a few years ago, I developed rheumatoid arthritis, and so that kind of started me down this path of learning more about autoimmune diseases and learning more about other conditions that disproportionately affect women that have been neglected. And having that personal experience has made me even more just amazed by the strength of people who actually do live with chronic pain all the time. Which I think that it’s hard for people to imagine that because it is a really sort of unimaginable thing, and it’s really amazing that people do it and that we have really neglected those people who are doing it.
SARAH: Well Maya, do you see any hope for the future here? Do you see anything changing in the medical establishment as more people like you are talking about this?
MAYA: Yeah, I think so. I think there’s actually on the chronic pain front, there was a really big report a few years ago, in 2011, by the Institutes of Medicine. So very prestigious. That was a really pretty stark indictment of the medical system’s treatment of pain. They really concluded that we have 100 million people in this country who are living with chronic pain, and treatment is really poor. There’s not a lot of education in medical education about how to treat pain. But I think that that was a sort of wakeup call.
SARAH: That was writer and editor Maya Dusenberry. Her book, Doing Harm, comes out this Spring from Harper One. Keep your eyes peel.
For one case in point where medical professionals misunderstood and dismissed and diminished women’s pain, just look at the history of PMS. About 80% of cisgender women in the world report having premenstrual syndromes, a diverse array of issues ranging from headaches and cramps to mood swings. The Association of Reproductive Health Professionals list 200 symptoms for PMS. Personally, I haven’t had a period in about five years because I have a hormonal IUD, but every month I get like phantom PMS symptoms and do things like cry four times while watching The Lion King. But for millennia, the mostly male western medical authorities thought PMS wasn’t a real thing. Doctors thought that a wide range of emotional issues and physical pains women reported were due to an illness called hysteria.
Hysteria was caused by a problematic uterus, like a uterus that would wander around the body. They linked “hysteria” to emotional turbulence that could lead to both severe horniness and homicidal mania. An early treatment for hysteria was vibrators or doctors even stimulating clitorises with their hands. It wasn’t until 1931 that a gynecologist, Robert T. Frank, suggested that hormonal shifts could be responsible for the recognizable pattern of behavior called “premenstrual tension.” But it wasn’t until the 80s–the 1980s, not that long ago–that PMS became a widely discussed and accepted condition. And even then (and now) it’s often used to stereotype women as unstable people who might lash out because of their uteruses or attribute our perfectly legitimate anger and feelings to just “that time of the month.” As researcher C. Amanda Rittenhouse wrote in 1991, public discussions around PMS, “brought out old stereotypical views about women’s abilities to control themselves. Yet over time, this view was changed by feminist writers who pointed out the dangers and myths behind these emerging images.”
These days, PMS is widely accepted as a reality for cisgender women. But here’s something interesting: Some trans women, who were assigned male at birth, report PMS-like symptoms, too.
SAM: Hi, I’m Sam Riedel. I’m a freelance writer and editor. I’ve written for The Establishment and, of course, Bitch Media and other sites like the Mary Sue and the Barnes & Noble book blog.
SARAH: Sam Riedel reported on this phenomena for feminist website The Establishment. She wrote an article called Yes, Trans Women Can Get Period Symptoms, where she interviewed 15 transgender women and agender and androgynous people about how they experience PMS symptoms. I asked her how she got interested in this subject.
SAM: Well, I am trans myself [chuckling] so I have a personal interest in it. But I wasn’t really aware of anything like this happening until I talked to my girlfriend, Ashley. And we were just kind of hanging out one day at her house, and she mentioned that she was about to go into the hospital for a week or two. She was nervous about the amount of time that she was going to spend there because she said she was due for her period in a couple of days, and she really wasn’t looking forward to doing that in the hospital. And I was blown away because I’d never considered that trans women and trans feminine people who are on hormone replacement therapy or HRT, it had never occurred to me that we might experience period-like symptoms or PMS-like symptoms. Obviously, menstruation was out of the question, but there was this assumption in my head that none of the other stuff could come along with it. So after talking with Ashely and hearing her describe all of her different PMS-like symptoms, which are she gets nausea and hot flashes, dizziness, migraines, bloating, all sorts of things on a very regular, roughly monthly schedule, I started looking around and talking to other people online and people I knew in real life. And there were some really fascinating stories of people who’d had these experiences, and every one of them thought that they were the outlier, and they were totally alone. That’s just not the case.
SARAH: It’s not just Sam who’s surprised by these experiences. The world of PMS among trans people is a largely unstudied and undocumented frontier.
SAM: I got a little bit of pushback from people who said, “Oh, this is wishful thinking. You just want to have a period so badly that it’s like a hysterical pregnancy.” And I mean there’s always going to be those people who are saying that about trans women and trans feminine people regardless of their experience, but agender people. I talked to a person named Blue who they said, “I don’t want this. This is nothing to do with my experience of my gender. But biologically, there’s something going on here.”
SARAH: This is all anecdotal. I haven’t been able to find any medical studies so far about PMS in trans people, and neither could Sam. But Sam thinks that these symptoms are probably connected to the changing hormones caused by hormone replacement therapy, which is called HRT.
SAM: It was fairly difficult to nail down specific trends in this, but there is a trend towards PMS symptoms, in general, being experienced four, five, maybe six months after beginning HRT. And it’s certainly not universal by any sense. But then again, no effects of HRT have been found to be universal in the literature that exists. So this isn’t just another wrinkle in what exactly HRT can do to a trans body that really deserves more scrutiny by the medical community.
SARAH: It’s especially important to listen to and consider these experiences because medical authorities have often taken a pretty hostile view toward trans people. A doctor’s office often doesn’t feel like a safe space, says Sam.
SAM: There’s a real trend among trans people to be extremely reticent and nervous when talking about the intricacies of their experiences with healthcare providers. Given the level of violence in unexpected places, whether that’s verbal or whether that’s physical, it leads to a lot of trans people not being able to talk to their doctor about something that they really need to talk to their doctor about.
SARAH: Just like recognizing bodily pain experienced by cisgender women, it seems like listening to experiences and documenting patterns is the first step toward understanding this part of how trans bodies work. Remember, it was not long ago, like, really, not long ago, that cisgender women were called “hysterical” when they reported monthly pains.
SAM: And while it’s going to sound really basic when I say this, and it might not seem as helpful as I think it is at first, but I really just want there to be more conversations. I want cis women and trans women to feel like they can come together and talk about their medical experiences and find common ground, find where they don’t have common ground, and then come up with ways that we can advocate for one another on what we need.
SARAH: Thanks to Sam Ridel. You can read her article Yes, Trans Women Can Get Period Symptoms at The Establishment.
For the last half of this show, I have something very special to share. We’re featuring a story that was produced by one of my favorite podcasts, The Heart. And that means we have an esteemed guest here.
KAITLIN: So I’m Kaitlin Prest. I am the creative director of The Heart, a podcast and art project about intimacy and humanity where we tell love stories from critical perspective.
SARAH: Kaitlin, I love hearing your voice because I feel like on the podcast you’re talking straight into my brain.
KAITLIN: [laughs] That makes me happy.
SARAH: Do strangers ever come up to you and think you’re best friends because they listen to your show?
KAITLIN: Truthfully, well, that’s a very good question. Yes and no. I do think that I’ve been on dates with people where they make a lot of assumptions about how crazy I am around sex things, and that is really weird. But I did meet this woman. I was kind of coming up on Molly at this party in Montreal, and I was outside smoking a cigarette. And this girl, we randomly got into this amazing conversation about what we do with our lives and art and life, and I was like, “Oh, I make this show, this podcast.” And she was like, “Oh, what’s it called?” And I was like, “It’s called The Heart.” And she was like, “Oh my god! Are you Kaitlin Prest?” And I was like, “Yes, I am!” But she was so cool. She was like, “I know that I don’t actually know anything about your life, but I feel so close to you. But I know that I don’t actually know.” And I was like, “Oh my god! You’re so cool!” That, truthfully, it’s happened twice. We’re not really that famous.
SARAH: Well, the Heart is famous in my world. I started listening to you all the way back. Actually, back before the show was The Heart, it was called Audio Smut, and it was hosted on Bitch’s podcast feed.
KAITLIN: Well, I mean I remember back in the day, really literally a million years ago, when I was collaborating with Jess Grossman who was my first radio love and collaborator on Audio Smut. Our dream was to collaborate with Bitch in some way, and then I remember a few years later, I guess I just kept on trying. And I think I found out that there was a podcast, and I was like, “Oh my god, you guys. Can we make something for your podcast?” And then we did that. They were called Short Stacks.
SARAH: I totally remember those! That’s what I first heard when I started listening to Bitch’s podcast, before I even worked here.
SARAH: But anyway, I love what the show has become. It sounds great. I really feel like it keeps me company in my ears. So tell everyone about the story that we’re gonna hear.
KAITLIN: Oh….Let’s see. It was a collaboration between Anna Adlerstein–the woman who did the interviews–me, and Gina Gold, who is an incredible storyteller and just pours detail out of her mouth. Every single thing that she says is like a complete picture of hilarity and joy and raunchiness. And Anna had pitched us this story about a phone sex worker who had never had sex before, and that was sort of the beginning of the story. That was the pitch. And I was like, “Oh, that seems you know…cool. That seems funny, interesting. I’m really interested in hearing somebody.” Oh right, ‘cause the job that she had, the phone sex job that she had, was a soft-core phone sex line where she had to speak only in metaphor. And that seemed really hilarious. It was more interesting to us that she had to speak in metaphor, that she had to do phone sex with metaphors. That was more interesting to me than the fact that she was doing phone sex and had never actually had sex before or penetrative sex. Do you know what I mean? I’m like, whatever. I don’t care about virginity. That’s really kind of a non-issue to me, this idea that a dick in a vagina is somehow the definition of losing– I don’t know. Just all of the things around that, I’m like, I don’t care about that. But then once we got closer to the story and started talking to Anna and started talking to Gina, it sort of emerged that the reason why she had never had the kind of sex that she wanted to have, which is with a man with a penis in her vagina, was because she had this thing, this mystery around her body that was really confusing, and it really hurt. And she couldn’t have sex. I think for Gina, it was a little bit kind of slightly uncomfortable because, I mean, she’s super good at telling really funny stories about doing sex work or her relationships, but this was actually an extremely vulnerable story that was one that she had never really told before. And yeah, Anna and Gina are both total badasses.
SARAH: Well, let’s get to it. Here’s a story from The Heart. Just a heads up, this story is about sex! And it’s a lot more graphic than we usually get on Popaganda. Also, there are a lot of swear words [laughs]. I think it’s all awesome, but if you don’t want to listen to a sexually explicit story right now, well, here’s your warning.
CHINA: Hi, this is China Blue. Who’s out there?
DEREK: Uh…this is Derek.
KAITLIN: The scene.
CHINA: [expressionless] Oh, baby. Oh. Baby. Yes. Keep. I’m gonna….Uh.
KAITLIN: [clears throat] I rube a Priestess named Tobi who’s pretending to be calling in to the number 947-WETT.
CHINA: [still expressionless] Here I come. Now, are you ready? I am in my penthouse suite.
KAITLIN: Her best friend, Gina Gold, the protagonist of this episode is trying as hard as she can to reenact something she did more than 20 years ago. It’s putting her acting skills to the test.
GINA: [laughs] This was so 20 years ago. OK. OK.
CHINA: Can you slap that nakedness? Pop it. Can you pop po– Mmm.
ANN: Oh! Oh, and spanking her big–
ANN: OK [sighs].
KAITLIN: –our reporter extraordinaire is trying to keep things moving.
ANN: Like if you get more inspired, and we need more–
KAITLIN: They are all a little more than tipsy on Shabbat wine.
ALL: [raucous laughter, chatter]
KAITLIN: It is Saturday, after all.
GINA: I mean I don’t know. You know there are base creatures.
KAITLIN: From a few special mornings such as this, our story was recorded.
Our story begins in the ’80s. Gina Gold is living in Boston, studying at theater school, drinking beer for breakfast every morning, and having some issues with her boyfriend, Dmitri.
GINA: I really, really loved him. In a 23-year-old kinda way. We went on picnics, and we laughed, and we would go to the shopping mall a lot. We would go into North Beach Leather and get undressed, and I would suck his dick in the dressing room. Up until we tried to have sex, I had the best time ever with him. Dmitri was the first person I tried to have sex with. I’ve never had sex. In my life. I wanted to do it, but I was scared. I was convinced that my vagina wasn’t normal and that it must have a special shape that doesn’t allow the dick to go all the way through. There was something stopping it! Like there was a barrier. He took his dick out, and his dick looked like it was 25 inches long, and I just got terrified at the thought of– I let him try, but then I freaked. And I was like, “Oh my god! No, wait, wait, wait! Hold on. OK. Slow down.” And then he got insulted, and he got up. And then he left. I offered to cook dinner for him, but then I realized I didn’t have any money to actually cook the dinner. So I went to the store to steal a chicken. Well, when I got to the store–usually when I would steal a chicken, I would put it in my pants ‘cause it was the ’80s. But I [laughs] but the store was crowded that day, and I realized I couldn’t steal the chicken. So I was gone for a really long time. And when I got back, there was just a note that said, “Dear Gina, You could screw up a trip to hell.”
It really hurt my feelings. But I was gone for two hours! So I could see how that looked bad. And this is before cell phones. So I couldn’t call to say, “I’m delayed.” And then how could I say that, “I’m stealing a chicken? I’m held up.” And I don’t know what I was thinking anyway ‘cause it was raw. It’s like I still had to cook it when I get back. Why didn’t I steal a rotisserie chicken? It just was that bad planning.
I was so heartbroken over Dmitri, and I was really depressed. I wanted him to know how I felt, so I wrote him a Dear John letter.
“Dear Dmitri, I love you. I’m really sorry about the chicken incident; however, the way that you dealt with my sexual problem was mean and selfish. And so now I’m leaving to go across the country. Go fuck yourself?”
I had $69, and I bought a Greyhound ticket one way with the hope that I would make it as a famous actress. And I packed up six dresses in a suitcase, and I got on the bus and headed out West.
[music becomes more upbeat]
When I got to California, I immediately got a job at Berkeley Repertory Theater doing telemarketing because I thought at least I’ll be close to the theater. But I was upstairs, nowhere near the theater, just selling subscriptions over the phone. And I was having trouble selling because I just was, I just, my heart wasn’t in it. And the supervisor complained and said, “You guys aren’t selling any subscriptions. You need to flirt on the phones more.” And the woman next to me said, “If I was gonna flirt on the phone, I’d be doing phone sex.” So I was like, “That’s it! I’m gonna do phone sex!”
I called. I called, and I said, “Hello. I’m an actress,” as if they give a shit. I was like, “Yes, I’m an actress. I went to the American Academy of Dramatic Arts,” and they cut me off immediately. They were like, “Yeah, OK. Just come in and audition.”
There’s a room that’s divided into cubicles, and it says, “Hot California blondes.” They were all Black women that looked like they were from deep East Oakland. One woman was like, “Yeah, I got blond hair, and I got blue eyes,” and they were moaning. One girl, she had the phone down on the floor as she was actually doing her nails and just moaning from a far, like not really putting any thought or effort into it. I stumbled through the audition, but I got the job.
CHINA: [on the phone] I am in my penthouse suite with my friend Delilah. And Delilah and I like to play with each other’s…cotton candy with cream inside.
GINA: I started out on the soft porn line. It couldn’t be explicit. You had to speak in metaphors.
CHINA: But what we really wanna do is take your hot dog and lick all of the mustard off.
GINA: It would always be awkward because as they’re saying that, like, “Do you want me to put my dick in your ass?” then you’d have to respond, “Yes. I want you to park your car in the garage.” ‘Cause if you slip, the supervisor would come busting in, while I’m on the call: “I’m putting this in your file, Miss Prissy.” I got really good at it.
CHINA: I have a…giant garage, and it’s just waiting for your big, black Cadillac to drive in….John, I’m gonna open up my mouth big and wide, and then you’re gonna take that hot dog, and you’re gonna slowly slide it in the bun….Oh, I like that Delilah! [slapping sounds] Do you like that, Derek?…Tom? Oh, well, thank you, Tom. Oh, that’s wonderful! I love you too, Tom!…OK, all right. Bye.
GINA: There was that first month while I was doing phone sex where it was like crack cocaine. I was like, this is awesome. You’re telling me that I’m skilled sexually. My brain is eventually gonna go, “You are not really having sex. These people don’t really like you. You’re not really sexually skilled.” And when I finally got that on a cellular level, like this is not real, that’s when I decided to transition to stripping.
If I was grinding on dick, if I was sitting on dick in a thong, there should be no way that I would be afraid to fuck.
After a few years, nothing had changed. I’m 28, and I still didn’t have what I really wanted, which was sexual intimacy. And I was super depressed. I felt that I was not good enough, that something’s inherently wrong with me. Yes, I was able to have a good time to a point. But…every time someone tried to put their dick in, I felt the wall. They didn’t feel the wall. They said I wasn’t relaxing. I felt like it’s not because I’m not relaxing. It’s because– Or I’m not relaxing because you don’t get that there’s a wall there!
And they felt that the wall was me, and then, is that person gonna not like me anymore? And it’s just such a crappy feeling.
I finally decided that I was going to go to the doctor. I said to the doctor, “I think that there is a wall in my vagina,” and she laughed. And I said, “No, seriously. There’s a deformity. You need to take me seriously.” And she said, “Let’s do an exam.” And I said, “I can’t. I cannot have you put the speculum on. I cannot. No.” So she said, “OK. Let’s try putting you out.” So we actually had this whole big thing where I went to UCSF, got put out thousands of dollars, and it’s just to have a fucking exam.
I woke up, and I was like, “Tell me about the wall.” And she was like, “As I told you, there’s no wall. You’re totally normal. Everything down there works.” And I. Was. Shocked.
She told me that the wall was in my mind, that my body had clamped shut. That the mind is so powerful that it can create a wall that’s not there, and that because I felt fearful and apprehensive, I created a barrier that, in my mind, became a physical barrier. And that this condition is called vaginismus, and it doesn’t have to be caused by something horrific like a rape. It’s just a feeling of not having control. It could be caused by a poor relationship with a parent. It could be caused by being a child and having a painful dental exam or rectal exam or just anything that you felt out of control and needed to shut down. And not necessarily sexual.
So I thought, OK. So now what?
With the money that I made stripping, I hired a sex therapist and a sex surrogate, and they worked together.
The sex therapist is to help you psychologically with any sexual problems that you’re having and to navigate, to help you to have a plan as to how you’re going to work with the sex surrogate. The sex surrogate is the one that actually has physical contact and ultimately may have sex with you. And most sex surrogates were women. I said, “I don’t want a woman. That’s not gonna help me.” And she said, “Well, there’s only one man in the Bay Area that’s available.”
I go Berkeley, to the guy’s house and knock on the door. He opens the door.
He’s this…older…red-faced, red-necked gentleman with a really bad Massachusetts accent. Like, “Charlestown.” And he had a Donald Trump comb over.
And I was like, “I don’t wanna fuck you. I’m sorry. I can’t do it. I…maybe you have something else you can do.”
So he said, “OK, would you be willing to get undressed?”
“I would be willing to get undressed, but don’t…TOUCH ME. Don’t fucking touch me. Don’t look like you’re excited about me being naked.”
So I got undressed. He had a big king-size bed that had satin sheets and then a very New England quilt on the top. I opened up my legs, which is a very vulnerable thing to do, on his bed. On that quit.
He just said, “Can I put the mirror in between your legs?”
He put the mirror in between my legs, and he paced around the room.
“All right, Gina. Do you feel yourself in the room? Do you feel yourself naked? Do you see your legs? Do you see your vagina? Do you see your labia? Do you see a clitoris?”
This is my labia….This is my clitoris….This is my outer labia. This is my inner labia. This is my vulva….
As I said the words, I heard, “This is my.” Like, the “this is my” part was like, “This is MY body, and there it is. And there’s really nothing mysterious about it.”
I felt in control, and I felt…like the whole thing had been demystified.
I knew that I couldn’t have sex with the sex surrogate.
But I had been going to Bank of America across the street from the barn, which was my house, for quite some time. And there was this young guy. He was short. He had glasses….And I slipped him a note while I was making a deposit, and I asked him if he would like to come to my house for dinner.
I had tried to make my room look like a love den, and it just kind of looked like a freak show. I’d got this idea that I would get a fishing net, and I hung the net from the ceiling. Then, I’d painted the floor gold with this toxic paint.
So I made him some vegetarian shit out of the Moosewood Cookbook. I said, “Listen. I don’t mean to put you in an awkward position, but I’ve never had sex before. I’m 28. I wanna have sex right now. No pressure.” And he was like, “OK.” I think he just said, “OK.”
We drank a 40-ounce, watched some episodes of Twin Peaks, and then we were ready to…fuck.
As he got on top of me, I remember looking up at the net, and I just thought, “OK, this is stupid. I shouldn’t have cooked the cheddar cheese with rice in filo dough. That was dumb. And this song selection is dumb. And this is DUMB!” My delivery, when I told him I had never had sex before, that was bad. I wasn’t smooth. I was like, you know, “Can we have sex? And by the way, I’ve never had sex. So you’re my first one. OK, let’s go.” It’s not, I just like, I want a do-over. But then I was like, fuck it! We’re doing this shit. So turn up the Public Enemy.
The guy got on top of me, and he’s about to stick his dick in. And I was like, “This is a real dick. Oh my god. This is the real deal.” So I start breathing in and out, and I was like, “This is very scary. Breathe in. This is totally terrifying. Breathe out. This is really scary. Breathe in.” His dick went in a little further. “This is very scary. Breathe out. Oh my god. I think I’m gonna die. Breathe in. Oh my god. It’s probably not even in at all. Breathe out,” until a couple minutes had passed, and I was breathing in and out.
And I said, “I’m ready for you to go in.”
He’s like, “I’ve been in for two minutes now….”
And then I was like, “Oh my god! I’m the bomb! I don’t even feel it!”
And then I was like, “Can you go deeper? Can you slam it?”
I was so impressed with myself, and I felt like I could’ve gone bigger and harder. It was a good feeling, not so much for him, I think. I don’t think he called me back.
If you’re out there on Facebook, Peter, I really apologize for putting you in that position. It wasn’t right. But thank you for what you did! It was a good service.
My sex life got so much better, so much more interesting. I was so excited, and I just couldn’t wait to explore. Oh my god! I can fuck whoever I want! I can do all kinds of crazy, kinky foreplay, and it’s gonna lead to actual sex! I felt so free.
[music becomes jubilant]
SARAH: Kaitlin, that story is so beautiful and funny, but it’s also really tricky to report. How do you feel, listening back to it?
KAITLIN: I really believe in the work that we’re doing, and I really believe that by sharing your vulnerability, you’re making the world a better place, and you’re helping other people feel at home in the world. I believe in that so deeply that I think, you know, I feel like the scariness of going there or asking people to go there feels in service of something good and in service of something that is trying to, as cheesy as it is, “to make the world a better place.” I think that always provides me solace in scary moments.
SARAH: Today we’ve heard about all different kinds of pain. But there’s something that runs through all of these different stories: Women feeling like they won’t be believed. Like their doctors and friends and family will think that this pain in their body is actually all in their head. While medical cures for endometriosis and rheumatoid arthritis and vaginismus might be a long way off, there’s definitely something we can do right now: Believing women. That’s a prescription we can all write: Listening to women about our own bodies.
Popaganda is produced by the team here at Bitch Media. Bitch is an independent, non-profit feminist media organization. We’re entirely funded by our Beehive members, subscribers, and like-minded sponsors. So if you liked today’s episode of Popaganda, please become a member online at BitchMedia.org today. Let us know you liked the show in your order comments.
Our jingle is by Mucks and Owen Wuerker. Additional music was provided by Blue.Sessions. Look up their creative and minimalist sounds by going to Google and typing in Sessions.Blue. And the show is produced by Alex Ward at the studios of XRAY FM, an independent radio station in Portland, Oregon. Thanks for listening.