Episode 10: The DSM
In 1991, Marjorie Wantz made headlines when she died through physician-assisted suicide. She had suffered for years with chronic vulvovaginal and pelvic pain. Marjorie hoped that an autopsy would prove what she’d insisted all along: that her pain was real. But, in the aftermath of her death, the medical community painted Marjorie’s condition as psychological, and imaginary.
Why did doctors still not believe Marjorie Wantz even after she took her own life to stop the pain? In today’s episode, we’re exploring how and why vulvovaginal pain became understood as a psychological issue. We hear from Hannah Srajer, who researched the development and evolution of “vaginismus” as a diagnosis over the last 100 years.
Resources:
Imperfect Intercourse: Sexual Disability, Sexual Deviance, and the History of Vaginal Pain in the Twentieth Century United States by Hannah Srajer
Watch the video of Hannah’s presentation - Passcode: P75$E1zr
Credits:
Writer: Angela Johnston
Editor: Ava Ahmadbeigi
Executive Producer: Hannah Barg
Associate Producers: Sararosa Davies and Delilah Righter
Production Assistant: Kalaisha Totty
Art: By Sami Aryel
Transcript
Content Warning: Before we jump in, I want to give a quick heads-up. This episode briefly touches on suicide and sexual abuse. Please listen with care.
Episode:
Hannah: So I was literally on the the physical therapy table, getting, pelvic floor physical therapy. You know, naked from the waist down.
Noa: This is Hannah Srajer. She has pelvic floor dysfunction. One day, when Hannah was at physical therapy in Chicago, her PT told her a story she hasn’t been able to forget.
Hannah: I was saying, well, do you know any, like, are there famous people who have this condition? Like, has this been in the media? This has been in the news, like what, you know? Um, and she was like, oh, well, you know, Dr. Kevorkian.
FRONTLINE: Marjorie Wantz - I’ve been told they can’t do anything, every surgery has made me worse. Especially the last one.
Newscaster: How many have you had?
Marjorie Wantz: 10.
FRONTLINE: Dr. Kevorkian - I’ve known her going on 2.5 years now and you notice I haven’t done anything with her because I knew there was more to be done.
Noa: Hannah’s physical therapist told her about Marjorie Wantz. A woman who had chronic pelvic pain. She was a patient of Dr. Jack Kevorkian. Who was known in the media as Dr. Death because he was a proponent of euthanasia.
Hannah: her example, of a well-known case of somebody with this condition, with somebody who made the news for, um, Being a patient in a assisted, a physician assisted suicide case.
FRONTLINE: Marjorie Wantz: Has it gotten worse or is it about the same? It’s gotten worse, I get a half hour, an hour sleep every night with all the pills I take. I got to bed with sleeping pills just to get out of pain. That’s the only time I get out of pain, when I sleep.
Hannah: There was something so real and clear about the pain and suffering that people with these conditions experienced that it became this case, that this person decided to take her own life.
FRONTLINE - Newscaster: Despite her pain, Marjorie Wantz was not terminally ill, authorities had tried to institutionalize her…some felt her pain was psycho somatic.
Hannah: I became really obsessed with the case because I felt like it was transmitting so many messages about what it's like to live with these conditions and navigate the world with these conditions.
FRONTLINE: And later when the medical examiner, Dr. L J Dragovitch, conducted Marjorie’s autopsy, he could find no physical cause for her pain. “This pelvic pain would’ve been some type of phantom pain coming from her head, not from the lower part of her body because she didn’t have anything from there.”
Hannah: I did a really deep dive into her and listened to the tapes, and just like learned everything I could about her.
Noa: Hannah needed to find out what happened to Marjorie Wantz. It felt tied to understanding her own story.
Hannah: I had a series of very traumatic experiences with medical providers and, um, sort of working through my own relationship to my chronic pain when I was pretty young, I was in high school.
Noa: Today, Hannah is the Organizing Director for Tight Lipped. And working towards a PhD in history at Yale.
That day on the physical therapy table, Hannah learned about the case of Marjorie Wantz, a woman who suffered from vaginal pain over 30 years earlier. And learning about Marjorie Wantz sent Hannah down a deep rabbit hole.
Hannah: I sort of came to this research question, which is how did vaginismus become coded as a mental disorder. through the ways that getting reacted to by physicians when I was in high school. Right. Um, physicians saying, well, maybe it's in your head. Maybe you're just stressed
Noa:. She couldn’t stop wondering, why did doctors still not believe Marjorie Wantz, even after she took her own life to stop the pain?
In her research, Hannah kept coming back to one particular diagnosis used for women like Marjorie - vaginismus. And how it became coded as a mental disorder.
This is Tight Lipped, a public conversation about a private type of pain. I’m Noa.
On this show, we talk about vulvovaginal and pelvic pain. We share stories about painful sex. And shame. And the politics surrounding these conditions that we often keep secret. We uncover why it’s so hard to get diagnosed and treated – and what we can do to change that reality. Our podcast is part of a grassroots advocacy organization, fighting for patients with these conditions to get the care they need and deserve.
Today we’re going all the way back in history to hear about how and why vulvovaginal pain became a psychological issue. And how it ended up earning a spot in the American Psychological Association's Diagnostic Manual, also known as the DSM.
Noa: Let’s get one thing out of the way, a lot of people are diagnosed with vaginismus – because it’s used as a catch-all diagnosis for various vaginal pain conditions. And the term is still used today despite being over a century old. And having a long history that’s wrapped up in pathologizing pain.
Although it ended up in the DSM, the diagnosis wasn’t originally seen as psychological ,
Hannah: So vaginismus is coined by James Marion Sims, who's seen as the father of American gynecology. He's also infamous for doing a lot of experimentation,on enslaved women, Betsy Anarcha and Lucy without anesthesia, um, who also acted as nurses. So it's a very old name.
Noa: Hannah researched and wrote about this history in a paper titled: Imperfect Intercourse, Sexual Disability, Sexual Deviance, and the History of Vaginal Pain in the 20th Century United States. Her paper won an award and was published in the Journal of American History.
Dr. James Marion Sims coined the term vaginismus based on what he was observing in his patients. It literally translates to spasming of the vagina.
Hannah: That's what it means. It's just a descriptor.
Noa: Meaning a diagnosis that describes the problem, but doesn’t explain the actual cause. This was back in the 1860s.
A few decades later, Sigmund Freud founded the field of psychoanalysis. He studied the unconscious mind, repressed fears, and stages of psychosexual development.and his theories provided a whole new lens for how vaginismus was understood.
And by the 1920s, psychoanalysts began referring to vaginismus as a disorder related to faulty psychosexual development. Hannah told me about this German Psychoanalyst named Karl Abraham, who was a student of Freud.
Hannah: So he writes this 1920 paper that's pretty impactful. Um, and it's called manifestations of the female castration complex. And it's this idea that if young girls don't adequately process, the fact that they lack a penis, That emotional state, the feelings of rage, guilt, and envy. they're going to develop this, this castration complex that will produce vaginismus. So it's this fantasy of castrating, the man of literally like taking, robbing the penis.
Noa: manifestation of the female castration complex? Hearing this description for the first time…it was hard for me to even wrap my head around. The idea that I have pain with tampons and pelvic exams is because I am filled with rage that I don’t have a penis?
And it didn’t stop at the idea that women have pain because they’re jealous of men. Other psychoanalysts took it even further.
Hannah: It's also about this relationship that we have with genitals and gender. if it's about a vagina, it has to do with me being a woman. This theory that people with vaginismus, they have some issue with their feminine role, but this is a, this is a physical manifestation of their, um, psychological difficulties with being a woman.
Noa: This was reflected by the medical establishment. It was even common to think that gynecologists should be trained in psychotherapy.
Hannah: You know, there were also doctors who totally thought Freud was full of shit. And were like, this is ridiculous. This is stupid. I can't believe we're publishing this. There's no foundation to any of this.
Noa: Some resisted the psychological reasoning, and the psychological quote unquote ‘cure’. But Hannah told me that even the physical treatment alternatives weren’t much better than the Freudian methods.
Hannah: Cutting the vaginal opening. Dilation. So dilators still used today. another treatment was knocking the woman out and having her have sex while unconscious.
Noa: By the middle of the 20th century psychological theories were shifting. They were moving away from Freud and his idea that vaginismus is caused by stunted psychosexual development. The new theories were based on behavioral models. Starting from the idea that all behaviors are learned responses, and that behaviors can be retrained.
Hannah: And you see something really weird happened, which is, it's not that vaginismus as a psychological disorder goes away, it just sort of transfers. It just goes along with the shift. And that's when Masters and Johnson comes in.
Noa: Vaginismus was seen as a learned fear response to sex. Largely, because of Masters and Johnson.
William Masters and Virgina Johnson were sex therapists. Celebrated by second wave feminists, they wrote about pleasure and the female body in a new and exciting way. And they’re pretty well known. In one of their books, they write about vaginismus. They reject Freud…
Hannah: And instead they say that vaginismus is caused by sexual trauma, strict religious upbringing, prior pelvic pathology, um, and homosexuality.
Noa: Other clinicians caught on to this idea that vaginismus was caused by queerness or homosexuality. They even conducted psychological tests on vaginismus patients. Hannah looked at these studies in her research.
Hannah: Basically in one study, a group of psychiatrists and gynecologists had pelvic pain patients draw figures of a man and a woman standing next to each other, and this was a test. This is a psychological test to identify queerness, basically.
Noa: If a patient’s drawings of a man and a woman looked similar to each other, that would be interpreted as an indication that they were gay or gender queer.
Hannah: So like if I drew a man and a woman, two stick figures and they looked identical, that would be a sign that I am a homosexual….It's, it's a really bizarre and interesting way of measuring, um, allegedly queerness.
Noa: Overall, this was an idea that Masters and Johnson, the popular sex therapists, promoted. In addition, they said that vaginismus is easily cured, 100 percent of the time. Through things like sex therapy, couples counseling, and something called systematic desensitization - which is basically exposure therapy.
Hannah: They see vaginismus as like this learned fear, anxiety.
Noa: Masters and Johnson’s work was extremely widespread and influential.
Their ideas about vaginismus and vaginal pain even made it into the bible of psychological disorders: the DSM. In 1980, vaginismus was added to the section on psychosexual dysfunctions.
Hannah: So I think what is fascinating is how the DSM brings in this condition, like in the eighties, right? Like this is, this is the Freudian. Psychoanalysis is not mainstream and American psychology by 1980, by any means. And yet you see that there are these traces of. Traces of the theories and the understandings of how sexual pain is a psychological disorder. You see that coming very clearly in the 1980s.
Noa: The criteria for the diagnosis stated that vaginismus is an involuntary spasm, interfering with intercourse. And once it was in the DSM, the association between psychology and vaginismus would follow the condition until today.
In 2013, it was given a new name: genito-pelvic pain/penetration disorder -- or GPPPD. It’s a mouthful, but I’ll use that acronym from here on. This updated definition includes fear or anxiety about vaginal penetration. And tensing of the pelvic muscles during attempted intercourse.
Noa: The DSM is like an encyclopedia for mental health practitioners. And it’s pretty significant in our society and culture. The diagnoses included in it often reflect the era of publication. Meaning, it’s gone through a number of different editions – and it’s shaped by our current understandings of mental health.
Culturally, the fact that vaginismus still has a place in a major psychological diagnostic manual is telling.
Hannah: The fact that penetration is in the name of a psychological disorder is profoundly disturbing to me. Like, what does it mean for me to be diagnosed as having a penetration disorder? Right. what's the subtext of that? Right? So it talks about queerness, some talks about gender presentation, there's also a lot of ways in which if I, if my inability to be penetrated is a psychological condition, then is that not deeply pathologizing to me as a person?
Noa: Sometimes what ends up in the DSM is problematic and controversial. Just the way it is worded has serious implications.
The treatment listed for vaginismus – or now GPPPD -- is STILL systemic desensitization – or exposure therapy. The same treatment Masters and Johnson suggested all the way back in the 1960s and the 1970s.
I want to bring this back to how it impacts real patients. It might seem like a list of criteria in a medical diagnostic manual doesn’t matter that much. But it does. At Tight Lipped we hear all the time from women and patients who are still being told that their condition is only psychological. That if they just drink wine – or sedate themselves – they’ll be fine.
Here are a couple stories from our community members.
Community Member 1: I remember being in so much pain, bawling my eyes out. And my doctor just kind of looking up. Shocked saying, wow, like you really are in pain and she said, I'm going to keep going. and didn't stop. Just gonna push through. even though I had tears streaming down my face.
Community Member 2: A couple years agoI went to the student health service for this really mysterious severe pelvic pain…I really cried a lot because I was in so much pain. they referred me to an immediate mental health intervention..they spent a lot of that time asking me whether my parents were actually okay with me being bisexual.
Community Member 3: I had waited to have intercourse until I was married. It was a horrendous, traumatic experience. I called my gynecologist office. And I got a PA on the phone who said to me that sex is just for men anyway. When I saw my gynecologist, she attempted to insert a speculum and I screamed and cried and she just seemed exasperated with me kind of like just this look of shock and kind of threw her arms up in the air and said, It should just be like, I'm touching your thigh like this.
Community Member 4: I told her I had no memory of anything traumatic ever happening. And she replied well, yeah, you've most likely blocked it out. She sent me on my way with a handful of sexual abuse resource pamphlets, and I spent the better part of that year interviewing my parents and racking my brain, trying to remember a traumatic event that never happened.
Noa: While we can’t trace these stories directly to the DSM, it’s clear the history we just learned – from J Marion Sims to Freud to Masters & Johnson – still influences medical providers today.
Keeping vaginal pain in the DSM legitimizes medical providers when they say the pain is all in your head, or that you don’t need medical treatment. Of course, we know that being in pain can contribute to a cycle of depression and anxiety. Psychological issues and stress usually exacerbate physiological ones.
But, that doesn’t mean the pain will disappear just by working through mental health concerns.
Hannah: And this is definitely stigmatizing to have genital pain, penetration disorder be in a manual of mental disorders. And it's about it being in your head being sort of you're hysterical, you're stressed. You're, you're having a hard time in your marriage and it's like, no, you know, not sure maybe that's contributing where maybe that kicked it off… but like it's diminishing people's pain.
Noa: And a lot of times vulvar and vaginal pain IS NOT just about sex. Take Hannah Srajer’s own experience.
Hannah: My main issue is that I have urinary symptoms. It feels like I have a UTI all the time and that chronic pain and discomfort is what is shaping my life. And there's no room for understanding. The vagina is part of a structure of the pelvic floor, which contains the bladder and the colon. You know what I mean? In the colon and all of these other important structures that are related, it just sort of isolates the vagina as, as a deeply gendered, like separate part of your body. That's not attached to anything else.
Noa: So, where does this leave us today? Obviously, it's not easy to change an entire history of psychologizing vulvovaginal pain. But I have to wonder whether the DSM is making it harder to move past that history and towards a more complex understanding.
Noa: We called up Dr. Michael First, a professor of clinical psychiatry at Columbia University, and a long-time editor of the DSM. We wanted to ask his opinion – does Genito-pelvic pain/penetration disorder really belong in the DSM?
Michael First: if it wasn't there at all, if somebody were to propose it to be added to the DSM at this point, it probably wouldn't have gotten in.
Noa: Keeping it in the DSM might be doing more harm than good. And maybe it’d be an easy case to make if it wasn’t already in there. But getting a condition out of the DSM is way more difficult.
Michael First: And that's because there's an issue of disruption, you know, getting rid of something, you know, the DSM is all you get always trying to do kind of balance the good in the bad of the cost of the benefit So getting rid of something always has the risk of really creating havoc in them, in the healthcare system, insurance companies, whatever.
Noa: One risk of removing it is that the condition won’t be considered legitimate by the medical system if it doesn't have a diagnostic code with numbers and letters. It’s important to say that there are some practical reasons for having GPPPD -- in the DSM. It can be helpful for getting insurance to cover treatment.
And this issue has come up before – with other conditions. Take this example of gender reassignment surgeries. Because it wasn’t coded in the DSM, Dr. First says the IRS actually sued people for considering the surgery as a medical expense.
Michael First: that's why it's things are in Are not of the same level of validity as other things that are in there because they are very hard to get out. And I think if you look over time, it's been really a very, very few number of disorders which have been removed from the DSM over its life.
Noa: But there are some. Homosexuality was removed from the DSM in 1973. And transgender activists are currently trying to get gender dysphoria out as well, despite the problems it may cause with lack of medical codes. So, Dr. First suggested some other ways of changing the DSM without complete removal. Like adding a note that specifically says this isn’t a mental disorder, like there is for learning disabilities or sleep disorders.
Michael First: There's precedent for things being in the DSM that aren’t mental disorders, but so they could keep it in the DSM, but in a special spot. So that's something that's under discussion. And I would suspect maybe in the next number of years, that might be actually done as a way of making the statement that we, we don't, we don't want people to think just because it's in the DSM that we consider it to be a mental disorder.
Noa: If information or a diagnosis in the DSM is actually causing harm, that’s an argument for removing it.
Michael First: Whatever the theories that people use now for why it's psychological or were completely wrong, and we're hurting people by that, continuing with that theory, then you could make a very good case for making that change.
Noa: You could argue that we are hurting people. Now, and back then -- when Marjorie Wantz was trying to convince doctors and her own family to believe her.
Hannah: Bringing it back to Marjorie Wantz, that's why the story was so powerful to me because I was like, here's somebody who's saying, like I'm in pain, nobody's helping me. And I'm going to take matters into my own hands.
Noa: Marjorie’s story is devastating. She shouldn’t have had to fight so hard for people to believe her. It’s a reminder of how much the American medical system has failed people with chronic pain.
Here’s a clip from the documentary we heard at the beginning of the episode:
FRONTLINE: She was in the worst pain. She had the prospect of going through another 10, 20 years of pain. That was unimaginable. Yeah, I see her in her pain everyday. Uh, Marjorie's husband tells Kevorkian his wife often screams through the night in pain. And that she has tried to kill herself several times.
Noa: Hannah Srajer doesn’t think about Marjorie as much these days s. Her own pain and her relationship to it has shifted. But there’s one image that has stuck with her after all these years. It’s a photograph of Marjorie, sitting on a chair.
Hannah: and she is in a blue dress, a pale blue dress, //And she is very clearly laying kind of, sort of back on the chair. Her torso isn't upright. And she's staring at her hands. // and you can tell from.the way that she is positioned that she's in a lot of pain and she's in a lot of distress. // she's not able to fully like, sit on her pelvis and have her torso weight be on her pelvis. That photo really stuck with me and I think, I think about that photo even more than I think about Marjorie wants or that's the way that I think about her, is that just clear, visible expression of, of physical discomfort.
Noa: Marjorie Wantz died from assisted suicide over 30 years ago. And while we have made some strides in diagnosing vulvovaginal pain…patients with vaginismus continue to be told many of the same things that Marjorie was.
Hannah: Not enough has changed since she died. Um, and I think that something that I feel very strongly tight-lipped feels very strongly. Um, is that nothing is really going to change unless patients come together and advocate for some real serious systemic changes in research funding, in physician education, in, um, even med student education.
Noa: But nothing changes on its own – and that’s why patients have to come together, and speak up.
Hannah: I think what would've made a difference is if she had a community of people who she felt like understood her and had similar experiences to her.
But I think that also speaks to why an organization of people moving together, um, is so much more powerful than just one person. I think like the thing I would be most curious about is how she would respond to knowing that there are so many people out there who've had very similar experiences to her, because that is something that blows my mind every single time.// I wondered what would've happened if some stranger off the street like me , sat down with her for coffee and said, Hey, you know, Have you heard about this?
Noa: One reason Marjorie’s story is so tragic is because it didn’t have to end that way. If there were others who supported her, and told their own stories. If there had been a strong and powerful community of patients refusing to have their pain dismissed or ignored.
By coming together and taking collective action we can build a world that is definitively different, and better, than the world that neglected Marjorie Wantz. A world where patients in pain are believed, taken seriously, and given the care they’re searching for.
Credits:
Thanks for listening! To join our community, sign up for our newsletter at tightlipped.org or find us on instagram. Check out the episode page on our website to find articles and info that we referenced in this story.
The legal and historical research came from Hannah Srajer’s paper entitled Imperfect Intercourse, Sexual Disability, Sexual Deviance, and the History of Vaginal Pain in the 20th Century United States. We’ll share Hannah's paper and her recent presentation to the Tight Lipped community on our episode page.
This episode was written by Angela Johnston and edited by Ava Ahmadbeiji [Ah-va Ach-mad-bay-ghee - hard G]. It was executive produced by Hannah Barg with the help of Delilah Righter, Sararosa Davies, and Kalaisha Totty. We received additional support from Judah Kauffman and Sela Waisblum [Sell-uh Weiss-bloom].
Special thank you to Bob Mattner, Scott Mattner, Dr. Michael First, Sarah Ponce, Caitie McCormack, Angie Born, Jennifer Huff, Lauren Seagren, Navah Fried, Brittany Browning .
Our episode art this season was designed by Sami Aryal. The music you heard was from Blue Dot Sessions.
If you’d like to contribute to our work, you can make a donation on our website. We’re building a grassroots movement by and for people with chronic vulvovaginal pain and we hope you’ll join us.