Episode 2: The Trust Gap
By the time Shelby was 22 years old, she'd seen not one, not two, not three, but twelve different doctors in search of a diagnosis. And this is not an uncommon experience for people with vaginismus, vulvodynia, and other vulvar pain conditions. In today’s episode, we’re taking a look inside the exam room to try to understand why so many people with vaginas that hurt have to seek out dozens of doctors before getting a diagnosis, let alone a treatment plan.
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Transcript
Episode 2: The Trust Gap
Episode
Noa: In July 2018, I hop in my parents’ car and start the hour long drive to see yet another gynecologist, my fifth doctor so far.
It's been a year of different doctors, numerous diagnoses and a bunch of new treatments: muscle relaxants, vaginal valium, physical therapy, pain meds, the list goes on. And nothing has worked. I still have excruciating vaginal pain with any kind of penetration. I'm exhausted. But I think maybe, just maybe, this new doctor will be able to help me.
I get to the hospital. A nurse walks me into one of many examination rooms and shuts the door. I sit down on the table and hear the familiar crinkle of disposable paper. I tell her about the pain - and the treatments I’ve tried.
Then the gynecologist comes in. She’s wearing a dark green dress and her straight black hair falls to her shoulders framing her face. We talk for almost an hour. She asks me question after question and makes sure she really understands what I’m saying. And then she says, “Well, I don’t think I can help you. There are one or two more tests you could get done. But I really just don’t know.”
When I get home that afternoon, Hannah, my roommate, asks me how the appointment went.
And I was like, it was amazing. We talked for an hour and she listened to me really carefully. But then she told me that she can’t help me.
Hannah: And I said, I’m so sorry to hear that.
Noa: And I was like, no it was such a great appointment.
Hannah: Wait, how could it be such a great appointment if if she didn’t give you a new diagnosis or any new treatment options?
Noa: Because after seeing so many doctors, this one actually believed me.
Noa: This is Tight Lipped, a public conversation about a private type of pain. I’m Noa.
Hannah: And I’m Hannah. We’re excited to be kicking off our first season. On this show we ask big questions about chronic vaginal and vulvar pain -- and pelvic floor dysfunction. We talk about painful sex. And shame. And the politics surrounding these conditions that we often keep secret.
Noa: Today, we’re swinging open the exam room door and taking a look inside. Why do so many people with vaginismus, vulvodynia, and other vulvar pain conditions have to see multiple doctors before they get an accurate diagnosis, let alone a treatment plan? What exactly is happening in that exam room?
We’ll begin today’s episode with Shelby Hadden. Shelby is a documentary filmmaker. She currently lives in Austin, Texas. By the time Shelby was 22 years old, she had seen 12 different gynecologists. Let me say that again, just in case you missed it. She saw 12 - 12! - gynecologists, before the age of 22.
Shelby: They never knew what to say.
Noa: Shelby’s story starts when she was 14 and got her period for the first time. She needed to use a tampon. So she bought a box, went into the bathroom, and tried to insert one.
Shelby: I just could not get them in, and not only could I not get them in, but it was also extremely painful to try. My Mom would say, just put vaseline on it, it's all about finding the right angle, and I would stare at the instructions from the tampon box, but every time I would just be in tears.
Noa: Shelby spent years skipping pool parties and not being able to do her normal activities, like running, when she was on her period. Finally, when she was 19 - Shelby got up the courage to talk to a doctor about it. She told the doctor that her periods were irregular - and that she also still couldn’t insert a tampon.
Shelby: She just told me that she wasn't concerned because I wasn't sexually active so she was not going to examine me.
Noa: The doctor suggested birth control pills to regulate her period, but didn’t address the pain. Her advice was basically: wait it out, there’s nothing wrong. This was the first of what would become a laundry list of medical advice Shelby received from doctors. Some of that advice left her feeling confused or really upset. When Shelby left the office she told her Mom about the appointment.
Shelby: My Mom's a registered nurse and she was like, she didn't even look at you? I was like, no. There was part of me that was relieved and thought I slipped through but my Mom's like, that's not okay. You know, we’ve gotta figure this out.
Meggin: I called the office and really I told them, I didn’t ask them, that we would be in the next day for a second appointment.
Noa: And this time, Shelby’s mom, Meggin, went too.
Meggin: It was very awkward and the provider was methodical. She didn’t try to dial it back or reset the tone or apologize for the previous day. I really thought the provider was kind of annoyed with the whole situation.
Noa: The doctor did a pelvic exam - she inserted a speculum and opened it in order to see inside of Shelby’s vagina. Speculums are much larger than tampons, so if a tampon was painful, a cold plastic medical tool in the shape of a duck’s bill, was much worse.
Shelby: Before that, I didn't really think my Mom believed me. I felt a little bit like she dismissed my pain, and that I was just being a baby about it. And when we went to that appointment together and the doctor examined me and I was like sobbing and squirming and the nurse was holding my knees down. That was kind of the turning point where I knew my Mom was like, oh, this is, this is real.
Noa: Up until that point, Shelby’s Mom had never seen her physically try to insert anything. Meggin would stand outside the bathroom door and coach Shelby. Or sit down with her and try to talk about it.
Meggin: It wasn’t a matter of not believing her, I just felt that she wasn’t comfortable enough to get past the uncomfortable feeling of actually inserting a tampon. She wouldn’t be the first person.
Noa: In the exam room, Meggin realized that this was not just a matter of discomfort - it was hard for her to see her daughter in so much pain.
Meggin: I just didn’t know the level of pain she was having. To watch her have a pelvic exam and have that kind of pain was pretty awful for me. So that was hard to watch and really made it more real to me, for sure.
Noa: After the exam, the gynecologist asked Shelby if she had ever been abused or sexually assaulted.
Shelby: And I said no, and she started strongly suggesting that I had but had repressed the memory. Which, also was like, a mindfuck.
Noa: So I just want to pause here to say this kind of reaction - implying that someone has repressed a memory of assault - happens frequently. One of the first pelvic health specialists I saw said something similar to me. She suggested that I must’ve had a traumatic experience as a child, and forgotten it. While it’s true that trauma and assault can cause chronic vaginal pain, this was not the case for me, and it was not the case for Shelby either. Ok, so then Shelby’s gynecologist recommended she try inserting a slender candle. And use the candle to dilate - or stretch - her vaginal walls.
Shelby: And, you shouldn't be putting candles in your vagina.
Noa: You really shouldn’t do that. But Shelby did try and it didn’t work. The pain was too extreme. At this point, Shelby didn’t know what to do. The candle thing hadn’t worked and she still didn’t have a name for what was happening to her; she didn’t have a diagnosis. So she saw another doctor. And another, and another one after that.
Shelby: I had many doctors tell me that I should just drink alcohol, just have a glass of wine when you want to hook up with someone.
Noa: This is also a bad idea - alcohol is not medicine. On her 21st birthday, Shelby went to yet another doctor’s appointment. She told the doctor that because of her pain she couldn’t have penetrative sex.
Shelby: And she said something along the lines of, that's so great to hear. Everyone I see is having sex all the time. And you're so young and you shouldn't be having sex.
Noa: This did not comfort Shelby. She’d come to this doctor because the pain was impacting how she felt about herself, about her body, and her sexuality. She wanted support and answers.
Shelby: I just remember looking out the window and crying because she was like slut-shaming all these girls. And I knew she wasn't going to be any help to me to be able to have sex.
Noa: The confusion and search for answers was taking a toll on Shelby’s mental health. But another doctor told her it was actually the other way around. That her mental health issues were the cause of the pain. And he prescribed her an SSRI, which is a kind of drug usually recommended for depression and anxiety disorders.
Shelby: He just told me I was really anxious and depressed and that that would cure it. And it did not at all.
Noa: So after years of doctor’s appointments, Shelby still did not have a diagnosis. None of the doctors she’d been to acted like they believed her problem was real. So she had no explanation for what was happening in her body - and for why any kind of penetration was so painful.
Shelby’s actually not the only one to have this experience of being passed from doctor to doctor - and having her pain questioned or dismissed. There was this study done in 2013. It was in the Journal of Sexual and Relationship Therapy. They figured out that 30% of women who felt pain with any kind of penetration had to go to over 15 doctor’s appointments before getting diagnosed. That means, Shelby’s experience wasn’t an isolated incident - it’s actually pretty common.
Noa: Here’s Dee.
Dee: I think last time I counted, so these are like doctors that I’ve seen more than once...I think I met 14 doctors.
Noa: And Hannah.
Hannah: So I've been to 7 different physical therapists. And then for doctors it's one, two, three....five, six, seven, eight? Eight doctors.
Noa: And Shannon.
Shannon: Two OBGYNS, a pelvic floor therapist, a urologist, a GI doctor, a naturopath.
Noa: And as for me? I’ve seen two primary care physicians, two gynecologists, two pelvic health specialists, a psychiatrist, three physical therapists, and one specialist in vulvar and vaginal disorders. Eleven medical professionals in two and a half years. So, why is this happening? Why are healthcare professionals dismissing patients like Shelby? Maya Dusenbery is an author and researcher. And she wrote this book called Doing Harm: The Truth about How Bad Medicine and Lazy Science Leave Women Dismissed, Misdiagnosed, and Sick. She calls this dynamic the “trust gap.” How medical professionals often don’t trust women’s accounts of their own pain.
Maya Dusenbery: This tendency to not trust women’s own self-reports of their symptoms. You know, subjective symptoms like pain, or fatigue, or nausea, or dizziness.
Noa: Maya talked to many women who had the same experiences in the doctor’s office.
Maya Dusenbery: I was truly amazed how many stories I heard from women who had painful sex for a range of reasons who were told that the prescription was a glass of red wine to loosen you up.
Noa: It wasn’t always said explicitly - but many of these women’s symptoms were attributed to something psychological or emotional. And Maya says that the sexism women experience in the doctor’s office is subtle enough that it’s kind of hard to recognize until you see it as part of a larger pattern.
Maya Dusenbery: When you’re just seeing your own experience in isolation, it can be easy to say, well maybe it wasn’t that bad or how do I really know if a male patient would’ve been taken more seriously.
Noa: I’ve definitely felt that way. But this isn’t new. This trust gap has a long history. One you might be familiar with. It’s a medical category called hysteria. Which, by the way, in ancient Greek, means “suffering in the uterus.”
Maya Dusenbery: In ancient times early Greek medicine attributed a range of symptoms to a “wandering womb.”
Noa: A wandering womb was this idea that the uterus could travel all around someone’s body - putting pressure on their organs and causing illness. Meaning, the very fact that you had a uterus meant you were prone to hysteria. Here’s another author, Paula Kamen, who also researches chronic pain and gender bias.
Paula Kamen: So it’s basically tracing these maladies to the womb so that was a big excuse to keep women out of colleges or jobs you know saying that if they tax their brains too much then it’s gonna affect their womb.
Noa: Paula said that during the Victorian era, hysteria impacted women’s social status. But then things changed. Doctors figured out that no, actually your uterus can’t travel all around your body.
And when Freud came on the scene, hysteria became more of a psychological condition.
Here’s Maya again:
Maya Dusenbery: The problem is that there’s then this tendency to just assume that when we can’t explain something in physiological terms, that it must be rooted in the mind.
Noa: If a patient reported “unexplained symptoms” then a doctor could attribute the symptoms to something the patient was causing unconsciously. All sorts of symptoms were classified as hysteria.
Paula Kamen: There’s at least 80 autoimmune diseases and they mostly affect women and it’s just been in the last 30 years that they’ve been considered not hysteria.
Noa: This can happen on an individual level - like with Shelby, who went from doctor to doctor starting at age 19. When the doctors didn’t see anything wrong with her physiologically, they told her it was “all in her head.” “You must be anxious or depressed.” “Maybe you were assaulted.” “Drink a glass of wine - relax.” Here’s Maya again.
Maya Dusenbery: Any symptoms that are not currently attributable to a physical underlying cause, are seen as psychogenic, in this very simplistic way that is not really rooted in a kind of nuanced understanding of mind-body connection, which is of course very real.
Noa: So when Shelby was visiting 12 different doctors - it wasn’t just her and the doctor in the room. There’s a whole history sitting in the corner of that exam room - a history that leads medical professionals to categorize women’s pain as something rooted in their minds, something that stems from an emotional condition. And therefore, something that’s not real.
This could be one reason why so many of Shelby’s doctors saw her symptoms as psychological at best, and imaginary at worst. So, ultimately, not a single doctor believed that Shelby had a real condition - or diagnosed her. She figured it out herself! From a college textbook.
Shelby: I was reading the textbook one night and Vaginismus was in there. And it was described as involuntary contractions of the pelvic floor muscles.
Noa: The textbook was from a Human Sexuality class she was taking.
Shelby: Reading that definition and that word really clicked with me and I instantly thought that’s what I have.
Noa: Instead of waiting for a doctor to diagnose her, Shelby took matters into her own hands. She diagnosed herself with Vaginismus. When she went to a new gynecologist, to get a pap smear for the first time, Shelby told the doctor that she had vaginismus. And, the doctor believed her. The gynecologist told Shelby that a pelvic floor physical therapist had dropped by just the day before and left some pamphlets. The doctor didn’t know much about physical therapy but suggested that Shelby take a look. So she booked an appointment.
Shelby: It was such an amazing day. I’m getting emotional just thinking about it. Finally someone validated everything that I had experienced.
Noa: The physical therapist did a careful exam - and asked Shelby to rate her pain. She helped her breathe and checked in with her throughout the appointment.
Shelby: I remember her telling me that I was going to one day be able to use a tampon and one day be able to have sex. And she said, I promise you. And I remember thinking, well I don’t know if you can promise that.
Noa: The physical therapist was right. It took many hours of hard work stretching and learning how to release her muscles. But she got there.
By the time she moved to Texas for grad school, she was finally able to use a tampon.
Shelby: [laughs] That was a big deal. I loved going to the grocery store and buying tampons, it was such a source of pride.
Noa: And not just that.
Shelby: I was able to have sex at the end of 2016. I had sex for the first time.
Noa: She doesn’t need to go to physical therapy anymore - at least not regularly. When necessary, she can stretch and dilate on her own.
Shelby: But for the most part, like I can use a tampon or have sex whenever I want. Like 95% of the time.
Noa: She credits her pelvic floor physical therapist for treating her. And for helping her figure out what was wrong and how to fix it.
Shelby: I love pelvic floor physical therapists. I think they’re just the greatest people in the world. They’re doing the Lord’s work.
Noa: Today Shelby looks back at herself as a patient. And tries to figure out why it took her so long to get the treatment she needed.
Shelby: Ugh, I did the wrong things. I should’ve found somebody like this sooner. But the thing is you’re not a medical professional and you’re going through like every avenue that’s being presented. And trying things. Because the people who are supposed to be experts are telling you to try them.
Noa: Shelby documented her experiences in a film called Tightly Wound - which follows her story as she searched for a diagnosis.
Shelby: Between writing Tightly Wound and starting to become public with it and then, all my work in PT, I think all of that really helped me on my healing journey. When I was a younger woman, I didn’t have the confidence to be an advocate for my health, my body, and my sexuality. I didn’t know how to stand up for myself, and I didn’t know how to say, no that’s not okay I’m not gonna accept that answer. Or to push back or ask follow-up questions.
Noa: She feels like she acts differently now when she goes to the doctor. She knows how to advocate for herself. Like Shelby, I changed how I acted after going to doctor after doctor. Let’s go back to that appointment in July of 2018 - the one where the doctor believed me but didn’t have any answers.
The morning of that appointment, I prepared as if I were going to a job interview. I thought carefully about what I was going to say. I brought a notebook - and a folder with my medical records. I remember thinking:
What will make me look and sound like someone who has to be taken seriously? What will make me a “good” patient? What will make me worth spending time on? What will make me believable?
I walked in with my records and explained my symptoms in a way that was clear and compelling - and they listened to me. The doctor believed that I was really in pain. So I left feeling proud and relieved. I had done the right preparation, and succeeded in performing well as a patient.
But should people have to do all this just to be believed? Maya Dusenbery doesn’t think so.
Maya Dusenbery: I think that people should be able to be totally uninformed patients, unempowered, know nothing about their conditions, do no research whatsoever, and just be able to go to the doctor and count on the fact that their doctors who have gone to medical school and are the purported experts here, are well-equipped to treat them.
Noa: Maybe you shouldn’t have to be good at advocating for yourself in order to get the right treatment. Maya Dusenbury: I don’t think that the onus should be on individual people at all to kind of compensate for the medical system’s failures. So it’s just, the burden on individual patients here is just astronomical.
Noa: I had all sorts of privileges walking into the hospital - privileges that gave me credibility that unfortunately other people don’t get automatically. I had the credibility of being employed, college-educated, coming in with good health insurance - and being white. But not everyone has the time to be a professional patient. The ability to take off work and go see doctor after doctor. The money to spend on trial and error. The educational background to do your own research.
In Paula Kamen’s book, All in My Head, she compares the doctor’s office to a courtroom.
Paula Kamen: You feel more and more like you’re on trial the more doctors you to go. You can’t win if you show quote pain behaviors like clutching your head it shows that you’re being dramatic, if you don’t have any pain behaviors you’re sort of understating it, they don’t believe you. So it’s basically no win when you’re on trial like that.
Maya Dusenbery: But at the same time, you can’t push too aggressively because you don’t want to come across as that overeducated patient who, you know, thinks they know more than the doctor, and just need to get off webMD. And so I think that there’s this tightrope that women have to walk.
Noa: Many patients find themselves constantly stuck in this catch-22 trying to figure out how to present their pain. There is even a Norwegian study published in 2003 called, “It’s Hard Work Behaving as a Credible Patient.”
By the time of the July 2018 appointment, I had figured out how to walk this tightrope. I was a credible witness in my own vaginal pain trial. And still, I walked away with no answers.
So what do we do with this information? Are doctors to blame for women’s pain? It’s not that simple. Doubting women’s stories and experiences is unfortunately part of our society. We see this in how stories of assault and harassment are treated. In how women’s narratives are often doubted or questioned. This issue is not unique to doctors by any means. There are many doctors doing the best they can. And there are doctors who fight for their patients’ needs. There are doctors who weren’t taught about these conditions and are trying to educate themselves.
It took hours and hours of my own research on online forums, reading articles and books before I learned that there are actually doctors who specialize in these conditions. Not being believed by medical professionals made me feel like I was isolated and losing my mind, but I then learned that there are doctors who not only believe, but also diagnose people like Shelby and me.
Dr. Bat Sheva Marcus, who has a PhD in Human Sexuality, is the Clinical Director of Maze Women’s Sexual Health, in New York, which treats women with a whole host of issues related to sex - including pain.
Bat Sheva Marcus: To be able to diagnose pain properly you gotta be in that exam room with a person who’s like getting up close and personal with your vulva and your vagina.
Noa: Dr. Marcus and her colleagues know that every patient first needs to be correctly diagnosed. There are different causes of vaginal and vulvar pain - and very specific conditions. At Maze, they first take a detailed history. Then,
Bat Sheva Marcus: The nurse practitioners will do a complete thorough exam, they’ll do what’s called a q-tip test to kind of touch or rub the specific area of the vulva and the vagina to see what is actually hurting.
Noa: Next they replicate the pain as gently as possible to figure out where it is and what’s causing it - if it’s muscular, hormonal or neurological. The clinicians spend a full hour and a half with each patient.
Bat Sheva Marcus: They will use a vulvoscope to see if there’s skin irritation or infection of any sort, they will try to actually insert something, a dilator to see whether that hurts, and where and how that hurts.
Noa: Unfortunately, Shelby, like most of us, did not have someone who did this kind of exam and tried to understand what was causing her pain. Instead, she had to do her own research and diagnose herself.
When I meet people who share my experience of vaginal and vulvar pain, I always recommend they see a medical professional. Or go back and fight for themselves if they weren’t believed the first time. Because, in our current reality, we need to advocate for ourselves. To do our own research. To prepare our cases for trial. And, at the same time, I hope this isn’t the reality in the future for people with vaginas, people in pain, people whose credibility is doubted,. Because so many of us don’t have access, time, or resources to perform well as patients.
We need to reckon with the gender bias that exists in the exam room. Because people with vaginas that hurt shouldn’t have to prove that their pain is real. Or that their cases are credible - in order to be believed, diagnosed, and treated.
Noa: If you want to learn more about Shelby’s story you can check out her film on our website - tightlippedpod.squarespace.com. We want to share your stories as well. We’re currently looking for stories from individuals who have experienced racism while seeking treatment for vulvar, vaginal or pelvic pain. If this sounds like you or someone you know, pitch us on our website!
Hannah: Hannah here again, the co-producer of this podcast. There’s so much more to discuss when it comes to the trust gap and to experiences in the exam room. And we’re going to keep this conversation going in our next episode.
We still want to know: what makes someone seek medical care in the first place? What about all of those people who don’t ever try to get diagnosed? And, how do you know if something is or isn’t supposed to hurt?
Here’s a quick listen from our next episode:
Maura: I started training as a competitive irish dancer so having um hip pain and knee pain and back pain that was all just a part of my identity as a dancer, part of the story of me making art. And that meant that I didn’t really ever interrogate what was happening.
Hannah: Thanks for listening and we’ll be back in a month with the next episode of our season. And, we really value your reviews and comments and love hearing from you! So, if you haven’t done so already, we hope you’ll take a minute to rate and review us on iTunes - it’s a short and easy way to support the podcast and spread the word.
This episode was produced by me, Hannah Barg, with Noa Fleischacker. The editor is Arianna Skibell. We also received editorial support from Ellen Mayer and Joel Shupack. Thank you to Daniela Tolchinsky, Adina Brin, and Hannah Weilbacher who gave us feedback on drafts. We’re also incredibly appreciative of the professionals who gave their time and expertise to this episode: Maya Dusenbery, Paula Kamen, Bat Sheva Marcus. Thank you again to Gaby Escovar for our logo and Marty Kezon for our website. This season is supported by the Dorot Fellowship Alumni Leadership award, which has enabled us to continue to do this important project. All the scoring you hear was from Blue Dot Sessions.
Thank you all so much and we’ll see you next month!