Episode 1: Secrets
For as long as Noa can remember, penetrative sex -- actually any kind of penetration (tampons, pelvic exams, etc.) -- has been so painful it’s physically impossible. And, until very recently, she kept it secret from almost everyone she knew. Where and how do women like Noa learn to keep their pain secret?
Transcript
Episode 1: Secrets
Episode
Noa: I went to my primary care doctor and she kind of looked at me as if I was stupid or I didn’t know what I was talking about. And she laughed a bit and said to me, 'Does your boyfriend know what he's doing?'
Abby: When sex hurt, I assumed it was just because it was the first time.
Sharon: Why is the system defining me as a problematic vagina.
Dee: It makes you feel like less of a woman in some ways. Like people have sex. And my body won't let it happen.
Noa: A couple of years ago, I was visiting New York and met up with a friend of mine from college -- Leila. We hadn’t seen each other in a while and we went out for late-night pizza. And immediately started catching up.
We’d always been really open with each other. And I wanted to tell her what was going on in my life -- but there was this one thing I just couldn’t say. I didn’t have the words. We were falling asleep, when she was like -- you have this serious boyfriend now, right? So you’ve finally had sex? I lied and said - yeah of course.
The truth is, I’m 27 years old and I’ve never had penetrative sex. I’ve tried multiple times and I would always feel this intense stinging and searing pain. Kind of like if you were doing the splits and someone was pushing you into a much deeper stretch than feels possible for your body. It always felt like my partner was hitting a wall, like there was literally nowhere to go inside of me.
Until recently, I kept it hidden from almost everyone around me. And that’s the question I want to talk about today, what drives this kind of secrecy. This culture where I, and the millions of women like me, feel like we can’t talk about our own bodies, our own health. There are other kinds of pain, or conditions, that people talk about all the time -- so when and how did I learn that this is something I had to keep secret?
I’m Noa.
Hannah: And I’m Hannah. Welcome to the first episode of our new podcast Tight Lipped, a public conversation about a very private type of pain.
We created this show to open up the conversation about chronic vulvar pain -- which is an umbrella term for different kinds of pain in the vagina or vulva, some which are caused by penetration.
This is an issue that impacts an estimated 28% of American women. And today, we’ll be talking about why anyone with a vagina might feel the need to stay quiet. We’ll start our show with one of own stories, how Noa went from lying to her friend Leila about sex, to hosting an entire podcast about it.
[Sounds of a skype call]
Noa: I’ve thought about this conversation with Leila a lot over the past couple of years. I wasn’t even sure if she remembered that night.
Leila: Okay so now that we have all of our equipment on, let’s have an emotional conversation!
Noa: Hi Leila.
Leila: Hi. Okay so tell me about this conversation, like describe it because I’m not sure if I remember it the same way as you.
Noa: I filled her in on everything I remembered.
Noa: You said something to me like, okay so like finally you had sex with him, right? And then I was like yeah yeah okay let’s move on.
Leila: So I do remember that night, also that sounds very on-brand of me to just like directly ask a very personal question. So I guess I was maybe a little curious at the time, like did it have like symbolic significance to you, like was it like a religious reason, were you just not comfortable.
Noa: At that time, trying to have penetrative sex had become like this weird science project. I thought it would work eventually -- if we did it right, it would stop hurting. I thought that sex was supposed to be the most natural thing in the world -- something people did all the time. Except for me. I wish I’d know at the time how to say, you know, sex isn’t only penetrative sex.
Leila: I don’t know, do you feel like you just weren’t ready to tell me about it? It felt like too large to go through?
Noa: Well it took me a really long time to get out of denial about what was happening. I first of all didn’t think there was literally a condition that exists that can cause you not to be able to have sex. I think I couldn’t say that to myself or to other people. Like it sounds silly, it doesn’t work.
Leila: I feel sad that you felt like you had to hide it. I also think I understand it. You know, you don’t have to reveal anything to everyone.
Noa: But I think that’s part of why this moment stands out to me. Is like I don’t have any association of hiding things from you. There was something that was so deep going on inside for me that still wasn’t something I could really face.
I liked what Leila said -- that I had the right not to disclose parts of my life that I didn’t want to. But keeping this secret wasn’t so much a choice -- it felt necessary. How could I tell people that the sex caused me excruciating pain? It felt like such a basic thing I should be able to do.
Noa: It wasn’t until a few months later -- in June 2017 -- when I was standing in the kitchen with my roommate Hannah -- who happens to be my co-host on this show.
Hannah: Hi.
Noa: That I learned that I may not be the only one.
Hannah: I was stirring the lentils and talking about my friend, Dee, who had a really weird problem. Dee, had never been able to use a tampon or have penetrative sex -- she has a condition called vaginismus. She had just gotten married and I wondered if she’d been able to treat it. And the next thing I knew your face was beet red and you were walking out of the room.
Noa: Like with Leila, I still hadn’t told Hannah that I’d never had penetrative sex. And when she started telling me about Dee, I recognized all of my own symptoms -- and was immediately overwhelmed with questions. Who was Dee? Were there other people out there secretly not having penetrative sex? Was this a medical condition? What is that word, “vaginismus”? I started panicking. I didn’t know there might be an actual name for 3
what I was experiencing. My breathing became quicker and quicker. And it felt like somehow my rib cage was too tight and too small.
Hannah: You left the room, and I had no idea why, and you locked yourself in the bathroom.
Noa: I was trying to calm down. All of these moments in my life starting coming together...how I’d never been able to use a tampon, or get a gynecological exam.
I used to kind of horde tampons. I’d buy a package, knowing I wouldn’t be able to use them. But I was still hopeful. They’d sit on my shelf for months, even years. Sometimes, when I moved to a new dorm or apartment, I’d bring the boxes with me.
It took me until I was 25 -- when Hannah and I had that conversation in the kitchen about Dee -- to finally hear of someone like me.
Noa: I knew I had to talk to Dee.
Hannah: Even though I hadn’t talked to Dee in years, I reached out to her on Facebook and said, I think my roommate has what you have, and you’re the only one that can help. Luckily, she agreed to talk.
Noa: I dialed her number while I was standing on the street in Andersonville, our neighborhood in Chicago. And I spent the next two hours walking in circles -- comparing vaginas with a woman I'd never met.
Dee: I'm 28, I still haven't successfully had sex which is a terrifying thought, you know you see those movies that we laughed at in high school like the 40 Year Old Virgin and stuff and you're thinking oh my god, that's a really possibility, this could really happen to me.
Noa: That’s Dee. And talking to her made it real. She told me how she couldn’t have sex -- meaning, penetrative sex. Here was this person who had the same symptoms I did.
Dee: I think I always knew that there was something a little bit weird, like I never really used tampons I wasn't a super sexual person, I'd never had sex even as all of our friends were having it and everything.
Noa: I saw so much of myself in Dee’s story. She told me about having a panic attack at her first gynecological exam -- when she was 18 years old. I’ve never even been able to go through with an exam -- it’s always incredibly painful and I jerk away at the slightest touch. The pain was always too extreme for a doctor to be able to insert a finger, let alone a speculum.
Dee began telling me about what happened after her panic attack. She spoke to her therapist, who began listing a series of possible conditions. She never knew there were so many different things that could make her vagina hurt! Which, neither did I until recently.
Dee: Maybe you have vaginismus, vulvodynia, endometriosis that there are all
these different things that can contribute to this fear that it might not just be anxiety.
Noa: Eventually Dee was diagnosed with vaginismus -- which means that the muscles around the vagina entrance contract or spasm. Doctors aren’t quite sure why it happens. For some people, it’s a psychological condition, for others it’s muscle dysfunction -- or both. To be honest, I’m still pretty confused about the psychological vs. physical distinction.
Hearing her use the word “vaginismus” was a relief -- this was a medical condition that other people knew about. We talked for a while and I started to ask her what I most wanted to know -- how do you treat it?
Dee: I started initially with a therapist doing talk therapy and cognitive therapy and then started doing some EMDR, I've done hypnosis, I've done pelvic floor therapy, I've done biofeedback, I even flew across the country and had a procedure that was supposed to cure vaginismus physically.
Noa: Every treatment was trial and error. She’d spent ten years and so much money on it. It sounded like there was no hope.
Dee: When I first found out about the vaginismus I more thought of it as I'm never gonna get married, I'm never gonna have a relationship because I've always been taught or always thought that sex was such an integral part of a relationship, you know it's that two people becoming one and being as close as you can and I just thought I'm never gonna have that.
Dee: It sounds so horrible but I've even told my husband. I want this for us, I want this for our relationship, but at the same time I feel like if someone said you don't have to ever have sex it's fine, I'd be like okay! Cool because this is the monkey on my back, like this is what eats me up inside.
Noa: After Dee and I finished talked, I walked up to our attic and sat with my head on the desk. I remember her saying at the end, hey if you find a magical solution be sure to let me know.
I’d been so ready to hear her tell me everything was gonna be alright...but that didn’t happen. I felt like I saw the next ten years ahead of me -- my whole life would be taken over by doctor’s appointments, medications, and endless trial and error...and maybe nothing would work.
I didn’t know this thing I had was permanent. That it could impact all my relationships, pregnancy, birth, my mental health...even my identity.
At that point, I knew three things. One, I wasn't alone. There were other women with similar problems. Two, this wasn't going to be easy. I wasn't going through phase and there was no magic pill. And three, the only way I would would make any progress would be by being honest about it. No more secrets. And so I started telling people.
Noa: I had this word now, “vaginismus.” Even if that wasn’t my diagnosis, I knew there were words to describe what was happening in my body. And that made it easier -- as I slowly started telling people -- they said all sorts of things in response:
Different voices: “Your boyfriend is so amazing for sticking around!”
“Are you still going to date men?”
“Is your boyfriend ok with it?”
“You need to focus on getting cured. That’s a terrible disease.”
Noa: Even a fifteen-year-old who I told said, Noa -- you’re probably just not relaxed enough!
These reactions made me uncomfortable. Why was my worth in my relationship so tied to my ability to have penetrative sex? People acted like I’m preventing my partner from doing what every man wants. Like, I’m guilty.
I had a conversation with Sharon Orshalemi about this. Sharon is a sexual health educator and runs an awareness group for women. Hearing her talk about the research, gave context for my own experience.
She told me about an article, called If Sex Hurts, Am I Still a Woman? Sharon explained:
Sharon: The chronic pain condition threatens your identity as a woman, as a sexual being, as a sexual partner and as a love partner, not just sexual partner. It's the core of your womanhood or your sexuality and if you can't provide that, then you're flawed and you fail.
Noa: To be clear, Sharon is really critical of this conventional thinking. But many women, including me, experience this -- feeling like a failure because they can’t have penetrative sex.
As supportive as people tried to be, they saw me now as broken, or needing to be fixed. Like Sharon says:
Sharon: And also the idea that this is a natural thing that is not natural for your body, like that's evolution, that's biology, that's nature and your body doesn't fulfill that.
Noa: This clearly contributes to the shame that I’ve felt. As Sharon says, it’s the coital imperative, which is the weight that penetration has in heterosexual sex.
Sharon: It defines heterosexuality, womanhood and heterosexual sex. there's actually no choice when you do heterosexual sex if you do intercourse or not because it's the definition of sex and it's the obvious.
Noa: Sharon says, there’s a strict script for how heterosexual sex looks and is defined. And it’s one of the reasons that so many people keep their pain to themselves.
People were concerned about my sex life and relationship. They made so many assumptions about how my partner feels. So I wanted to hear a little bit from him about how he experiences it. His name is Bar.
Noa: One night sitting on our bed Bar let me tape us talking. Bar’s not really a big talker.
Noa: Well this is scary recording this conversation....
Noa: So I was glad that he agreed to let me record him.
Noa: Can you tell me where we are right now.
Bar: In HaMadregot street in Jerusalem, Israel.
Noa: This is our home, right? We live together.
Bar: This is a rented apartment that we live in currently.
[Noa laughs] Once I got Bar to stop playing with the microphone -- we went back to what it was like -- two years ago. When we didn’t know what was wrong.
Noa: When did you know that I had this condition?
Bar: Well When we started going out we didn’t try to have sex for a while. After a few months we started trying and it just didn't work it was just too painful for you. And then you would cry.
Noa: What was that like for you?
Bar: Hard. I didn't know how to help. You can say.
Noa: I remember at the beginning I used to start crying and now I'm getting upset thinking about it. Sorry. [Crying] Okay I used to start crying and then you would say like like nothing's wrong, you're fine like you're okay, like you would kind of try to make it better. Do you remember that?
Bar: Mhm.
Noa: And then at a certain point you stopped saying that and instead you were like maybe you need to go to a doctor.
Noa: So, ever since I accepted the fact that the pain wasn’t gonna disappear on its own, I’ve thought about it every day. I wanted to know, does Bar think about it too?
Noa: How often do you think about this?
Bar: Not so much these days because it's like this is our reality now, right? We accepted the situation and this is like what we how we live. I hope that we can figure it out one day but not worried about that so much today.
Noa: Are you saying you hope one day we can have penetrative sex?
Bar: Yeah.
Noa: What if we can't?
Bar: Mah, we already talked about it.
Noa: Sometimes other people see it as a bigger deal than Bar does himself.
So by this point, I’d started telling almost everyone I knew about how sex was painful -- it was no longer something just between me and Bar. It felt good to tell people -- to no longer be alone in figuring this out.
Hannah: And, in the course of making this podcast, I think we’ve found that you’re far from the only one. There was this other reaction you kept getting when you told people -- that was pretty amazing, and it’s part of why we started this podcast.
Noa: When I told female friends and co-workers what was going on they would often respond with: “me too “ or “my best friend has that.” So many women I knew had chronic pain with penetration, or chronic vulvar pain.
Sharon had the same experience.
Sharon: And then I started hearing that like tons of people have it. Or, not the diagnosis, but have vaginal pain during intercourse. And no one talks about it. Like I saw it all around me. Everyone around me has it. That's how I felt.
Noa: It turns out my former boss has it. My roommate from college. Even my childhood best friend has it, we‘d just never told each other.
Sarah: Hey this is Sarah, I’m 30 years old and I have vaginismus.
Rachel: My name is Rachel, I’m 26 years old and when I was 18 I started having a lot of pain during sex.
Abby: My name is Abby and I'm 27 years old. I experience pain upon penetration, and have since the first time I had sex, at age 23. My then boyfriend suggested I might have vaginismus.
Rachel: Hi my name is Rachel Alter, I’m 26 years old, and in 2014 I was diagnosed with hypertonic pelvic floor disorder, which means that my vaginal muscles are too tight.
Sarah: I first realized that something was wrong when I was 14 but I wasn’t diagnosed until I was 20 and I didn’t really start pursuing treatment until I was 28.
Rachel: I would go to my college student health center, they’d run a couple of tests. I tried my gynecologist who works at a fancy hospital, she didn’t know what to do either.
Abby: My mom saw a note about it on my gynecological report and casually commented that she, too, had experienced that in the beginning, but that drinking wine had helped her to relax.
Rachel: So lactic acid builds up and I basically get a runner’s cramp inside my vagina which most of the time I don’t notice unless I’m penetrated by a penis.
Noa: These are just some of the people I know who started telling me their stories, once I opened up. And that continues to be true - at least once a week someone tells me that they or their friend has a chronic vulvar pain condition.
Noa: There were actually a couple of weeks where I literally thought: do I just happen to live in some strange alternative universe where all the women around me have pain with penetration? But then I actually I started doing research. And I found out, it’s not a coincidence. Up to 28% of women have chronic pain with penetration (meaning for at least three months), and that’s according to the Journal of Sexual Medicine. So, it’s pretty common.
Hannah: That’s at least 1 in 4 women. And that number is probably a low estimate since many are told to just go home and relax. We’ve even heard stories of women who are told by medical professionals and their friends to drink a glass of red wine and the pain will go away. So it makes sense that a lot of women don’t report what’s going on -- they think their pain is normal.
Noa: I bet that would be different if this were a primarily male problem, and Sharon thinks so too. She told us a story about a doctor she knows who was participating in a training on vulvar pain.
Sharon: And a male gynecologist told her like what's the big deal, a little pain. And she told him, I want you to imagine the next thing. Everytime you ejaculate it’s so painful you can't move and you start crying, how does that sound to you? And then he was like okay, okay, okay now I get it.
Noa: If men had this issue we’d never let it go unnoticed. And that’s why I’m talking about this here -- on this podcast. And it’s why nothing’s a secret for me anymore. So let’s talk about what we’re going to do on this show.
Hannah: We’re telling secrets...that shouldn’t be secret. Millions of women and people with vaginas have regular or chronic pain. But no one is talking about it. We want to understand why there’s such stigma and silence around these conditions. It’s not just Noa and Dee, these stories are part of something much much bigger.
Noa: We’re going to dive into: doctor stories, how conditions like this impact gender and sexual identities, relationships, patient advocacy, and so much more. We’ll bring in the voices of queer, trans, and non-binary people, and people of all sorts of backgrounds who experience chronic pain. And while I’ll tell my personal story throughout the season, it’s really just a jumping off point for us ask hard questions about the broader, more systemic issues.
Hannah: On our next episode, we’ll talk about the history of treating women’s pain and the role of doctors and the medical establishment, here’s a sneak peek:
Paula Kamen: There’s so much gender bias in automatically categorizing something that a woman has as hysteria, and just a huge lack of research on women because they’re not taken seriously.
Maya Dusenbery: The fact that so many patients have to turn to each other to get knowledge about how to manage their conditions sort of reflects the failures of the medical system, right. I think it’s less than ideal that women kind of become each other’s own doctors.
Noa: We want to hear your stories. We want to show that Vaginismus, Vulvodynia, Provoked Vestibulodynia, Endometriosis and other chronic conditions affect people of all ages and backgrounds. So if you, or someone you know, has a story that you’re willing to share, email us at tightlippedpod@gmail.com.
Thanks for listening to our first episode and we’ll be back soon with the next one!
Hannah: Don’t forget to leave us a review on iTunes and to share Tight Lipped with your friends!
Credits
This episode was edited by Judah Kauffman. Special thank you to Gaby Escovar for creating our logo and Marty Kezon for website design. A huge thank you to everyone who listened, gave feedback on our drafts and directed us to resources -- Inbar Amir, Daniela Tolchinsky, Adina Brin, Catie Stewart, Sharon Orshalemi, Phyllis Mate, Laura Garbes, Ellen Mayer, Mishy Harman and the Dorot Fellows -- we couldn’t have launched this without you. We also want to thank everyone who helped and supported us in the past year: Bar Blas, Peter Fogel, Rachel Cohen, Rachel Alter, Sarah Turbow, Leila Goldstein, Anna Rubin, Elli Krandel, Abby Klionsky, Zev Levi, Yochai Maital, Justin Williams, Ben Wallick, Amy Tardif, and current and past members of our co-op Doykeit.
Thank you all so much.