Episode 9: Holding It In

On a typical weekday night, you can find Gabriela twerking to Bad Bunny. She loves to dance, but there’s another reason she’s out on the dance floor: to release her pelvic floor. Gabriela’s living her best life these days. Yet, not that long ago, things looked pretty bleak. She felt held back by painful urinary symptoms she didn’t understand, and stuck in a relationship with a man who wasn’t the partner she needed. 

In today’s episode, we hear how Gabriela’s experience with chronic pelvic pain transformed her relationship to sex, dating, and (most importantly) herself.

Gabriela’s Playlist and DJ Collective:

Resources:

Credits:

Writer: Olivia Goode
Editor: Ava Ahmadbeigi 
Executive Producer: Hannah Barg
Associate Producers: Sararosa Davies and Delilah Righter
Production Assistant: Kalaisha Totty
Art: By Sami Aryel


Transcript

Sponsorship Promo:

[Enter Music - Tiny Putty]

This season is made possible by our generous sponsors: The Vagina Collective, The National Vulvodynia Association, and Ohnut. The Vagina Collective funds people and organizations changing how society talks about vulvovaginal pain. The National Vulvodynia Association, a patient advocacy nonprofit committed to funding research that will lead to more effective treatments for vulvodynia. And Ohnut: For when sex feels too deep (eep!), Ohnut is the partner-approved, doctor-recommended solution for more comfortable sex.

[Exit Music]

Episode:

[Enter Music - Siento El Boom]

Gabriela: It's totally just like a bunch of reggaeton, so like Bad Bunny, and some like old school reggaeton…

Noa: This is Gabriela. 

Gabriela: ..and I have like Pitbull…back that ass up is definitely on there.

[Change Music - switch to chorus of “Back That Azz Up”, then cuts out]

[Exit Music on fade - “twerk perreo playlist”]

Gabriela: These are songs where you can thrust your pelvic area. It's called my twerk perreo playlist, and I'm always like excited to play it because I'm like, I just want people to release that area as much as possible, because I feel like we're all really tight. [laughs]

Noa: By day, Gabriela is a professor in southern California. But by night? She’s DJ.

[Enter Music - Gaby’s playlist, let her intro play before Noa comes back in]

And that playlist she’s talking about? She created it for a specific reason. Because like so many of us out there, she has chronic pelvic pain. 

[Exit Music - fades out]

Gabriela: The conditions that I have is primarily interstitial cystitis, which is also known as painful bladder syndrome. I also have a form of pelvic floor dysfunction, IBS and gastroparesis all mixed up in there.

[Enter Music - “Gemeni City” after “movement that helped her”]

Noa: These days, Gabriela’s doing great. She’s out on the dance floor, sharing the music and movement that helped her. But not that long ago, her life looked pretty different. It was like she was stuck in a corner, held back by painful symptoms she didn’t understand…and trapped in a relationship with a man who wasn’t the dance partner she needed. 

[Exit Music]

[Enter Music - Gambrel]

Noa/Tight Lipped Intro: This is Tight Lipped, a public conversation about a private type of pain. I'm Noa. Welcome to season two of our podcast, we have so many stories we’re excited to share with you. 

On our 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. 

We know that chronic vulvovaginal and pelvic pain can have a huge impact on someone’s dating life, sexual identity, and intimate relationships. And that’s part of why we wanted to share Gabriela’s story…because her pelvic pain changed how she understood her own body and her relationships. 

[Music Exits - on a post]

ACT I

Noa: Back in 2014, Gabriela started feeling like she needed to pee all the time.Like her bladder was going to explode.

[Enter music - Greyleaf Willow - enters at “bathroom”]

Gabriela: And it was constant. And even though I would go to the bathroom, the sensation or the urgency never dissipated. And when I talk about like urgency, it's like fire, like your bladder is literally on fire 24/7.

Noa: Many people with vulvovaginal and pelvic pain experience these urinary symptoms – the urgency and the pain.

And for Gabriela, it was so bad that she went to the emergency room twice. But the doctors just assumed she had a UTI, even when her urine culture came back negative.

Gabriela: I remember saying like, this does not feel like any UTI I've ever had. And they just said, well, here have some antibiotics and you should be fine.

Noa: But the antibiotics didn’t help. The pain and urgency didn’t go away. And it was hard for Gabriela to focus on anything else.

[Exit music - end on post]

At the time, she was working with high school students. It was a demanding job. And she remembers spending so much time and energy rearranging things like parent-teacher conferences around her bladder issues.

Gabriela: I decided to put like a 10 minute break in between every single parent meeting so that I could go to the bathroom.

Noa: She wanted to take more time off work, to rest and take care of herself. But, that didn’t seem like an option. Gabriela feels like some of that pressure came from her job. But looking back, she realizes it was also an attitude she’d internalized growing up.

[Enter Music - Sudden Courier - starts immediately]

Gabriela: I think that I come from a line of women, of mujeres, that push through it. Or that part of our pride is that we have a high pain tolerance and, or we never get sick. 

Noa: Still, there was a limit to how much even Gabriela could push through. So over the next few years, she saw specialist after specialist, and got test after test. But just like at the emergency room, she felt like most doctors weren’t really listening to her. They’d say things like, ‘it’s probably just stress!’ Or, ‘maybe try the keto diet, and see if that helps!’ They didn’t seem that invested in figuring out what was actually wrong. 

[Exit Music - listening to her]
[Enter music - Latecomer - at “during this time”]

During this time, Gabriela kept a journal:

Gabriela:  The doctors keep telling me it's just stress and I should relax. Like, it's that easy. How is that helpful? I'm still in pain.

It's been just about eight months and to be honest, I've been really down this week. Very negative. I can't help but think this is my life now. And it really scares me. 

I've had really bad flare ups in the last two weeks. I just wanna give up. This encompasses my entire life. Every movement, every thought. A part of me just wants to die. What's the point of life if I'm constantly suffering? And I have to constantly put on a show for everyone else, just so they don't feel bad or uncomfortable.

[Exit music: Latecomer]

Noa: For a while, the one person Gabriela wasn’t “putting on a show” for was her husband. She felt grateful to have a partner at home, someone who saw what she was going through. 

Gabriela: And I felt like I, I was lucky that I had someone that was somewhat supportive.

[Enter Music - The Killjoy Brothers, just the beat]

Noa: But pretty quickly, somewhat supportive turned into…not so supportive. Her husband was frustrated that she wasn’t getting better. And sometimes, it seemed like he was questioning if her symptoms were that big of a deal.

Gabriela: It would be like, why, like, why are you still in pain? Like, why aren't you over this? I remember him calling me a hypochondriac and like, you're getting all this treatment. Like, why don't you feel better? Like, why are you so sensitive? That kind of thing.

[Exit Music]

Noa: Other things in their relationship changed, too.

Gabriela: I mean, sex completely went out the window. I was in so much pain that the last thing I wanted to do was like have penetrative sex with my partner.

Noa: They’d always  been a pretty social couple. And Gabriela wanted to keep going out, to keep living her normal life. But often, on nights when they had plans? At the last minute, her symptoms would flare up. And she’d say, you know what, I can’t go out

Gabriela: And then feeling guilty, but mostly because he made me feel guilty about not, not wanting to go out.

[Enter Music - Fissure Forming - wait a beat]

Noa: She started feeling alone in her marriage…and alone in general. 

Gabriela: I didn't really share with my friends what I was experiencing medically. There was a lot of shame around it, or I just was exhausted of explaining myself to my partner and my doctors, but the last thing I wanted to do was share it with my friends, and kind of dampen the mood or whatever.

Noa: And meanwhile, her relationship continued to unravel. 

Finally, things hit rock bottom. Gabriela discovered that her husband was cheating on her…and had been cheating on her for quite some time.

[Exit Music]

Gabriela: And so his, his argument basically for cheating on me was because, oh, he wasn't getting the sex that he needed and that's why he sought it elsewhere. And so I think that that also made me feel like, oh, it's my fault. 

[Enter Music - KeoKeo]

Noa: Gabriela was devastated. In 2016, she and her husband split up for good. 

We’ve heard from a lot of people with vulvovaginal pain that this is pretty much their worst nightmare. They’re terrified that their pain…and everything that comes along with it…might erode or destroy a relationship. 

As part of our research, we spoke with a Virginia Tech professor named Christine Labuski [Kris-teen La-bus-kee], who wrote a book about the experiences of women with vulvar pain. And she told us that many of the women she interviewed shared these fears. Some of them had partners who were like Gabriela’s husband. They just wanted their wives or girlfriends to be fixed. And they didn’t understand why treatment wasn’t making things magically better. 

[Exit Music] 

For Gabriela, after her husband cheated and blamed her, she wondered, was this just how things were going to be now?  

Gabriela: Honestly, when, when the divorce happened, I felt broken in that, in addition to being heartbroken, I felt that having my chronic condition made me somehow less desirable. Part of me felt like I'm never going to find anyone who would accept me fully. I was single. And at the time I was like, I'm 32, that's old. Now I have to start all over again, meeting someone and then when, by the time that happens, maybe I can't have a family and so on.    

Noa: To make matters even worse, when she got divorced, Gabriela lost the health insurance she’d had through her ex-husband. She’d just started a PhD program, so her only real option was to go on her state’s version of Medicaid. Which gave her way fewer options than her old plan. But at the same time, the thought of continuing to see doctor after doctor was exhausting.

Gabriela: After my divorce, I said, you know what, I cannot handle like this heartbreak and simultaneously like going to the doctor multiple times a week and not feeling any relief.

Noa: Things looked pretty bleak. But luckily that was all about to change with a little help from a friend named Melissa. 

ACT II

Melissa: It must have been right before her birthday I think it happened, because it was around November…  

Noa: That’s Melissa.

[Enter Music - Jumbel]

Melissa: I just got a phone call. I think I was out and about, and she said, Hey, um, //are you available? I need a place to stay at because I can't be at the house. And I said, yes, whatever you need.

Noa: When Gabriela’s marriage imploded, and she needed a place to stay, she turned to. They were in the same PhD program, but they’d only known each other for about three months. At first, Melissa was just trying to be there for a new friend in need.

Melissa: I've had a lot of friends that have gone through a lot of shitty relationships. So I was like, here are the keys, do whatever you need to do. And we'll talk later. She was like, I'll pay you. And I was like, let's not even worry about that right now.

[Exit Music - here are the keys]

Noa: Gabriela and Melissa had already bonded in class, when a professor said something offensive about people who are undocumented, and Melissa spoke up.

Melissa: And I was like, somebody else needs to say something in this class because I can't be the only one. And Gabby was the first one, and I was like, oh my God, thank God. And so I felt like it was a little tag team and that's, I think that's where our friendship started really like developing.

Noa: During the first few months of their friendship, when Gabriela was still living with her husband, Melissa kept trying to get Gabriela to come out dancing with her.  

Melissa: One of those weekends, she's like, oh, me and my husband can come along. So they both came out and, um, I remember, I remember looking at her like she wanted to dance, but she wasn't dancing that much yet. And I was like, why is she holding it in?

When I first met her, she was more quiet. Um, I want to say she was still like inside her little shell.

Noa: After the divorce, Melissa tried again. 

[Enter Music - Reggaeton Pop Instrumental]

Melissa: Every weekend, I was at the clubs, I was out and I would invite whoever wanted to come. I said, you can drink. You don't, you don't have to drink. I'm not going to pressure you. I'm going to go dancing. And you're welcome to come and join me. And so when Gabby moved in, that's when she was like, oh, you go out every weekend. Yes, I dance every weekend. Would you like to come?

Noa: Gabriela kept saying no. She was heartbroken and in pain. Dancing felt like the last thing she wanted to do. 

Gabriela: She was like, no, come on, let's get out of the house.

Noa: And finally, Gabriela said yes. She remembers getting ready that night.

Gabriela: I hadn't dressed up in so long and I forgot how much I enjoy dressing up and just being very hyper femme. But I remember not really having that many options to wear, like, I didn't even have like club clothes, and so I had to get creative in terms of what I found in my closet.

[Exit Music - ends on fade at “I forgot how much”]

Noa: They went to a club called Onyx (AH-nyx)

[Enter Music - Kid Kodi]

Gabriela: The reggaeton room is in the basement. So you walk down this like long flight of steps. And so already, when you're walking down, you can hear like the base, like, boom, boom, but you can't really recognize what song is playing. 

Noa: From the moment they arrived, Gabriela loved it.

Gabriela: And, um, just walking into the club and honestly just feeling the base like resonate in your body to me is one of my favorite feelings. And I associate it with kind of my return, my return back to, to dancing and, and going out.

[Exit music - fades out and finishes at “Gabriela’s life”]

Noa: It really was a return…because when she was younger, dancing had been a huge part of Gabriela’s life. She’d trained in classical ballet from the time she was little until she was 18. And growing up in Mexico, going out dancing was just part of the culture.

Gabriela: The first time I went to nightclub was like 14, because that's just what you do in Acapulco. And, and we were, so we were so cute and so sweet that we're like, we're not going to drink. And we didn't do any of these things, we went purely to go dance.

Noa: But gradually, as Gabriela got older and busier, dance fell out of her life. Especially once she got married. Her husband never wanted to go out dancing.

Gabriela: Which now I'm like, oh, total red flag [laughs].

 Noa: Now, she was back out on the dance floor, and it felt like a revelation.

[Enter Music - Cumaribo]

Gabriela: I forgot about how much fun I had, like within the act of dance. Not necessarily in like the gross sweaty club environment, but the act of dancing with friends and moving your body. There was something really beautiful about that that made me feel happy again.

I used to love doing this. And it was kind of like I had forgotten, and I, there was parts of myself that I was returning to, and I didn't know I had lost.

Noa: She also found that dancing seemed to ease her pain and other symptoms.

Gabriela: Maybe the last thing I wanted to do was move my body. But if I did, I would find relief. Which is like the most annoying thing. I mean, it's like, all you want to do is just like lay down in a fetal position with your heat pad. But sometimes if you do move your body, the pain lessens.

[Exit Music on post, play a few beats]

Noa: Instead of her body controlling her, and controlling her life, dance made her feel like she had agency over her body. Especially dance that involved moving her hips and her pelvis. She took this amazing workshop…

[Enter Music - Skyforager - “she took this”]

Gabriela: …on reggaeton and perreo, so perreo as in like twerking, right? And the relationship between the pelvic region and twerking and this aspect of liberation..
And the way that we are kind of trained, especially if we're assigned as women to, to carry our bodies in that way, where we hide this area of our body, and how it is also correlates with a lot of issues in that area of the body and, and a lot of shame around that area of the body.

And twerking or perreo allows for the opportunity to release.

[Exit Music - plays for a beat]

Noa:  Melissa remembers watching all this happen.

Melissa: After we started going out she started venturing out. I know she joined a little group of reggaeton dancers. Oh, and then later on she joined another dance group of folklórico. Oh and then she also started doing Bomba. And so, so I was like, yeah, I'll go w ith you. I'll join you. I'll go watch you. And so it just started like exploding. It was like this very positive dance explosion that I was all there for.

ACT III

Noa: So, what was going on with Gabriela medically during all of this? Here’s Melissa.

Melissa: I remember her going to the doctor and I remember her telling me, oh, I have another doctor's appointment. Um, and then I remember her telling me I have a flare up.

I was like, what, what do you mean when you, when you have a flare up, what does that mean? And what do you feel and what is, what does that look like for you? So then she would start explaining to me. She's like, yeah, so I have these things that happen //but I don't, I don't know what I have yet.

Noa: Remember how Gabriela lost the good health insurance she’d had through her ex? Eventually, after talking with family and friends, she realized she had another option. She was in San Diego, and Tijuana is just over the border. She could try seeing some specialists in Mexico instead.

[Enter Music - Greycase, play for a beat before she comes in]

Gabriela: And my experience was like night and day. Honestly, I was really blown away by the amount of care I received.

Noa: In Mexico, she didn’t have to wait for an insurance company to approve or deny care. Everything was way cheaper, so she could just pay directly, in dollars.  

Gradually, Gabriela started getting actual diagnoses. She found things that helped manage her symptoms – like pelvic floor physical therapy, certain medications, and avoiding trigger foods. Her chronic condition began to feel like something she could handle.

She was focusing on healing her body. But in the aftermath of her divorce, she decided to focus on healing emotionally too. 

Gabriela: In those moments of just hanging out with my friends and laughing and having a good time, I think that that was a turning point in understanding that there was joy outside of my immediate heartbreak. 

[Exit Music at “feeing pain”]

And I could still find joy, even if I was feeling pain. I think that, that, I think I used to see them as separate, right. So if I'm in pain, there's no possible way that I could also experience joy simultaneously. And now I have stories of when, well, maybe I shouldn't have, but I go out with a flare. I said, you know what? One of my sayings was like, if I'm going to be in pain, I might as well be having a good time [laughs].

 Noa: Instead of trying to hide her chronic illness from her friends, she started being honest.

[Enter Music - Come As You Are, play for a beat or two]

Gabriela: And I think I stopped seeing myself as broken because I had this other beautiful community that didn't see me that way. That saw me as full person, and also recognized my  chronic illness. And it was something that made me feel validated.

I think that part of my healing journey with interstitial cystitis has been also just focusing on me. As someone who was always like a serial dater, someone who's like, who was always, always in relationships. And so really my divorce at age 32 was the first time I was like actually single.

Noa: She had to think about what she really wanted, without anyone else in the picture. 

[Exit Music on post “learning experience”]

Gabrielle: But I think that jumping into dating relatively soon after my divorce, was also this like learning experience. And I realized that yes, I was definitely placing a lot of my validation in, in a man, right. But I had to go out and date to begin to unpack that.

Noa: Through the process of getting back out there and dating, Gabriela learned a lot.

Gabriela: I started approaching dating from a very different perspective, um, and I just said, you know what, I'm just going to go out and make friends and then see what happens.

Noa: Even if a flare meant that she couldn’t have penis-in-vagina sex, Gabriela realized that didn’t have to be this terrible deal-breaker. In fact, it could even be…kind of amazing.

[Enter Music - Di Breun]

Gabriela: There was also like this development of like pleasure and realizing also that penetrative sex, isn't like the only form of sex that I should be having. And a lot of it happened through, like, masturbation, and then obviously dating and realizing, oh, I'm not the problem here.

Noa: Gabriela started asking herself…did she even like that type of sex? Why was penetrative sex the goal?

Gabriela: It didn't feel pleasurable even from like, when I lost my virginity at 18, I was like, oh, this is it? Like it kind of hurts. And I don't really like penetration specifically. I was like, hmm, I'd rather do other things, but I kind of, I mean, I went along with it because these are conversations that you don't necessarily have, or I didn't have at the time. And so, when I got married, I kind of just accepted that sex in many ways is something that's done to me as a woman. But I'm not necessarily an active participant. It was just kind of like something I had to do.

[Exit Music on a post, wait a beat or two]

Gabriela: It's funny that I didn't have like great sex until after I got divorced, when I was in my thirties. And to think that I went for such a long period of time, like just thinking, oh, maybe I'm just not a sexual person.

Noa: She was figuring out what she actually enjoyed. And a whole new world opened up to her.

The professor we talked about earlier, Christine Labuski [La-bus-kee], told us that she’s seen lots of women go through some version of this. That when pelvic pain makes it difficult or impossible to have penetrative sex…it can actually lead to a really positive re-examination of what sex and intimacy is.

[Enter Music - Milkwood ]

For example, Professor Labuski [La-bus-kee] told us about a woman who was much older than Gabriela when she started experiencing pain. Initially, her treatment goal was to be able to go back to having regular penetrative sex with her husband. But gradually, like Gabriela, she started thinking about how that sex had always been all about her husband’s pleasure, not hers. And she decided to renegotiate what sex looks like in her marriage.

Gabriela started looking at her marriage in a new light, too. She realized - things hadn’t been right, even before her symptoms started. 

Gabriela: So it wasn't until afterwards that I started piecing together and I'm like, oh, that was gaslighting, or like, oh, that wasn't actually supportive.

Noa: Now, she was like, wow, I was expecting way too little from him. Which was weird, because outwardly, she’d always been such a staunch feminist. But at home, in her relationship? It was a different story.

[Exit music on post, wait a beat]

Gabriela: Like I was such a good daughter of the patriarchy. It makes me want to barf [laughs].

Noa: Ultimately, it took the onset of her condition and the breakup of her marriage to get Gabriela to a happier, healthier place. 

I want to be really clear that we’re not trying to romanticize Gabriela’s chronic pain, or anyone else’s. And everything isn’t magically better for Gabriela, either. She’s not cured. Often, despite her best efforts, her symptoms still flare up. That’s something she’s still working on managing and accepting.

[Enter Music - Ottol]

Gabriela: Cause even though I know that this is a chronic condition and there's no cure, there's always a part of me that's like, oh, I want to, I want to be cured. And, and kind of coming to terms with, well maybe there isn't a cure, but there are ways to, to manage it and have more low pain days than high pain days and, and be okay with that and not be so angry or resentful.

Noa: One thing that helps Gabriela…is sharing her love of dance with other people. 

[Change Music - goes right into DJ set, wait a beat]

Gabriela: Enjoying dance and moving our bodies and liberation with friends has been transformational for me…so much so that I'm a DJ now. [laughs]

Noa: She especially loves cuing up that twerking playlist you heard about at the beginning of the episode. And when Gabriela DJs, Melissa always shows up. She likes to dance right in front, where Gabriela can see her.

Melissa: I feel like it's like, oh, that's my friend. Look at her blossom. 

I'm very proud of how she's handled her situation from, from her ex-partner, to the divorce, to learning how to cope with her condition, to dancing, to finishing her PhD through all this crap that she's been through.  I'm very happy where she's at today and that there's more to come. So there's more DJ Niayuku coming your way. And I'm just like, I'm here for it. Let's go. Let's do this.

[Exit Music - how to cope with her condition] 
[Enter Music -  On Top of It - at “let’s do this”]

Noa: Dealing with chronic pelvic pain transformed Gabriela’s relationships – to her friends, her partners, and, ultimately, herself.

A while back, Gabriela started dating a new guy. When she told him about her interstitial cystitis, he immediately looked it up. It was a small thing, but it seemed like a good sign – like here was someone who was willing to educate himself, who was curious.

They’ve been together for over three years now, and things are great with him. Gabriela says it’s the healthiest relationship she’s ever been in. And she’s not stressing about whether they’ll get married, or whether she’ll have kids. 

Gabriela: I'm still kind of in that place where I'm like, well, if, if it happens, it happens. If it doesn't it's okay. Because I think that ultimately the most important relationship is the one I have with myself.   

[Exit Music on post]

Noa: When I scroll through the facebook groups and reddit threads about vulvovaginal pain, I often see questions and stories about this. Women and people who are trying to navigate the messiness of their relationships. Or seeking advice when they realize that the model they learned for sex doesn’t work for them. These posts can be heart wrenching, painful, and, sometimes, too upsetting to read.

And yet, below each of these stories, there are hundreds of comments from fellow online community members. These community members rally around those who are struggling, reminding them that it’s not their fault. They try to paint a different picture – of what’s possible when we let ourselves reimagine our most intimate relationships.

I hope that Gabriela’s story can serve as that reminder for all of us. And if you ever need some inspiration, just turn on Gabriela’s pelvic playlist…[MUSIC].

[Enter Siento El Boom]

[Enter Music - Home Home At Last]

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. 

This episode was written by Olivia Goode [Olivia Good] 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]

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. 

[Exit Music on a post]

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Episode 10: The DSM

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Episode 8: Power in Numbers