Vulvodynia is a catchall term, used to describe any form of pain in a person’s vulva that persists for at least three months with no clear cause. While it is not a well-known condition, even among medical professionals, it’s not particularly rare: Experts estimate that about 15 percent of all people with vulvas will experience vulvodynia. At any given moment, around 1 in 20 people with vulvas are likely living with active symptoms.
The pain may feel like a burn, itch, ache, throb, stab, swell, or overarching rawness—but aside from possibly a little inflammation, it almost never manifests any visible symptoms. The pain may be constant, or it may only flare up in response to triggers, like pressure; it may be generalized, or it may only affect one part of the vulva. In any case, the effects can be disruptive. Vulvodynia can make it hard for people to exercise, sit for long periods, use tampons, undergo gynecological exams, or even wear underwear or tight-fitting pants without suffering. Perhaps unsurprisingly, most people with the condition say it takes a huge toll on their sex lives.
For the majority of people with vulvodynia, the pressure associated with sexual contact, and especially with penetrative sex, is often too painful to endure. Anticipation of this pain, conscious or not, can cause vaginismus, intense vaginal muscle contractions that make penetration even less pleasant. Vulvodynia does not interfere directly with a person’s ability to feel sexual desire, or to get aroused, and many people with the condition can still in theory find pleasure in external genital stimulation that avoids any trigger spots or intense pressure. But repeated painful sexual experiences, ensuing anxiety and depression, and an all-too-common lack of understanding from partners can lead many people with vulvodynia to withdraw from sex or avoid it altogether.
No one knows what causes vulvodynia—in fact, there may not be one single cause, nor is there any one accepted course of treatment. So, people with vulvodynia have to experiment with a laundry list of lifestyle changes, medications, and therapies to manage their symptoms. Rather than help them navigate this dizzying array of options, though, doctors often dismiss patients’ symptoms as being in their heads and tell them to simply relax. It often takes people with vulvodynia years of cycling through upwards of a dozen care providers before they find someone willing to take them seriously, or knowledgeable enough to help them. Even then, only about 17 percent eventually find a treatment that fully alleviates their pain. The vast majority have long had to to figure out how to navigate their way through pain and sex all on their own.
Over the last couple of decades, advocacy groups like the National Vulvodynia Association have brought greater awareness to the condition. They have created accessible materials to help people talk about vulvodynia with partners, map out where they experience pleasure versus pain during sex, and build up a repertoire of sex acts and positions that work with that map. People with vulvodynia have also started to share their experiences with the condition publicly, especially on podcasts like Tight Lipped, offering reference points to others who might feel alone. Yet it is still relatively hard to find couples speaking openly about their experiences working through vulvodynia together—and it’s exceptionally hard to find stories from people of color. (Medical literature long considered vulvodynia an almost exclusively white women’s issue, but recent studies show that is definitively untrue.)
To address this gap, and bring more light to a neglected topic, VICE spoke to Jazzmine, a Black woman in her 30s who’s lived with vulvodynia since childhood, and her longtime partner Jordan, about how they approach sex and intimacy alongside the condition.
This interview has been edited for length and clarity. At their request, Jazzmine and Jordan’s last names have been withheld to protect their privacy.
Jazzmine: I recall having symptoms as early as age 8 or 9. At the worst, it feels like sandpaper rubbing on my skin. I also have severe lower back pain and pain in my pelvic floor. I have scoliosis, too, so I’m always slouching and leaning, which exacerbates my pain and tension. Every now and then, I get spasms out of nowhere that feel like someone’s sticking a broom handle up my butthole, which last for like 30 minutes or an hour. The first time that happened, it was so bad I thought I needed to go to the emergency room—but then I thought I wouldn’t be able to explain what was happening to me, so they wouldn’t be able to help me anyway. So I suffer through them.
It can be hard to separate those different sources of pain. But overall, my pain is always just there. I’m attached to my heating pad all the time. And these days, the pain in my genital area is so bad that wearing underwear is not a thing for me anymore. I always have to go commando. Yeah, I’d say that, in my adult life, my pelvis just feels like it’s on fire constantly, from front to back.
I first really recognized something was wrong when I was 16, 17, when I went to a gynecologist for a pap smear because I wanted to get on hormonal birth control. She used the scope on me—it was the first time I’d ever been penetrated; I hadn’t even penetrated myself—and it was very painful. I actually compare the experience to assault, because the whole time she was laughing and joking about my reaction, like, “Oh, you’re going to have to have a lot of alcohol on your wedding night.” That felt especially bad, because I’d purposefully found a Black OB-GYN to address my nervousness around going to doctors. My mom was in the room with me, and she didn’t seem to have an issue with any of this, so I felt like I shouldn’t have one either. But that experience turned me off from ever wanting to be sexually intimate with people.
When I went to college and started exploring sexuality, I’d kiss people and we’d touch each other, but at a certain point I’d say, “OK, that’s it,” because in the back of my mind I’d just be thinking, this doesn’t work. I can’t have penetrative sex. Digital penetration is the most I can do, and even that is uncomfortable, even if I’m aroused and experiencing pleasure otherwise.
I got together with Jordan around 2013. He’s my first sexual partner. By that time, I worried I would never be able to fix this, and I took it on as a fault in me. I thought I felt pain during sex because I was afraid, even though I’m not a fearful person. I’d been molested around the same time my symptoms started, and I have PTSD. So—and this feels horrible to say, but—I was using that as an excuse for all the things that felt wrong in my body. That I was being triggered.
But we took jobs that sent us to different places soon after we met, so we started long-distance.
Jordan: We weren’t even in the same time zone.
Jazzmine: So, we learned to love each other, and to be intimate, without having physical sex. We sent sexual pictures, videos, and texts—even before Jordan said, “Can you be my girlfriend?”
Jordan: Yeah, it did start then, didn’t it? [Laughs.] Man, I’m a bad influence.
Jazzmine: Right? [Laughs.] You were definitely the instigator. I think we only started to become physically intimate about a year into the relationship, one of the times we met up in person.
Jordan: Yeah, and that early intimacy was mostly about physical touch.
Jazzmine: I was nervous because I didn’t know what intimacy looked like for me yet, and I wasn’t sure but I thought penetrative sex would be a challenge, so I avoided more than that. But Jordan really supported me and didn’t push for anything more than that early on.
Jordan: For me, because you were a virgin and we didn’t really know what was going on with the status of our relationship, I didn’t want to be the guy who pushed you into sex.
Jazzmine: It was easy at that point to be like, This isn’t a thing. We’re a happy fun couple and we like to explore sexuality and intimacy. I also held out hope that maybe before just wasn’t the right time for me to have penetrative sex. Maybe I didn’t trust my other partners enough. It’s silly, but I legitimately thought, maybe when we get married I’ll just relax and it’ll be OK, right?
Then, three years into our relationship, we moved in together. We were excited and wanted to be sexual bunnies, so we tried penetrative sex. But whenever we did, I’d start crying—before, during, and after the penetration. I started to feel very broken and to dissociate in the bedroom, mentally going somewhere else entirely. I started to feel like I didn’t want to be intimate at all.
Jordan: At the time, I thought it was all a psychological thing, not a physical thing at all, and that, in my physically loving Jazzmine, I was harming her—that it was all my fault.
Jazzmine: I’d told Jordan about my molestation before that, because it was the last year of the window when I could report it, so it was really prevalent in my mind.
Jordan: I was aware of different types of pain that women feel during sex, but I didn’t think any physical pain or condition could stop you from having any penetrative sex at all—or at least no pain you couldn’t go to a muscular therapist and just work through. That was maybe the athlete in me thinking about it. So, the conversations we had were mostly PTSD triggers, and how I could try to create a space where Jazzmine was more comfortable. But we also started to talk about what it would mean for our relationship if we just couldn’t have this type of sex.
Jazzmine: There was one weird moment where I was able to penetrate myself with three fingers without much pain that we held onto, like, can we figure out what made that work? But I tried everything that I could think of: Alcohol, numbing creams, painkillers. None of it was working. I didn’t know what else to say or do, because none of my doctors had ever been able to explain this to me, and I didn’t know how to explain it to anyone so that they’d understand. Everyone I told about this would always just say, “Oh, you’re just anxious,” and I really believed that. Also, I didn’t want to talk about my vagina—to say it feels broken—and get laughed at again.
I had thoughts like: I’m not a good partner. Will I ever be able to make children? Will anyone believe me if I talk about this? It was a hole in our relationship, this thing I wanted to do for Jordan but that I couldn’t do. I felt completely alien and wrong and like I was being punished. I felt broken. And if I couldn’t fix this then … Well, feelings of suicide came up for me.
My frustrations turned into anger. I come from a family where there was a lot of infidelity, so I started thinking, Is Jordan going to cheat? Is he already cheating? Is he going to ask me for a hall pass? I’d call my mom and be like, “It’s just not working. Should I break up with Jordan?”
But my love for Jordan is deeper than my experience of this. I can’t imagine not having him in my life. Even in the moments when I had the phone in my hand, ready to call and break up with him, I just couldn’t. Because this human came into my life and loved me in ways I was looking for, despite all of this. We’re not perfect, but the majority of our relationship outweighs this part.
Jordan: Starting out long-distance honestly helped prepare us for this, I think. That space allowed me to know that, as I came to love you, it wasn’t about our penetrative sexual relationship. After months of not seeing each other, when I was able to just sit next to you, it meant the world to me. And yes, there are a lot of traumas we’re both navigating in our lives. But there’s power in us doing that together. Like Jazzmine said, that just outweighs all of these problems, and others.
Jazzmine: While we were trying to figure this out, I went to a gynecologist to get a pap smear, expecting pain, discomfort, and crying. But the first thing she said, even before she used the speculum on me, was, “I think you have vaginismus.” She touched me and said, “I noticed you clamp up when I do that. Are you able to relax?” I said, “I don’t know how.” So, she sent me to a specialist, who gave a name to this and was able to walk me through the physiology of it.
There are so many things that could be causing or influencing this that all of the doctors and therapists I’m seeing don’t know what to fix first to address things. We’re currently focusing on addressing my other chronic pain issues, to see if that has any effect. I don’t have as much vulvar pain anymore, but my overall pelvic pain has gotten a lot worse over the last year or so. This condition is like a full-time job, because I’m constantly going to doctors appointments or physical therapy, and between those visits I’m doing some kind of stretching. And every stage of dealing with this has been different, so I never know what to expect next. There’s also this racial element, where almost all of my doctors and physical therapists are white women and it feels like they don’t know what to do with me—like they aren’t used to looking at a Black body.
But just having a name for this helps. It’s hard to deal with in part because you feel so alone, when you’re really not. So many other people are dealing with this, even if everyone finds a different thing that works for them. Now, I’m in this space of trying to accept where things are, and to process how much I’ve attached this issue to my sense of day-to-day worth in the world. I recently learned my aunt deals with this, too, as well as other women in my family. So, now I’m wondering if it’s hereditary.
We still don’t have penis-in-vagina sex, although digital sex has gotten better as I’ve gotten help. But there are still days when we try penetration and I just have to be like, “Nope, let’s back up.”
Jordan: The closest to penis-in-vagina sex we’ve been able to do is me penetrating Jazzmine to a degree. But that’s clearly unpleasant for her, so why would I want to keep doing that?
Jazzmine: Which is why I still call myself a virgin. [Laughs.]
Jordan: But we always try different things in sex.
Jazzmine: Yeah, we’ve tried so many different sex toys and games. We are very curious. We haven’t found any set of activities that reliably work for us. One moment something can feel good, and then the next moment it might feel painful for me.
Jordan: The most important thing for us is to be flexible, and know that we’re not giving up, even if there might be some points where we need to take a break from sex and come back to it.
Jazzmine: When I feel like sandpaper especially, sometimes I have to cry for a bit and we need to take a break, but then we come right back together to be intimate in other ways. We both try to be playful, to touch on each other. We try to still go on dates, to have days where we’re just fun and sexy together.
We’re both students, we both work, and we have a dog, so we’re just always tired recently and we’re not necessarily trying to have sex as often as we used to. For the last year, my pelvic pain has also been increasing, which has limited my ability to be sexual. We are going to a fertility clinic now to talk about how to get pregnant, though. Because of this issue, we can’t conceive a kid like a regular couple—although it took a year to convince my doctor that was the case, and that we needed this kind of help. But we still talk about sex, and if I’m mentally aroused I’ll say things to let Jordan know that like, “Oooo, you’re fine.” I try to be vocal about things like, “Babe, can you hug me? Can you kiss me?” Because I know that he does still worry sometimes about how I’ll respond to physical intimacy at any given moment.
Jordan: I try to make it clear I’m attracted to Jazzmine all the time, whether she’s in lingerie, or in sweatpants and angry about homework. I’ll be like, “Oh you just did an interview? Oooo.”
Jazzmine: There are still moments where I feel like I’m not doing my job as a wife, physically loving my partner. I love where we are, and that we’ve found ways to be with each other, but there is always this way that we just can’t. But I just tell myself that Jordan is here. He loves me and my body. [Cries.] And I’m crying because now I can tell myself, This is real. And it’s OK.
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