By Sara Gaynes Levy

When Liz* had sex for the very first time with her college boyfriend, it hurt. A lot. But she figured that it was first-time awkwardness. After all, “everyone tells you ‘it’s gonna be crap,’” she says. “But then the second time was crap. And the third time was crap. And I was like oh my God, this is not going to get any better.” 

Liz, now a teacher, made an appointment with a gynecologist, who diagnosed her with vulvodynia and vulvar vestibulitis, a poorly-understood series of conditions that are marked by extreme pain and inflammation in and around the opening of the vagina. Because these issues are not well researched or understood, treatments can vary wildly, and Liz was prescribed a topical, numbing lidocaine gel for use before penetration—which she says not only didn’t work, but also didn’t feel great for her partner either. She was also advised to take an anti-seizure medication, to interrupt nerve signals. Unfortunately, these treatments didn’t improve Liz’s situation. Sex continued to be excruciatingly painful, and her doctor told her the only remaining option was surgery. Then, Liz and her then-boyfriend broke up. Unsure if she wanted to go the surgical route, especially now that she was single, Liz more or less swore off dating.

“I moved to a new school district, got a new job, bought a house,” she says. “Dating just wasn’t a priority. I thought, I’ve got plenty of time.” Then, in March 2020 just before the world shut down, Liz went to her doctor for a pap smear. It had been a while since her last one, and she hadn’t been having penetrative sex, so she had sort of forgotten just how painful her condition was. The exam was a cold shock. “I drove home from that and cried for hours,” she says. “Not because I was still in pain, but because I had forgotten that it would hurt so much.” After a few years of trying to push the thought of dating and sex out of her mind, a huge wave of sadness washed over her in the car. “I was sobbing,” she says. “I thought, No man is ever going to want me, because my vagina is broken. If nobody’s gonna want me, I’m never going to have kids—I can’t afford them on my own. I’m going to die alone with a million cats. I got on the pity train for myself, and I rode it all night.” 

In the morning, after she stopped crying, she decided there had to be another option. Surgery couldn’t be her only way out of this. So she went online, and quickly found that there was a sexual wellness center right in her town, which she called immediately. The woman Liz spoke to suggested some resources she could access right away, including a book Liz says she “bawled” her way through. Because that was when she learned about vaginismus, a physical and psychological extension of conditions like vulvodynia where the vaginal muscles involuntarily contract causing pain with penetration. Vaginismus can become the body’s learned response to the pain associated with penetration, leading to a vicious cycle: sex, which would be painful anyway, becomes more painful due to the additional, involuntary muscle contraction. But unlike vulvodynia and vulvar vestibulitis, vaginismus has a more clear treatment plan, a thought which immediately gave Liz some hope. “I was like oh my God, this is a treatable condition,” she says. Liz made an appointment to visit the sexual wellness center, where she was referred to start pelvic floor physical therapy, begin using vaginal dilators, and see a sex therapist.   

With the help of her therapists, she realized that she’d been avoiding all types of intimacy due to her fears around her condition. “I was looking back kicking myself, realizing how many years I was actively avoiding guys who were flirting with me because I knew I’d have to have this conversation. And I didn’t want them to know, and reject me.” 

Liz began to feel ready to test the waters and put herself back out there. Bumble was a perfect option. “I like being the one who has to message first,” she says. Having that control has let her put some of the things she’s learned in therapy to the test, like deciding when to disclose to potential partners that she has this condition. “I’m learning what it’s like to educate people,” says Liz. “Guys tend to bring sex into the conversation very early, so if I put out there ‘hey, I’ve got this condition and you’re welcome to ask me questions about it,’ and I get intelligent questions back or they say ‘wow, that has to be hard for you to talk about, thanks for being honest,’ those are good responses,” she says. On the flip side, disclosing that intercourse is painful for her can be an easy screening tool: if someone is just looking for sex, Liz tells them to move along. 

A few months ago, Liz met someone on Bumble she really clicked with. They had a few great dates, and he “passed all the tests.” One of his shining moments? When Liz revealed her condition, he asked if anyone had ever taken it as a challenge to give her the best oral sex of her life. “I was like, I appreciate the sentiment!” she says with a laugh. Her therapist was so proud: after years of worrying about how her condition might affect others’ ability to experience pleasure, it was time she put her own into focus, and this guy seemed to get that. “I was like, okay, I could see sleeping with him,” she says. Before they did, he called things off, telling Liz that he wasn’t ready for a relationship with someone who seemed as sure of themselves and what they wanted out of life as Liz did. For someone who had felt so insecure about their dating life for so long, the breakup was actually a compliment. “You know what? I’m 33. I do know who I am as a person. Shouldn’t you?” Liz recalls thinking. 

Even though it didn’t work out, the experience invigorated Liz with a new zest for dating. “He set the bar so much higher than it had been in the past,” she says. “Bumble helped me to figure out how I deserve to be treated. Now, I can vocalize that and use it to help me find the right person for me moving forward.”

*Name has been changed