The first time Azia Mery, 25, tried to have penetrative sex seven years ago, she went from feeling nervous to absolutely terrified. Her boyfriend at the time tried to calm her down as they sat naked in his dorm room. “When he had at least a bit of his penis in, my whole body rejected it,” she tells Refinery29. “He kept trying to put it back in and it suddenly felt like there was a wall there — nothing was going in.” Mery felt pain in her vaginal area and didn’t know where it was coming from or what to do. “Throughout the rest of that relationship, we kept trying to have penetrative sex and it [his penis] continued to not go in,” she says. She scheduled a doctor’s appointment not too far from her college campus, hoping to find answers. Instead, the gynecologist gave her two, useless tips: use more lube and drink some wine.
Mery’s experience is all too common. It’s estimated that 10% to 20% of people with vulvas in Australia will develop chronic vulvovaginal pain at some point in their lifetime, although experts aren’t sure of the exact number, mainly because women’s pain is often downplayed and overlooked. Experts believe it’s a relatively common condition, and there are many explanations for why this could be happening to someone, from ageing to psychological problems from past trauma to hormonal shifts and more.
Because of this, treatment is often trial-and-error or ignored altogether. After two years of not being able to have penis-in-vagina sex and seeing multiple doctors, Mery finally got a diagnosis — vestibulodynia, a form of vulvodynia that causes chronic pain in the area around the opening of the vagina, and vaginismus, a catch-all term for conditions that causes the walls of the vagina to involuntarily tighten, and is believed to be caused by muscle spasms. It can make penetrative sex and other actions, such as putting in a tampon or getting a routine Pap smear, incredibly painful. Vaginismus now falls under the umbrella of Genito pelvic pain/penetration disorder (GPPPD), and is grouped into four categories: primary, secondary, global, and situational.
That day, Mery was handed a pamphlet with info about her new diagnoses and sent on her way. “I was quivering and shaking”, she says. “[The doctor] told me, you're going to have a miserable sex life.”
One of the reasons experiencing vaginismus can be so isolating is that the world around us is highly heteronormative, meaning that pleasure is often associated with penetrative, penis-in-vagina sex — and if someone can’t have that, they’re seen as someone who can’t experience the pleasure of sex. But sex is more than just penetrative for people with vulvas, and it is possible for people to experience pleasure in many different ways. In fact, people with vaginas tend to experience more pleasure from external stimulation than internal, according to Kirsten Pickard, nurse practitioner and clinician at U.S.-based FOLX Health. “There are loads of ways to experience satisfaction and pleasure without penetration,” they say. “Part of the problem is when we look at the inability or a lack of desire for penetration as an illness or that something's wrong.” Vaginismus and other conditions that fall under GPPPD are called sexual dysfunctions, but many people with vulvas who experience this don’t feel as though they’re dysfunctional.
“I have actually never had an issue with the other aspects of sex: desire, arousal, pleasure, orgasm,” says Noa Fleischacker, 31, who also experiences vaginismus. “Penetrative sex, for most people with vulvas, doesn't even mean that they would necessarily have an orgasm and so the idea that suddenly we jump into this realm of like, oh, well, you have pain so you can’t have pleasure when, actually, there are so many other ways to have pleasurable sex.”
“We live in a culture that devalues female-bodied people if they are not sexual, and a lot of that sexuality is focused around penetration,” says Pickard. Because we’re immersed in this culture, so much of our value — regardless of if we're straight or queer or have vaginas or are trans — gets based on our ability to achieve penetration, they say.
Take Tori*, 24. She recently graduated from Vanderbilt University, a school where she says hookup culture runs rampant. “I was hooking up with guys and doing everything but [penetrative] sex, so [I was doing] oral sex both ways and that was pretty enjoyable,” she says. But when she tried to have P-in-V-sex, Tori felt like something was off. She went to her doctor and was diagnosed with vaginismus, and suddenly everything made sense. While the goal for Tori is to have pain-free penetrative sex, she tells Refinery29 that she feels she has a satisfying sex life. “After [getting a diagnosis], it was more helpful to go into a sexual situation and know that I’m not going to have [penetrative] sex, I’m going to do other things,” she says.
Unpacking the notion that penetration is the only form of “real” sex is important in moving forward with treatment. “That’s kind of a fairy tale that we're all just subconsciously accepting,” Pickard says. For people experiencing vaginismus, Pickard adds that a lack of penetration “does not impact their value or their worth as a partner, as a sexual being, and how they choose to engage in the world.”
Mery agrees. When she talks to prospective partners with penises about sex, she reminds them that although she may not be comfortable with the penetrative aspect of intimacy, she is still very sexually active. “There are so many ways we can have fun, and if you feel comfortable with these boundaries I'm setting, I'm more than happy to get to know you and continue what we have,” she tells them.
Sex is also genderless — anyone can have it with anyone else (as long as it’s consensual, of course). “I have had sex with people of all genders and genitals, and penetration truly isn't the end all of sex,” says Sydney*, 29. “There's so much you can do with fingers, tongues, and more — bodies are weird and sex is weird!”
“Arguably, sex is pleasuring yourself and your partner together, but even that definition feels too limiting. Sex doesn't need to end in orgasms,” she says. Sydney experiences pelvic floor dysfunction. She’s currently in a relationship with a man who has a penis, and they’re able to navigate their sex lives in a healthy, satisfying way. “I've been able to have penetrative sex and it is intensely pleasurable, but we both actually prefer non-penetrative sex because it's easier and better for both of us,” she says.
Because there isn’t a ton of knowledge about this condition — yes, even from doctors — people who experience vaginismus have taken matters into their own hands for organising around the issue and bringing more awareness to it. Mery founded Dilato, a free, community-based resource for people who experience vaginismus. “We recently hosted our very first free workshop to celebrate our pleasure and bodies,” Mery says. “Events like this have helped many folk with vaginismus overcome the mental and sexual challenges of the condition, and our community is always open to the public for anyone to join and seek solidarity.”
Fleischacker knew something was off when she had to be put under general anaesthesia for a routine pap smear, and she has since founded Tight Lipped, a grassroots movement for people with chronic vulvovaginal and pelvic pain, where she currently serves as executive director. Sydney is also a member. Their current campaign is focused on bridging the gaps in OB/GYN training and education In the U.S. when it comes to chronic vulvovaginal pain. “Your typical OB/GYN is not receiving any training unless they seek it out themselves or unless they happen to go to a program with a specialist on faculty,” she says. It's unclear whether this is the case for Australian practitioners as well.
The good news is that there are ways to treat vaginismus to help make the pain more bearable. “It takes a degree of commitment, time, and relaxation, and it is a bit of a process, but I certainly work with people who desire penetration, and we've worked with a regimen until we were able to have successful penetration,” Pickard says.
People who have GPPPD can receive a number of treatments to alleviate their pain, from pelvic floor therapy to vaginal dilators to psychological therapy. “We live in a culture where there's a lot of shaming and devaluing of oneself, especially around vaginas, and so I think encouraging people to find joy in the process of healing from this and acceptance of themselves is important,” Pickard says.
Tori has accepted what’s going on with her body and this condition, and the end goal is to be able to have penetrative sex without pain. She currently uses dilators to help gradually improve flexibility in her vagina. “I’m fine, you know. People live with this. I have what I consider to be sex, and in my opinion, it’s good sex,” she says. “It’s a condition that is difficult, but even if you’re not past it you can have a normal sex life… I’m going to go out tonight and hope to have sex with a person, and I’m not worried.”
Sex is just one part of how vaginismus and other chronic vulvovaginal pain can manifest in our bodies, and we won’t continue to learn about these conditions unless we speak up and start normalizing them. “It's just like having any other health issue,” Fleischacker says. “It doesn't have to carry this deeper weight to it.”
*Names have been changed to protect identities.