Sonia Rivera was 19 when she first tried to have sex with her boyfriend. But it didn’t work — her vagina refused to let him in. Sonia tried to get a finger in herself, but it was excruciating. When she first told her gynecologist about it, he didn’t know what was wrong.
After some research, the gynecologist diagnosed Rivera with vaginismus, a condition in which the vagina contracts involuntarily, making penetration unbearably painful. It’s hard to say how unusual Sonia’s experience is — estimates for the condition’s prevalence range anywhere from 1 to 30 percent, according to a 2008 review by researchers at Syracuse University.
Like Rivera, some don’t realize they have it until they try vaginal sex, use a tampon or visit the gynecologist. Others may have been having sex for years before their vagina starts contracting against their will.
Similar to vaginismus is a condition called vulvodynia, which includes chronic pain symptoms of burning, stinging, irritation, or itching of the vulva (the external genital area). Between 7 and 16 percent of women experience vulvodynia at some point in their lives. Yet, as is the case with vaginismus, few people — including doctors — know about it.
“I had been seeing three different doctors, telling them I have these symptoms of itching, burning pain, but they didn’t find evidence of anything wrong,” says 29-year-old Megan, who asked not to use her last name for privacy concerns. It took Megan nearly four years to get diagnosed with vulvodynia, she says. “My pain was brushed off by doctors, like, ‘Oh, it’s normal, it’s not that big of a deal.’”
There are some strategies for explaining these symptoms to your doctor, says Elizabeth Hintz, who both has vulvodynia and studies it in relation to health communication as a Ph.D. student at the University of South Florida. One involves sitting with a mirror and touching your vulva to figure out how and where things hurt prior to your appointment. “Know where the pain is located, how it feels, and what makes it better or worse.”
Vaginismus: ‘This is really treatable’
The standard treatment for vaginismus is using dilators, which are essentially dildos of varying sizes, to train the vagina to relax during penetration. However, there’s not significant evidence to support this practice, according to a 2012 review of five studies of low to moderate quality.
But Bat Sheva Marcus, a sex therapist and the Clinical Director of Maze Women’s Health Center, says dilators are “extremely effective.” For Sonia Rivera, it was.
After using dilators two hours a day for four months (a dedicated commitment, she says), Rivera was able to have vaginal sex without pain — and even enjoy it.
Dilators alone aren’t always enough to cure vaginismus. This is particularly true for people who have a fear of penetration, which commonly accompanies the condition. It’s not known whether fear of penetration is a symptom or a precursor to vaginismus, but for some patients, treating that fear with psychotherapy, relaxation exercises or anxiety medications can help, Marcus says.
Additional treatment can include physical therapy or even Botox injections into the vagina, which help the vaginal muscles relax by blocking nerve signals Botox can be prohibitively expensive (one estimate puts a $5,850 price tag on the procedure) difficult to access and isn’t always covered by insurance. But Dr. Peter Pacik, a retired doctor who pioneered Botox for vaginismus, claims a 90 percent success rate. Several small clinical studies have also reported success, albeit at lower rates.
“We pretty much can solve every single case,” Marcus says. “It breaks my heart that women feel like they’re crazy and there’s no help for them, because this is really treatable.”
Vulvodynia: ‘Not a nearly 100% success rate’
Unlike vaginismus, there is no standard treatment for vulvodynia. Instead, treatments should be combined, tailored to the patient and focused on managing pain and getting the pelvic floor muscles back to normal, according to a 2016 review.
One treatment option is surgery to remove pain receptors in the vulva, which improves or cures between 65 and 90 percent of patients — compared to 40 to 80 percent for other treatments — according to a 2016 review article. However, this treatment is a last resort, according to the American College of Obstetricians and Gynecologists.
Hintz, the health communications researcher, asked her gynecologist about the surgical procedure, and was discouraged from seeking it. “I’m glad,” Hintz says, “because the pain got better over time.” Her current regimen includes a lidocaine numbing cream, which on most days works to quiet Hintz’s pain. The cream reduces pain by about 20 percent, according to a 2010 study. But some days, it just isn’t enough. When that’s the case, she also takes the pain medication tramadol.
Other treatments for vulvodynia include physical therapy, low level lasers, salt baths, acupuncture, nerve blocker injections (including Botox) and various oral drugs. But sometimes none of these work.
“Vulvodynia is just now being more understood better,” Marcus says. “There’s not a nearly 100 percent success rate like we have for vaginismus.”
Some people with vulvodynia may not be able to find a treatment that completely eases their pain. They may be unable to have vaginal sex the majority of the time, which can complicate romantic and sexual relationships. One way to navigate this relationship challenge is to redefine what it means to be intimate.
“Some couples will spend more time together, cuddle, kiss. They can do other sexual acts that don’t involve vaginal penetration,” Hintz says. “A lot of it involves an openness to change and ways to be creative in the bedroom.”