If sex hurts, something is not right. And pushing through the discomfort—for whatever reason—can often make the pain worse.
Vulvodynia—a chronic vaginal pain condition that makes it difficult or impossible to have sex, insert tampons, and sometimes even sit down, wear tight clothes, or ride a bike—affects more than 16 percent of women over the course of their life. But because most people have never heard of it, it’s challenging to get help.
Doctors tend to be undereducated about vulvodynia, making it difficult for patients to get a correct diagnosis or a treatment plan. Instead, vaginal pain is frequently brushed off. “People who present with pain with sex are told to just relax and things will get better,” says obstetrician-gynecologist Nancy Phillips, MD, director of the Rutgers Center for Vulvovaginal Health. “But when you are experiencing a recurrent pain in the vulvovaginal area, that’s something that needs to be evaluated.”
GETTING A DIAGNOSIS
Unexplained itching, burning, or pain in the vulva is a signs that you should be assessed for vulvodynia. A systematic evaluation, with a doctor familiar with the condition, will rule out yeast, bacteria, and skin disorders.
Because vulvodynia is a diagnosis of exclusion—it’s determined when you’ve ruled out everything else—doctors who are unaware of vulvodynia might make misdiagnoses and treat their patients incorrectly. “Women who have this reoccurring itching are just treated over and over again for yeast,” says Phillips. Over 60 percent of people with vulvodynia had to go to three or more doctors to get a correct diagnosis. And due to systemic issues with medical access and racial bias in vulvodynia research, women of color have an even higher rate of misdiagnosis.
You may have to be persistent and willing to seek out a doctor who will listen, says obstetrician-gynecologist Gloria Bachmann, MD, director of the Rutgers Women’s Health Institute. “And that’s the key—because it may not be a simple one-stop shop with one clinician,” she says.
You may have to be persistent and willing to seek out a doctor who will listen.
The exact cause of vulvodynia differs from person to person, so treatment plans must be customized to each patient’s needs. Pelvic floor physical therapy is often the first line of treatment, because the muscles and nerves around the pelvis are deeply connected to the feeling and function of the vulva. (This is also why other issues related to the pelvic region, like irritable bowel syndrome and interstitial cystitis, often occur at the same time as vulvodynia.) Other common treatments include compounded creams, medications, biofeedback, nerve blocks, and, in some cases, surgery.
With her vulvodynia patients, pelvic floor physical therapist Amy Stein, DPT, works with a practice called myofascial trigger point release, which helps loosen tense muscles that might be irritating the nerves in the vulva. Once she identifies a trigger point, she helps her patients relax it manually. “We have to gently massage it, stretch it, in the office and at home,” Stein says.
Physical therapists often have patients continue treatment at home between sessions using a vaginal dilator wand.
COPING WITH CHRONIC VULVOVAGINAL PAIN
Sex therapist Stephanie Buehler, PsyD, says that people with vulvodynia can have healthy and fulfilling sex lives with the right tools. Buehler’s first step is to prevent or reverse the fear-avoidance cycle, which is when vulvodynia patients avoid intimacy out of fear it will lead to pain, putting them at risk of physically and emotionally drifting from their partner. “What can happen for women with vulvodynia is that they won’t engage in anything that could possibly lead to having intercourse,” she says.
Buehler helps patients find the balance between engaging in painful sex and completely avoiding intimacy. It starts with clear, open communication. She advises her patients to talk with their partner about vulvodynia and set clear boundaries about what they can engage in sexually. For example, intercourse may be off the table, but oral sex or fingering might be more comfortable.
The National Vulvodynia Association provides information, resources, and support for people with vulvodynia, including a database of vulval pain specialists.