This Painful Condition Goes Undiagnosed In Women

Following in the footsteps of things like the recent endometriosis education movement, the National Vulvodynia Association (NVA) has launched its new Indivisible: Breaking the Silence campaign to raise awareness for the chronic pain condition vulvodynia, following Invisible Illness Awareness Week. In the whirling crapstorm of navigating reproductive health as a woman, there are a billion obstacles. Coming to light more recently is that even doctors seem to be complicit in failing to take women's pain seriously and, in turn, misdiagnosing them. Recently, an Atlantic reporter's account of his wife's traumatic ER visit — in which she went some 13 hours without a diagnosis for ovarian torsion, leading to the loss of her ovary — inspired an entire collection of "stories from female readers recalling times when doctors dismissed, downplayed, or misdiagnosed their painful health conditions."

So what is vulvodynia? The chronic condition affects the vulva and it can make simply living with constant pain near the opening of the vagina unbearable and sex virtually impossible. The sensations women experience vary, but they've been described as burning, throbbing, sharp knife-like pain, itching, and irritation, and they can present only when applying pressure to the vulva (like during sex, while putting in a tampon, or when wearing tight clothing), or, a woman can simply be feeling pain in the area all the time.

And while as many as 16 percent of women across all ages, races, and ethnic backgrounds may experience vulvar pain, vulvodynia goes undiagnosed with staggering frequency, leaving women in excruciating pain with no explanation. According to the NVA, research has shown "that the inability to talk about the condition further isolates women leading to depression and anxiety," compounding their heath issues. Of the women with vulvodynia, only 40 percent are correctly diagnosed after seeing one or two doctors. Thirty-six percent have to see three or more doctors to get a proper diagnosis, and 25 percent see four or more without ever getting diagnosed. The cycle of pain, ignorance, and gaslighting women into believing their pain is fictional causes even more distress.

"The patient who is having pelvic pain or sexual pain often experiences guilt, inability to perform sexually, sadness, and hopelessness," says physical therapist Dr. Pamela Morrison tells Bustle. "Once a patient begins to feel all of those things emotionally, it can ignite the sympathetic nervous system, which can actually turn the intensity of pain up and worsen the patient's experience."

It took one patient, Callista Wilson, until age 34 to experience pain-free sex. "I was told by one of my doctors, 'You're probably just going to have to live with this for the rest of your life,'" she recalled. "And, 'Maybe you should just try to stop thinking about it so much.'"

Even more challenging is that, since vulvodynia is not strictly a gynecological condition, it can take multiple doctors working together as a team to form a solution. Women may need to see a vulvovaginal specialist, for example, to treat the problem, as well as a dermatologist, neurologist, pain management specialist, urogynecologist, or a physical therapist. The emotional toll of living with chronic vulva pain may also necessitate incorporating a therapist into a sufferer's care team.

Treatments for vulvodynia include everything from surgical intervention and various numbing medications to physical therapy and straight up icing down your vulva before and after intercourse. That's on top of a strict list of what can and can't go near your vulva if you have the condition (pantyhose, most laundry detergents, and scented skin products are all verboten).

But the first step if you think something might be wrong is to find a physician who takes your pain — whatever it may be — seriously enough to work closely with you and come up with a care plan. It's not uncommon to need to visit multiple doctors before you find a good fit. That's an unfortunate truth in women's health right now, but the more informed you are, the more empowered you can be.

Images: Andrew Zaeh for Bustle; Giphy (2)