What Is Vulvodynia?
Inside the vaginal condition that is receiving little gynecological attention. Why are women's genitalia so misunderstood?
“Shit,” I thought. Why was my body playing games with me? I thought I felt a slight itching “down there” as my eighth-grade self had been taught to call it. I sat there uncomfortably in the plastic chair trying to distract myself with the teacher’s voice droning on about geometry, a subject I used to be interested in but now couldn’t quite absorb with the slight burning growing. Every two or three minutes I would glance out the window, my classic ritual of boredom, except now it was punctured with thoughts of worry as I wondered if the discomfort was real or not.
“Jenna! Come on ! Get in the car!” my mom enthusiastically bopped to the car that evening to take me to Tae Kwon Do, the classic 2009 tomboy sport. I faltered. It was exactly four days and four hours since the burning had first afflicted my vulva, and it had intermittently and boldly come back several times, that moment being one of them. After the initial waterworks of embarrassment, I managed to tell my mom what was happening—despite me barely being able to ask her to take me bra shopping two weeks ago, which had also resulting in hysterical crying. We decided tomorrow she would take me to my primary care physician, the only doctor I had seen in the past eleven or twelve years.
I sat in the white and green sterile room, bows and purple hearts decorating the curtains hanging in the window. The blinds were shut, as I had immediately requested after entering. I was alone in the exam room, having whined at Mom until she left, being so embarrassed to even speak about the pain’s location. After a prying Q-tip exam, the doctor came and went. He prescribed A & D cream, a burn ointment equivalent to Cortaid for bug bites or Neosporin for cuts, calling my ailment "nothing serious, just a few premenstrual pains.” Apparently, I’d “get over them in a couple months after a first period.”
A lot happened in the year following, but it can be easily summarized. I got my period, the pain got worse. Two boys had tried to touch me there and not only was I repulsed, but a sharp burning would occur each time. As winter approached the following year, the pain worsened to the point I would leave school early most days, crying for an hour in the bathroom. It was a sharp stabbing, generalized to the vulva—a term I had learned from laying up until 1:00 am on my phone most nights searching for the cure, which ends up being different for most individuals. I came across the diagnosis “Vulvodynia,” but didn’t want to imagine that’s what I had because it was the queen of vaginal problems according to several desperate forums started by patients.
Finally, a year and a half after the start of the burning, I was taken to a gynecologist at fourteen. I cried in the car. I cried in the waiting room. I cried during the exam. I cried when the doctor gave me a pamphlet with vague information—"Vulvodynia: Learning to Cope." I didn’t want to cope, I wanted a cure. Lucky me: there wasn’t one, only under-researched treatments.
“Well, it doesn’t affect men and it can’t kill you, so there’s no research!” my doctor laughed. I cried more. It wasn’t funny.
What happened in the following years is slightly harder to condense, so below are the more memorable moments. I went to forced therapy, listening to a lady compare my vagina to a “toothache, easily treated in four to six months.” She was wrong. Four to six months passed, and I moved from a gynecologist in northern New Jersey to one two hours south in Philadelphia. I began going to a physical therapist an hour away two times a week, leaving school early constantly so she could put her fingers in my fourteen-year-old vagina and push the muscles around.
Philly Gynecologist One gave me a set of six cortisone shots into the nerve locations in my vulva every month for near a year. Simultaneously, each night she expected me to put Valium up my vagina and follow it with a hard piece of plastic, widening in diameter as the months went on. That’s one of the most common treatments for this condition: “dilating,” and unsurprisingly it was very painful, as almost all treatments for this condition are. To help with my constant crying and “depression,” I was put on antidepressants which at 15 turned me suicidal and psychotic. During this time, a doctor put a catheter in me unnecessarily and filled my bladder with fluid to an excruciating point for a “test,” which I later found out was far outdated, giving me chronic UTI and yeast infections for several years. Not to mention I was taking around fifteen pills a day, a trend for many patients. Healthcare companies don’t find this “medically necessary,” due to continuing stigma against chronic pain, so likely you’ll switch medications often.
Eventually, Philly Gynecologist One passed me off to Philly Gynecologist Two, in the hopes that surgery was the right option. The first surgery was butchered when the surgeon ripped the stitches out of my healing vagina after two weeks. The second surgery repaired the damage the first had inflicted as well as took grafts of my skin and folded them over raw nerves. It was mostly unsuccessful, as these surgeries often are when done by inexperienced surgeons who rarely get to complete vestibulectomies. The third surgery was a waste of anesthesia, as barely anything was touched. A couple years later, I was given a fourth surgery to remove extra bone for both of my hips, which was thought to contribute to my vulvar pain. I couldn’t walk for several weeks, and at 21 years old, my hips still get stuck if I sit wrong.
Now, I am wondering if the vestibulectomy I had several months ago, my fifth surgery for Vulvodynia, will work and if my vagina looks weird with all the scarring. I am wondering if I have no interest in vaginal penetration because I am queer or because penetration is associated with pain. I am still wondering why Vulvodynia isn’t getting any research funding, when it has a lifetime prevalence of 16% (1).
I am wondering why there are less than ten competent doctors that treat this anywhere near the east coast, causing individuals to wait months for an appointment that won’t bring any immediate relief. Vulvodynia is not going anywhere unless we collectively fight for accountability in the medical industry from providers, insurers, and academics.
(1). Stewart and Harlow, “A Population-based Assessment of Chronic Unexplained Vulvar Pain” in Europe PMC (2003).
If you want to know more about Vulvodynia, consult the following resources:
National Vulvodynia Association (NVA) Self-Help Guide
Multidisciplinary Research in Vulvodynia NIH Grant