It took five years, two dozen doctors and roughly $5,000 in medical bills for me to be diagnosed with vulvodynia, a condition defined as chronic vulvar-vaginal pain lasting more than three months, without any identifiable cause.
I was the ripe old age of 20 when vulvodynia set up shop in my nether regions, causing a daily, raw pain.
I attended doctor appointments religiously, in sheer horror at what my body was going through. I wanted to know where the pain had come from, what it was called and how I could fix it. Ultimately, however, I would leave with more questions and a gnawing sense of despondency.
Repeated tests, biopsies and an explorative surgery or two all came up normal — a word I could not guess would be so loaded for my 20 year-old self.
I did not feel “normal.”
Despite the test results and the passive attitude I would find repeatedly from various medical professionals, I refused to imagine that intense vaginal pain was anything in the realm of my usual bodily function.
Months were spent moping around my apartment in a hopeless, lethargic haze, wondering what life might be like without my undiagnosed vaginal pain.
If you read the treatment suggestions for vulvodynia on sites like WebMD, you will find a list of things to avoid: biking, tight-fitting clothing, fabric softener, sex.
When you have a chronic condition though, you find your new life as a series of losses that WebMD will not prepare you for.
There were the dates I could not go on out of fear of painful sex, the friendships I would lose with women who did not understand the hulking depression I would go through, and there were the insufferable diets I’d try. There were pills I’d be prescribed, the financial stability I’d lose through doctors’ bills, and worst — the total corrosion of my self-esteem and feminine identity.
Holding onto your self-value and past identity while you redefine yourself as a woman with a “broken” vagina is an arduous process that I do not wish on anyone.
I remember those years on the occasional Saturday night when I would zip myself into a pair of skinny jeans and drag myself downtown, thrilled with the idea of youthful adventure and in total denial of my pain (side note: Please do not try to drink away your health issues, it does not work). Most days, though, I grew into yoga pants and nights in front of the TV like I was in a soft depression cocoon.
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Vulvodynia is very much an “invisible illness” — that is, to the general public, to your family, to your friends and even to your doctors, everything from your body to your blood tests look entirely normal.
And while no one ever wishes to look ill, there is an incredible frustration one experiences in their inability to accurately explain an invisible pain to those around them. This frustration was compounded by the fact that the words “vagina” and “pain” typically made those around me squeamish.
The time, energy and money I put into finding a diagnosis for my mystery pain would not surprise the estimated 2.4 million women suffering from vulvodynia worldwide, according to a survey completed by the National Institutes of Health.
Women with vulvodynia find themselves undiagnosed all too often. A study completed in 2011 found that only 48.6 percent of women meeting the vulvodynia criteria sought treatment, and only 1.4 percent had been diagnosed.
There are multiple factors causing this issue in our healthcare, including the overarching unawareness of the condition by medical providers, the taboo of women’s health issues and the complexity of the disease itself.
Women suffering from vulvodynia face a daily battle entirely on their own, whether they have mild, burning pain like myself, or the total inability to have sex or struggles from childbirth.
There are some cases where women experience their pain from birth and other cases where women remember the day it came on. Some women’s pain comes and goes, while others is constant.
The various presentations of vulvodynia are just one of the ways in which it is complex. The exact cause is still unknown, but is assumed to be related in part to hormones, muscle and nerve dysfunction in the pelvic floor, food and environmental allergies or possibly an autoimmune disease.
The treatments are as varied as the symptoms, and many women go through multiple treatments before finding some relief, including physical therapy, diet changes, bioidentical hormones, steroids, surgery to remove part of the vulva and medications to calm nerve function.
The only commonality to this illness is the chronic pain and the diagnostic test. Usually administered by a pelvic pain specialist, during the “cotton swab test” the specialist places a cotton swab on the vulva in six different areas.
For the vulvodynia sufferer, this pain is intense in a way you could not imagine a cotton swab could be.
Despite issues like erectile dysfunction being the topic of daily TV commercials, “vaginal dysfunction” are two words you most likely have never heard.
The silence, though, is not an accurate indicator into the prevalence of these issues. According to the International Journal of Obstetrics and Gynecology, chronic pelvic pain is an issue affecting an estimated 9.2 million women in the U.S. alone.
There are a plethora of women’s chronic pelvic pain conditions, not limited to vulvodynia, that get little public attention, including endometriosis, pudendal neuralgia, pelvic floor tension myalgia and interstitial cystitis.
It is only out of my incredible frustration and persistence that I was able to obtain a diagnosis of vulvodynia. That is, I did not find out about this illness from a medical provider, but from another woman in my pelvic pain support group three years ago.
This level of self-advocacy is a truth in women’s healthcare — it is often a quiet and personal process. Perhaps with enough public exposure, though, the experience of living with and treating chronic pelvic pain can become less invisible and isolating.
Hannah Eisenberg is a culture reporter at the Daily Lobo. She can be contacted at culture@dailylobo.com or on Twitter @DailyLobo.The views presented in this column are her own.
