“My Body is a Mystery to Me”: Vulvodynia in the Pandemic

Our clinic should have been empty.

First, it was early June 2020 in midtown Manhattan, just weeks after New York City had been the epicenter of the COVID-19 pandemic. Phase I reopening had not yet begun, and the city was a ghost town. Second, our clinic – the Centers for Vulvovaginal Disorders – is so specialized that many of our patients travel long distances to be seen by our doctors. And finally, the vast majority of the conditions we treat are not life-threatening. Given all this, it was shocking to see our patient days fully booked as soon as we reopened. Hundreds of patients have risked contracting the virus to be treated for conditions most people have never heard of. These conditions fall under the umbrella term vulvodynia.

Vulvodynia refers to chronic pain disorders in the vulva. The vulva is what most people think of as the “vagina,” encompassing not only the vaginal canal (what the vagina actually is), but also external organs such as the clitoris, the large and small labia, and the urethra. Vulvodynia is diverse: the pain can be constant or only occur during sex, range from mild discomfort to debilitating misery, and be accompanied by other symptoms such as urinary frequency or constipation. I have read blog posts and articles about how vulvodynia patients are relieved just to hear it named. The power of validation through diagnosis is significant for these people, most of whom have had to deal with providers who tell them their pain is purely psychological.

Dr. Andrew Goldstein, the head of the Centers for Vulvovaginal Disorders, points to a model of the vulva / pelvic floor muscles which he often uses to explain different conditions to patients. (Theodora Mautz for The Xylom)

However, vulvodynia is not itself a proper diagnosis, as it says nothing about where in the vulva the pain is coming from, what is causing the pain, or what the best treatment options are. It would be akin to diagnosing someone with “back pain,” without specifying whether that back pain is due to arthritis, osteoporosis, or any other number of actual disorders. With few specialists in the field of chronic vulvar pain, many doctors are unable to give more specific diagnoses, not to mention treatments. That is why patients travel from all around the world to see our doctors.

The five most common disorders our clinic treats are:

1. hypertonic pelvic floor muscle dysfunction, or pelvic floor muscles that are too tight and in spasm;

2. congenital neuroproliferative vestibulodynia, a genetic mutation in the tissue surrounding the vagina that causes too many nerve endings;

3. hormonally-mediated vestibulodynia, or irritation in the tissues of the vulva due to menopause or birth control pills (yes, your birth control pills can deplete your vulva of hormones it needs to stay healthy - particularly testosterone!);

4. pudendal neuralgia, or injury to a major nerve in the vulva; and

5. lichen sclerosus and erosive lichen planus, which are autoimmune skin disorders.

Of course, this is by no means an exhaustive list of the causes of vulvar pain; endometriosis, cancers of the reproductive organs, and other disorders also cause chronic pain in millions of people worldwide. More research on all of these conditions is needed, especially given that an estimated 16% of people with vulvas experience chronic vulvar pain at some point in their lifetimes. Alarmingly,