One day in the summer of 2004, I woke up with what I thought was a UTI. I’d had them before and detected the tell-tale burning sensation. I made an appointment with my gynecologist. Little did I know that this would be the beginning of a condition I’d never even heard of but that would leave me in chronic pain for years to come: vulvodynia.
Ye Olde Yeast Infection (Maybe)
The urine test was negative for a UTI when I saw my doctor, but she did discover that I had yeast—another infection I was all too familiar with—and prescribed Diflucan, an antifungal pill that normally starts working within 24 hours. Except this time it didn’t. The burning sensation I’d felt initially was only getting worse. I went back to the doctor, and she instructed me to try boric acid suppositories that I would have to make myself. I dutifully bought the acid powder and gel caps and shoved the homemade suppositories into my vagina for days—to no avail. After weeks of various treatments and no improvement, I didn’t know what to do. My doctor was convinced my symptoms were caused by yeast, but nothing was working.
As the weeks turned into months, daily activities, such as sitting or wearing pants, exacerbated the constant discomfort, and sex with my husband, which had already been somewhat infrequent, became excruciatingly painful and even more uncommon. Every time we tried, it caused a ripping, burning feeling at the entrance to my vagina. We’d been together for five and a half years when my symptoms began and had only been married for a few months. Sex had always been pain-free prior to this new ailment. He was understanding, but I was concerned that this would become my new normal.
About a year after that fateful day in 2004, we left New York for my job. I immediately found a new gynecologist who I hoped would be able to address what I had been told was chronic yeast. When I described my symptoms to the doctor, he said he would run every yeast test known to man but that he suspected I had something else—a condition that another doctor in the same practice happened to specialize in. Sure enough, all the yeast tests came back negative. At that point I was referred to Dr. M, the specialist.
Dr. M was a cantankerous man in his 70s from Brooklyn who started practicing medicine by making house calls in impoverished neighborhoods where he would have to roll his pant cuffs up so that cockroaches wouldn’t hitch a ride on his way out. The first time I met him, he introduced himself and looked down at his pants where there was a small stain of some sort. “What the hell is this shit?!” he barked. “My wife isn’t going to like this!” I wasn’t sure how I felt about this guy rooting around in my vagina, but once the exam started, I immediately relaxed. He was extremely gentle and explained everything he was doing. He told me he was going to touch the entrance of my vagina in different spots with a Q-tip and that I should say how it felt. As the swab came in contact with the lower part of the vestibule on both sides, the horrible burning I had been feeling nearly every day for a year intensified. This, combined with a lack of yeast and my description of my symptoms, was all he needed to confirm my diagnosis: vulvodynia.
What a Pain in the Vulva
Vulvodynia simply means “pain of the vulva” and is a catch-all term that encompasses several iterations of the condition that are defined by whether the pain is localized or generalized. Pain that is local to the vaginal vestibule is known as vestibulodynia, and pain that affects a larger area of the vulva is called generalized vulvodynia. The majority of women with vestibulodynia have what’s called provoked vestibulodynia, which means that the pain is generally only present when pressure is applied to the vaginal entrance through intercourse, wearing pants, tampon insertion, sitting for long periods, etc. Generalized vulvodynia causes more or less constant pain that can be exacerbated by these activities. Unfortunately for me, I had vestibulodynia, but the pain was unprovoked and pretty steady. Sex was unbearable, and even just sitting at work produced a constant burning sensation.
When Dr. M diagnosed me, I was relieved because I finally had a name for what was wrong with me, which seemed like the first step toward finding a solution. He said he was disappointed but unsurprised that I had been misdiagnosed for a year given the number of doctors who were still unaware of vulvodynia. Part of his mission was to change this, but progress was slower than he would have liked. Studies show that up to 16 percent of women in the U.S. have vulvodynia at some point in their lives, yet 60 percent of them have to visit at least three doctors before receiving a correct diagnosis, and a whopping 40 percent are inaccurately diagnosed after seeing as many as three doctors.
Perhaps even more disheartening is that there’s no real cure for this condition, just an assortment of treatments that help relieve the pain to greater or lesser degrees. Part of what makes vulvodynia so difficult to treat is that its causes are largely unknown and vary from woman to woman. Current theories include abnormal response to infection, cellular overreaction to inflammation, hypersensitivity to yeast, pelvic floor muscle dysfunction, and hormonal factors. Though Dr. M thought it was possible that yeast had somehow triggered my vulvodynia, he didn’t know for sure since that wasn’t the issue now.
Lotions, Potions, and Pills, Oh My!
He wasted no time starting a treatment regimen. First, he gave me a list of environmental things to change: wear only 100-percent cotton underwear; switch to a hypoallergenic soap and detergent; flip my head over in the shower so as not to let shampoo or conditioner run down my body; avoid baths, hot tubs, and pools; steer clear of riding riding bikes and wearing pants; squirt water on my crotch after peeing to remove any leftover urine. I dutifully implemented these changes immediately and stuck to them pretty religiously (some of them I still do now out of habit). While these changes dulled the constant burning to some extent, they in no way eliminated it. To attempt to do that, we had to add medications to the mix.
Over the next several years, I tried a laundry list of treatments: topical estrogen cream, lidocaine, a low dose of tricyclic antidepressants, acupuncture, essential oils, more topicals. Nothing really worked, and in fact, while some people do find relief from these methods, most of them have not been proven effective. Some days were worse than others, but mostly I learned to live with the pain. When it got intolerable, I would lie down with a bag of frozen vegetables over my crotch.
Decline and Fall of a Sexless Empire
PIV sex remained unbearable for the most part. Dr. M instructed my husband and me to abstain for long periods (up to six weeks at a time) and then to only have sex in the classic missionary position, which was the angle least likely to irritate the area of my vestibule that was most affected, and for no longer than 10 minutes. Our sex life had begun to fizzle even before I was in constant pain, and these prescribed breaks didn’t help. I started to feel robbed of my sexuality. When we did attempt sex, neither of us focused on much aside from vanilla PIV, which, in hindsight, was a huge mistake. If we had been motivated and interested, we could have found ways to work around the vulvodynia: more oral sex, anal sex, kink. But we never tried any of that. Instead, the gulf between us widened until it was too far to cross. Vulvodynia didn’t end the marriage, but it was the final nail in the coffin. We got divorced a few years after I was diagnosed.
I continued to grapple with the pain amid a newfound anxiety that I would never be able to have sex again, and therefore never be able to be in another relationship. While the environmental changes helped keep the pain at a manageable level on a day-to-day basis, it was always there to some degree; I just learned to block it out. At one point, I asked Dr. M if I should consider going off birth control pills because I had read something indicating that there might be a connection between hormonal birth control and vulvar pain. He dismissed those findings, though, and told me it was unlikely to make a difference. I had been on the pill continuously for nearly 10 years at that point and was happy to stay on it because I didn’t get a period.
My fears about not being able to find another partner were unfounded, but I made compromises. For a while, I dated a woman (even though I knew I was only heteroflexible at best), which allowed me to feel sexual again without the expectation of PIV. Then I dated a man who had sexual issues of his own to contend with, so sex was infrequent. When we did have PIV, there were occasions when it didn’t hurt as much, but I could never figure out any rhyme or reason as to why, and those intervals were always very short lived. Over time, I became so fearful of pain with intercourse that I developed vaginismus, a condition in which the pelvic floor muscles tighten causing the vagina to become a brick wall. I had to focus intently on relaxing in order to make penetration possible at all let alone enjoyable.
In 2013, I moved back to New York with that boyfriend and once again had to find a new doctor. I had joined the National Vulvodynia Association at some point along the way and used their directory of specialists to try to identify someone. Unfortunately, most of the well-known specialists didn’t accept insurance, so my options were limited even in a city this size. Eventually I was able to get an appointment with Dr. L, who focused solely on vulvar pain conditions and took insurance. During my first meeting with him, he went over my entire history in detail and started forming a treatment plan that initially involved more and different topical creams. At this point, I didn’t have a lot of hope but was willing to try whatever he suggested.
Out, Out Damn Pill!
After exhausting an assortment of topicals and seeing a sex therapist who tried a form of hypnosis to help with my vaginismus, Dr. L circled back to the issue of birth control and said I should go off the pill. There was growing evidence that birth control pills were linked to vulvodynia for some women who had malfunctioning androgen hormone receptors due to genetics. Whether I was genetically predisposed was unknown, but Dr. L thought going off the pill was worth a try regardless.
If that didn’t work, the only option left would be a vestibulectomy—surgery to remove the problematic vestibule tissue. Although the surgery has a fairly high success rate (anywhere from 60 to 90 percent) for women with my type of vulvodynia, I really wanted to avoid surgery. At that point, giving up the convenience of not getting periods for a shot at pain-free sex without surgery seemed like the best option, so I stopped taking the pill. My boyfriend and I rarely had sex, but agreed to use condoms as an alternate form of birth control when we did.
Hello, Old Friend
Over the next several months, I started to see improvement not only in day-to-day pain, but during sex as well if I was ovulating. At the same time, my libido went through the roof. I had been on the pill for so long that I hadn’t realized how much it had been dampening my sex drive. Unfortunately, my boyfriend’s issues were not improving in tandem with mine, so I had few opportunities to exercise my resurrected vagina and lust.
Within the course of about 9 or 10 months, I was able to have pain-free sex at any time of the month, and day-to-day activities were devoid of pain as well. My boyfriend and I eventually broke up, but this time I wasn’t afraid that I wouldn’t be able to find someone else. In fact, I met my current partner, Vagabond, several months later.
The pain-free trend has continued in the few years since then. Once a month or so I get a flare for a few hours or maybe a day or two, but then it subsides. The causes of these instances are largely a mystery, though yeast infections are a surefire way to trigger a flare. In the time that Vagabond and I have been together, I’ve felt pain during intercourse a handful of times, but not to the degree that I felt it years ago. Even so, whenever I feel that burn, I immediately become anxious and fearful that it will come back in full force.
I already lost so many years of my sex life to this condition that the idea of losing more after a few years of remission looms large, especially now that I’m in my 40s and menopause—a time of hormonal upheaval—is around the corner. But for now, my vagina is pretty happy, and I have an amazing, kinky sex life with Vagabond. We’ve talked about what we would do if my vulvodynia returns at some point, and he always tells me the same thing: We’ll figure it out. BDSM is about so much more than PIV. If vulvodynia ends up closing a door, I have no doubt that kink will open many windows.