I Have Vulvodynia — But It Took Years to Put a Name to My Pain
I was at an indoor community pool when I felt the first painful, burning sensation between my legs — the one that would stay with me to this day. I was 14, had never had a period, had never kissed a boy, and had no chances of an STD.
Embarrassed and ashamed, it took me a few months before I shared with my mother what was going on. She took me to the doctor, and they checked me for a urinary tract infection (UTI) and a yeast infection. The doctor asked me a series of questions that I answered red-faced.
“You’re not testing positive for anything,” my doctor said. So I went home and let the pain continue.
The burning was off and on, but when it was full-blown, it left me in excruciating pain every time I sat down, like a nail was scratching the inside of my vagina. A few months later, my mom asked me “how I was doing down there.” I told her I was fine, and that it had pretty much gone away. A lie.
Almost a year later, I mustered up the courage to go back to the doctor. I was 15 and had just had my first kiss and my first period. I hated using tampons. The thought of rounding any further sexual bases sounded too painful to imagine. Later, when a boy fingered me for the first time, all I knew was that beyond any aspect of “feel good” that came with it was an overriding, undeniable pain. I avoided getting intimate with anyone because of my embarrassing condition that seemed to have no name.
That second doctor asked me more detailed questions, tested me again for a few more things, but still — nothing.
Searching for answers, chasing relief
Following this doctor’s appointment and several others came years of research and Googling my symptoms on medical websites, blogs, and chat boards.
I read that I should only wear cotton underwear and sleep in loose shorts. It helped.
Another website told me to follow a diet low in oxalates, a chemical compound in food. As it turns out, a lot of foods are high in oxalates. This piece of advice was much harder to follow than sleeping without underwear.
When I was a junior in high school, I read that cutting gluten out of my diet would help with the burning sensation. It decreased the sting for whatever reason, and while the pain wasn’t completely gone, the flare-ups were fewer and farther between. When people asked me why I went gluten free, I told them I had stomach issues. I wasn’t about to tell Danika from the lunch table that it made my vagina feel better — I couldn’t even muster up the courage to tell my closest friends.
Eventually, my research led me to find a possible name to what was wrong with me: vulvodynia. Vulvodynia is the name given to chronic pain in the vulva with no clear cause. Knowing what it was, or at least having a name to put to my pain, allowed me to research more clearly and tell doctors what I thought was going on with me. If this “thing” had a name, then why didn’t any of these doctors know about it? Why did 90 percent of the appointments I had, even at the gynecologist, end in me telling them about it?
The treatment that finally worked
If I was going to get better, I realized, I had to fix it myself. Living in Los Angeles, I had an abundance of great medical resources available to me. As I was Googling treatments for this not-so-good, horrible thing I was dealing with, I discovered a physical therapist who focused on pelvic floor treatment and had experience working with patients who had been diagnosed with vulvodynia.
Her name was Eileen, and she was patient and kind, reassuring me that there were many other women and even young girls out there who were going through the same thing. Many of the young girls she saw were athletes whose sports required tightening the muscles in the body, such as track jumpers and gymnasts. This piece of information struck me because I grew up doing gymnastics and cheerleading. She explained to me that it was the tightening and pinching of the nerves that ran through the vulva that caused the burning sensation, and that this tightening could also be caused by stress.
Pelvic floor therapy left me physically vulnerable and open. My therapist used her fingers to show me what muscles needed loosening. It involved external and internal massage and the use of long, ovular, plastic expanders of different sizes to begin to stretch out the vaginal muscles. I was assigned “homework” and was taught to recognize which pelvic floor muscles were tight and what exercises I could do to stretch them out.
In conjunction with therapy, I began practicing yoga, which stretched my body and the connecting muscles and nerves in ways that sped up my healing tremendously. When I was finally able to have sex without pain, my physical therapist celebrated with me. Pelvic floor therapy was a saving grace that took me one step further in dealing with my vulvodynia.
When I was diagnosed with panic disorder in my early 20s, all of the knowledge I had gained about the pinching of nerves and muscles made so much more sense. When the body goes into “fight or flight” response, everything tightens, and this was a factor contributing to the burning I was feeling.
I began taking anti-anxiety and anti-depressant medication, and it was the best solution for my vulvodynia to date. I read that serotonin in the medication could help in some cases of vulvodynia. I also began seeing a therapist, and as my mental health got better, so did the pain — though to this day, it still comes and goes.
I am a 24-year-old young woman living with vulvodynia, and it is something that I have grown to accept and embrace about myself. I have spent a decade of my life hurting and healing and growing. Throughout my journey with this not-so-good, horrible thing, I learned more than ever how interconnected everything is in the body and how my condition wasn’t caused by just one thing.
When I first began experiencing symptoms, I had never even heard of vulvodynia. Now, every time I see it mentioned in an article online, I feel more hopeful that discussing vulvodynia is becoming less taboo, and that all the women who are suffering in silence are aware that they’re not alone. I feel comfortable in knowing that I can share my experience with others in the hope that it will help them to find the right treatment for them.
For more information on vulvodynia, visit the National Vulvodynia Association website.
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