"I was 18, in the summer of my freshman year of college, and I had been sexually active for at least two years with no problems. And then one day I started feeling this kind of burning sensation. It started with intercourse at first. I went to my doctor, and she told me I had a vaginal infection. She gave me a vaginal cream to use for the infection, and I went back in a week's time after I had finished using it. She told me the infection was clear, but the pain never went away."
"This turned out be a process that I would go through for the next many months: back to the doctor, back to the doctor, back to the doctor. She kept telling me that there was no infection, and she couldn't figure out why I was having this pain. She gave me creams and ointments and other things to use. And during this time, the pain got worse, progressing from just intermittent pain or burning during intercourse to hurting when I sat down or wore pants.
"And then eventually it turned into an all-the-time pain—24 hours, seven days a week, to the point where it was hard to function in every day life. By this time I was a pre-med student in college. At the height of its severity, I was taking an exam, and the pain was so intense that I had to get up and turn it in half complete. I drove straight to my doctor's office, without an appointment, and just sat in the waiting room until she would see me. I couldn't believe that there was nothing to be done about this. I refused to believe that women were experiencing this and going about their everyday lives with this pain.
At this point in time, I wasn't able to have intercourse or be sexually active. I couldn't even tolerate being touched in the area with a cotton swab, which is the diagnostic test used for vulvodynia. At the end of that emergency visit with her, she just said, 'I'm not sure what's wrong with you; I think you may have a condition called vulvodynia.' And she handed me a photocopied brochure from the National Vulvodynia Association (NVA), which had just incorporated a few months before that. She told me there were no treatments available, that she didn't know any specialists, and that maybe I should call the NVA. (I would later discover that that were specialists and treatment options.) First, I did my own investigation. I went to the medical library and ordered anything I possibly could from the NVA to read. I don't think I would have been able to find the help I needed if I accepted what my doctor told me, rather than taking things into my own hands.
"I found a specialist and then started the process that most women with vulvodynia go through, which is the trial and error with the available treatments. There were some treatments that helped me feel better, and eventually I was able to get the all-the-time pain under control. But I was left with very severe vestibular pain at the opening of the vagina. I was not able to have intercourse at all. I was able to be sexually active in other ways—ways that were tolerable when my pain was low—but I wasn't able to have sex for seven years."
Living with Vulvodynia
"I was in a relationship at the time I was diagnosed, but that ended a year into this whole thing. I would say the relationship had problems of its own, but this definitely added a lot of strain to it. I’m now married to someone I met in college, whom I was friends with for about three years during the time when I was in the worst pain. He and I started dating about three years after I was diagnosed. From the time we started dating, our relationship faced issues relating to sex in ways not typical for a 20-year old.
"In 2000 we married, and I still couldn't have sex, so I decided to try the one treatment left—surgery. It was successful for me. Two months after surgery, we were able to have sex for the first time in our relationship. For me, it was the first time in seven years. The difficult thing is that if you have a condition like vulvodynia, where you encounter physical pain associated with sexual activity, your brain holds onto the memory of that pain, even after it is no longer there. You become trained to believe that it's going to hurt when you are sexually active or try to have sex. So women with vulvodynia and other types of female sexual problems experience a lack of desire and also a kind of guarding reflex, where muscles all over the body tense up—particularly the pelvic floor muscles that surround the vaginal opening. So it takes a lot of work to overcome that trained response. Even after going through surgery, which alleviated the physical pain, I had to go through sex therapy and dilator therapy to put a stop to the messages being sent from my brain to my body saying 'this is going to hurt.'
My husband and I now have two girls, and my vulvodynia has been resolved for ten years. But this condition affected our sex life from the very moment we started dating, and it's something we've continually had to work on through the years. It’s not as if the problem just goes away one day and you have a normal sex life. It takes a lot of work."