National Vulvodynia Association

I was a typical 24-year old living life in New York City when out of nowhere I started having burning and pain in my vulvar region. I was so scared and confused by what was happening to my body. I started going to countless doctors, some of whom were gynecologists. Many said it was all in my head, nothing was wrong, or that they just didn’t have a solution. I was given medication for yeast infections, steroid creams and antihistamines, but nothing provided relief. Finally, I went to a vulvar pain support group. Although it was disheartening to hear some of the women’s stories, it was ultimately a great decision, because I got the names of two vulvar pain specialists in New York City, who provided treatments that reduced my pain significantly.

I went to one of the specialists and was diagnosed with vulvodynia and hypertonic (tight) pelvic floor muscles. My doctor explained that when the pelvic floor muscles get very tight, they can trigger a burning sensation. She prescribed an antidepressant and anticonvulsant for pain and gave me valium suppositories to help relax the pelvic floor muscles.

I also started seeing a women’s health physical therapist specializing in pelvic pain. She gave me exercises to stretch my pelvic floor muscles and told me to order dilators to stretch the muscles and help them relax. I still had a moderate amount of burning pain, but I did not give up. My doctor injected some pelvic floor muscles with Botox to help relax them and that was a godsend! Botox essentially ‘paralyzed’ my tight muscles, which were then able to relax. My pain went from being a 5 (out of 10) to a 1. I could have sex without pain again and didn’t have the constant itching and burning. I finally felt normal! The best part about Botox is that it lasts three to six months. Additionally, I use the dilators to further stretch the muscles, which helps the Botox last even longer. I do realize, however, that Botox injections are not the answer for everyone, and in the end, it was not the medication or botox injections that completely reduced my vulvar pain. It was finding a skilled therapist who specializes in CBT (cognitive behavioral therapy). Through therapy, I learned to recognize negative thought patterns and utilize strategies to reduce stress in my life. I learned that when my body is stressed, I react by tensing my muscles (including the pelvic floor) and this in turn causes me to have pain. Finding ways to cope with my stress and anxiety is what ultimately rid me of pain. While I am currently pain free, I continue to maintain my skills so that it stays that way. For me, this includes going to therapy, taking anti-depressants, and doing stress management techniques.

The key takeaway from my experience is that there are treatments for vulvodynia that are now more available, because many gynecologists, physical therapists, and other providers finally recognize that it is a common condition. I encourage everyone with vulvar or pelvic pain to do research and be persistent until they find a treatment that works. While therapy might not be the magic cure for everyone, I encourage anyone with vulvar or pelvic pain to explore all options and know that you will find relief. You can reach out to NVA to connect with a support contact in your area, who may have valuable information on local resources. Whether you are in a relationship, dating someone or single, do not be embarrassed that you have vulvodynia. It can help a lot to discuss your pain with other women and to be optimistic that you will find relief. Vulvodynia is more common than many people realize and you’ll be surprised to learn that women u know have had a similar experience.