Humans of Vulvodynia Society

I recently submitted my story to a new “Humans of Vulvodynia Society” survey from ME + MY V. This blog has some wonderful information, and I am especially interested in reading about other perspectives about vulvodynia. If you have vulvodynia, I encourage you to share your story (you can do so anonymously if you wish). The more stories and the more information that we put out there, the less alone we feel!

It feels impossible to write my story in 500 words. That’s because, for me and for most women with vulvodynia, the story is messy and complicated. There isn’t a quick fix. The first doctor I described my pain to had no idea about vulvodynia… and was dismissive about it. Learning to deal with that was hard. I thought I was crazy. There is this whole WORLD of women who actually enjoy intercourse… and it hurts me. Why me? Did I just need to stretch more? Relax more? Would it be different this time? Nope, still painful. I learned to not trust my body. I learned to dismiss and minimize my pain when explaining it to doctors. I learned that intimacy with my husband would lead to pain. I developed anxiety and PTSD.

All of this, and I have a SUPER patient husband. He never pressured me. He listened to me and understood my pain. We worked through it together. I know I am blessed in this way.
It wasn’t until AFTER I delivered twins (yes, pregnancy check-ups caused a lot of anxiety and pain for me) that a GYN took me seriously and saw through my coping mechanisms. I then embarked on my journey. Creams. Medications. Surgery. Pain. Pelvic floor physical therapy. Mental/emotional therapy. Learning to trust my body and honor my experiences. Less pain. Seeing a specialist and being diagnosed with a Systemic Nickel Allergy (which causes vaginal eczema… who knew?). Completely changing my diet. More pelvic floor PT. More therapy…. And I am pretty much pain-free now. Every now and again intercourse is painful. But my husband and I take each intimate time together in stride. If it is painful, we do something else!

That’s one thing that my journey has taught me. Vaginal intercourse is not the HOLY GRAIL of sex. There are so many ways to be close, intimate, and together. And those ways don’t cause me any pain… double win! I think with the media influence and the general taboo-ness about sex and vaginas, we are setting up women who experience vaginal pain to fail. We are taught that THIS (aka: penis) goes THERE (aka: vagina). But what about when that equation hurts?

Where is the safe space to talk about these things? Where are the OBGYNs who understand vaginal pain and it’s complexity? Where are the OBGYNs who have training in conversations about these very personal topics, such as “my vagina hurts and my marriage is falling apart. I just don’t know what to do because all of my friends say that it will get better… but it never does!” I wish that my first OBGYN trusted my pain. I wish they knew about vulvodyina and could have started me on the path to healing. It would have saved me and my husband years of difficulty.

But, it didn’t happen that way. And I am learning to love my journey, even with the rough parts.