I wanted to do a QUICK elevator pitch of my medical journey with vulvodynia, so that there is context when you read the other posts about what has helped/what hasn’t. I will keep updating this post throughout the course of this blog. Thanks!
I was diagnosed in 2015 (after I had my kids) when I finally had a GYN acknowledge what I was saying. Within that meeting I had some lidocane gel to try. That didn’t work for me because EVERYTHING burned. It was unbearable. All of the other creams she had me try burned as well (gabapentin cream and a hydrocortisone). Then, I tried oral medication but it made me too sleepy and I wasn’t functioning well day-to-day (I can’t remember what this one was called).
So after trying all of these, in 2016 I had the surgery. I had a vestibulectomy where they removed a patch of concentrated, overactive nerves and then did a skin graft to smooth the skin over. After I was cleared by my GYN surgeon, who said everything looked fine, my hubby and I tried intercourse and it was still incredibly painful. Possibly even more-so. That year was really depressing for me, because we had gotten our hopes up SO much.
2016 was my year of failure in regards to healing! The surgery didn’t work. The pelvic floor PT I found actually DIDN’T treat vaginal pain, they just said they did to keep my business, therapy was long road, etc. I promptly left that practice! At the end of that year I got in to see a vulvodynia specialist who diagnosed me with a Systemic Nickel Allergy, though doing everything I could to minimize exposure to the allergen didn’t help much (and instead just added HEAPS of stress onto my plate).
I have seen major improvements over the past few years, though. My skin burns and itches way less. My PT and I have been working on relaxation and mindfulness. I’ve had many PT appointments with internal exams that are pain-free, though my most recent GYN appointment with the speculum was still very painful. I have been put on anxiety medication and have seen major improvements in how I can release tension and not hold it in my pelvic floor. I’ve been in therapy for two years and love the progress I am making with my mental and emotional health.
Though, I still have pain. I still have burning and tightness. I still have a lot to work through. But I feel better now knowing that I am on the right track. I have stopped looking for the ONE cream, ONE surgery, ONE medication, ONE diet, etc that would CURE me once and for all. Instead, I am taking the lifelong approach. Vulvodynia may be my companion until the day I die. And I am learning to make peace with that.
[Updated June 2019]