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 rough, etc. But at the end of the year I finally got in to see a vulvodynia specialist and he diagnosed me with a Nickel Allergy and said that could be why the medications burn so badly and why burning is a huge symptom of mine after intercourse. I was put on a low-nickel diet and got in to see a different, much better, pelvic floor PT.
This year I have seen major improvements. My skin burns and itches WAY less. My PT and I have been working on relaxation and mindfulness. I now have 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. And hopefully, within the next few weeks I will get in to see another specialist who can determine if I have a granuloma that is causing a lot of pain (my PT found what she thinks is a granuloma last week). And if it is a granuloma, then it can get removed and hopefully will be my last hurdle to jump through! (Dec 2017)