My Story. Part 3. Trial and Error.

Lidocaine jelly.

That’s the first thing I tried. I was told to lather it all over my vulva and vagina and wait 15-30 minutes before intercourse for everything to go numb. It seemed so simple. I was shocked that I hadn’t thought of something like that before.

The way my vulvodynia was described to me is that my body had a cluster of over-active nerves that were pain receptors. This cluster was located on my vulva. My GYN did the dreaded “Q-tip” test. If you have vaginal pain, you know what I’m talking about. She gently touched different spots on my vulva until I recoiled in pain. I also learned that there are women in the world who have generalized vulvodynia (meaning that the pain is all over their vulva) and women who have constant vulvodynia (which means that they are in pain 24/7, not just when the area is provoked). I had no idea. 

I had hope learning that there were multiple treatment options: medication, surgery, and physical therapy.

Unfortunately for me, the lidocaine BURNED. Minutes after applying, I was in tears trying everything to get it off of me. If my memory serves me correctly, I didn’t try it again.

I reached back out to my GYN who then moved me up to a topical cream, Gabapentin. Gabapentin is a treatment for neuropathic pain. Again… the cream burned. I tried to muscle through for a couple of days, but I just couldn’t take it. It wasn’t making my symptoms better… it was making them worse.

At my next appointment, my GYN suggested an oral medication. She wanted to put me on a tricyclic medication that would treat pain. However, we remembered that I had already tried a tricyclic (Doxepin) for chronic itchiness and it made me too sleepy to function. Even cutting the dose in half made me so sleepy that my husband had to stay home from work because I wasn’t getting out of bed. Needless to say, we skipped this step when it came to trying a new tricyclic for my vulvodynia pain.

After determining the oral medication would not work for me, my GYN recommended surgery. A vestibulectomy. Basically what this procedure is… is a skin graph. They remove the clustered patch of over-active nerves and graph in some skin from another part of your vulva. I had previously had a gum graph for receding gums, so I had a pretty clear idea of what was going to go down. And I had previously vaginally delivered twins, so I knew that my body would recover from the vestibulectomy fairly well.

I was nervous, don’t get me wrong. But mostly I was excited! I was going to have this surgery and take time to heal and then everything would better. I would be healed. AJ and I wouldn’t have sexual conflict anymore. We would have overcome these emotional barriers and hurdles we had. And all of my pain would be in the past.

Unfortunately, that isn’t how my story ended.

Granted, there are many women who are pain-free once they have the vestibulectomy. So it works. Don’t think I am trying to discredit this surgery. It is an amazing piece of science and I am glad it exists!

But it didn’t work for me.

I had the vestibulectomy in March of 2016. My vagina surgery, as I called it regularly. The recovery was pretty rough, to be honest. I was in a lot of pain. Walking hurt. Peeing hurt. Sitting hurt. But I had hope. And that made everything a little easier.

I went in for my post-surgery appointment and was told everything looked fine. My surgeon mentioned that the skin can sometimes heal too tight and that we would need to do some gentle stretching at home in order to avoid that problem. Either I would use my thumb and do some stretching or AJ would help. A few weeks later, AJ and I were cleared to try intercourse. It was such a weird feeling- so much apprehension, excitement, and hesitation. I am glad that we took things slow because it still hurt. It still hurt. Why? Why did it still hurt?

I went in to the surgeon again and asked what was wrong. She said that anatomically, everything looked fine. There was nothing more for her to do. She suggested that I try physical therapy. The one pelvic floor physical therapist she knew was, unfortunately, out of network with my insurance… I went home dejected but determined to find someone who could help.