Specialist Visit

I apologize for the lack of new posts, but I wanted to wait until after this past visit to the specialist. Like I said, my mom had to work today, so my dad came to school and we left for Philly together this morning. I want to pack a lot of information into this post, so I'm going to rush through the exam. For the first time, I didn't have tears in my eyes when my specialist examined me. It was still very painful, but nothing like the last visit. I usually have difficulty walking and sitting after the exam, but today I was fine.

During the discussion with my specialist, a lot of information was brought up which I'm going to do my best to relate right now. He discussed in detail all the possible treatments available for VVS. The first step is to to try applying the steroid cream in hopes that the chronic inflammation will decrease. After that attempt, you try applying the Estrace cream. If that doesn't work, you move on to taking a pain medication, which is usually an anti-depressant (Elavil in my case.) Then, if your body cannot handle the anti-depressant, you use a cream form of the drug along with an Estace cream. This is how far I've gotten. Now I was told all the other possible treatments and was given the choice of what I would like to start. I'm going to put all my options in list form below in order to make it easier to read.

-Series of steroid shots- The theory is that the steroid cream isn't penetrating deep enough into the vulva to make a difference, but shots can reach deeper places and hopefully decrease the inflammation. There are several problems with this treatment. You must get a series of steroid shots ONCE a week for TWELVE weeks (very time consuming) AND these are long needles going into a place that I still can't tolerate a q-tip touching.

-More pain medication- There is also the option of taking Neurontin which is an anti-seizure drug. It wouldn't affect my mood, but it still has the side effects of drowsiness and dizziness. I had a lot of problems on Elavil and was so limited in what I could do and wouldn't want that to happen again.

-Pelvic Floor Therapy (Biofeedback)- This is the physical therapy route that deals with the pelvic floor muscles. Apparently upon examination, my muscles are extremely tight and tense. I can feel myself tightening up right before an exam because I know the pain is coming. I was given a list of PFT therapists, and one is located right in Hamilton Square by school.

-Surgery- This is what I talked about last post- it's called a vestibulectomy and involves cutting out the bottom half of your vulva, folding new skin over the area and stitching the vagina back up. This is what my friend has recently had, and I'm curious to see if she is cured. I would be in a lot of pain the first week, and not be able to play tennis for 6-7 weeks. Apparently surgery cures 70% of those who attempt it, 20% of women improve, and 10% stay the same.

At this point, I opted to go the physical therapy route. I am going to remain on the Estrace and Elavil cream because they seem to be slowly working. My estrogen levels have now returned back to normal. I am trying to get into therapy before I leave for Africa on May 20th.

Other interesting information:

Although there has been a correlation between VVS and birth control- birth control isn't believed to cause the condition. Extensive research has been done that shows it is a genetic disease and that I was born with more nerve endings and chronic inflammation and that a small event triggered these problems to arise.    

For the first time, I came back from the specialist hopeful. I am excited for therapy and also the knowledge that I have other options to fall back on if it's not successful. I want to thank my dad for accompanying me today- it meant a lot. And I also don't want to forget to thank my mom who has repeatedly come with me. Again, I don't know what I would do without such a strong support system. 

I am too tired to think if I have left out any other information. It was a very informative day and I hope some of the things I wrote about today will help at least one other person. I thank all those who continually check this blog- it means the world to me. Please continue to read and please comment! (you are welcome to be anonymous) I want this to be more of a forum for people to share their own experiences, exchange medical information, or even just a place to vent. And it's important to note that you don't have to have VVS to comment. Feel free to talk about any part of your day that was depressing or stressful. Trust me, you'll feel much better after talking/writing about it. Good night all!