My story- a long road to recovery.

Hi Ladies!
I've been on the forum for a few weeks and I figured it was my turn to tell my story.

I've had vulvodynia for about 5 years now. It all started when I had tried to have sex. The pain was so unbearable...the only way for me to properly describe it is a sharp pain....like a hot knife made of sand paper was inserted into my vagina. Every time we had tried to have sex I'd have to run to the bathroom and take a warm bath to try to sooth the pain. This pain kept me from fully giving myself to my long term boyfriend. At the time I just thought I was too chicken to have sex, since I knew that sex was supposed to hurt the first time. After we tried with no success I'd cry...every time. I didn't understand why I couldn't just suck up the pain and get the first time over with. After trying about 5 times I started thinking this pain that I was feeling couldn't be normal. If sex had hurt that bad at first I don't think anyone would ever do it. So finally I scheduled an appointment with a local gyno. She checked me and told me there was nothing wrong, that I was healthy down there. I had explained to her that I had been having chronic yeast infections. I mean I had them ALL the time... and they were so painful. She then took a swab of the inside of my vagina, which felt just as painful as me trying to have sex, to test me for bacteria. She called me a few days later saying I had a regular yeast infection, but since I was experiencing pain she gave me a stronger antibiotic. BIG MISTAKE. After a few weeks of this doctors antibiotic I went on to finding another doctor since the other ones treatments never worked. I found a good womens internal specialist in a local hospital. After giving her my records from the last doctor she saw the medication I was prescribed. She explained to me that the antibiotic was for Mensa...a form of staff infection...something that would never have help me with the symptoms I was experiencing. I was so mad.

After all that the internal specialist helped me a lot. She wasn't sure, but she told me she thought I had vulvodynia. When she explained what it was to me it made sense for how I was feeling. I was relieved that I had a diagnosis, but so completely depressed about the entire situation. She put me on topical and oral gabapentin. It didn't really do much for me...so I had to try to find another doctor. So at this point its been 3 years, 2 doctors, and no proper diagnosis. I kept trying, for about a year, to find a new specialist in this area. I couldn't find anyone near me that specialized in vulvodynia. Finally I was suggested by a family member to call another local hospital. Since I had a little luck at one maybe I'll have more in another. So I called and out of pure chance they had a specialist. The hospital had a maternity center and gyno in one. They had 2 specialists who specialize in vulvodynia. I made an appointment right away an began different treatments. She had put me on amitriptyline and another compund cream along with 5% lidocaine cream. Nothing helped much. The amitriptyline helped a little once I got to a higher dose, but for some reason it made me loose about 10 pounds. Before taking the amitriptyline I was 120 pounds...After I was about 105 106 pounds and have continued to stay at that weight. My doctor told me if anything I should've gained weight, but it had an opposite affect on me.

After none of her treatments worked she talked to me about surgery. It was a last resort kind of thing. I had nothing left to do at that point. I could've done pelvic floor therapy, but my doctor told me that in the long run it would probably not help me. Now we were on the search for a proper surgeon. There was one in the hospital that had examined me, but he hadn't done enough surgeries and didn't feel comfortable operating on me. I had done so research online and found a book When Sex Hurts by doctor Andrew Goldstein. After reading it I knew I wanted him to be the one to do it. I brought the book to my current doctor and she said she'd try, but he's a hard guy to get a hold of. Somehow..again by chance...she went to a vulvodynia seminar and doctor Andrew Goldstein was the head speaker. She spoke to him after and he gave me a recommendation! After a few weeks I went in for an examination. He told me that I have PVD... Provoked Vestibuledynia. He said it was very localized and that a full vestibulectomy should fix me right up. So I scheduled the surgery. (I did a lot of research on the topic of surgery and found it was the best option for me.).

I had my surgery on July 6, 2012 at 10 am. Its now been 4 months and I've been feeling minimal pain. I still have a sore spot or two, but nothing like it used to be. Plus I was finally able to have sex! It wasn't pain free, but it will get better over time I'm sure. I'm still not fully healed yet...It take about 8 months to a year to be fully healed from surgery. So was the vestibulectomy a success? So far, yes it has! I have one painful area, but with dilators It should subdue.

If anyone has questions about anything please do ask! Also If anyone want details about the surgery and recovery I'd be happy to tell!

-Jen