Re: Which treatment works? / VV

[Guest guest]

Bruna,

I just jumped in mid-posts so I haven't read all of the responses, but I did see your post about recently having been diagnosed with VV. I have had VV for 7 years, and I have tried a number of treatments, although never the low oxalate diet-- my doctor felt that no studies have shown that it is effective, although anecdotally a lot of women have been helped by it. I think there is some connection with yeast, but I'm not sure. I've never had yeast infections.

For me, I went to a number of general gyns until one referred me to a specialist for vulvar disorders, and that helped tremendously. Finding a doctor who is knowledgeable about these disorders and has experience in treating them should be a big priority right now, since they can be difficult to treat. If you're not sure where to look, email this listserv with your location-- people will often reply with their own recommendations.

I tried a number of treatments-- Estrace cream, hydrocortizone cream, Elavil by mouth and Elavil cream compunded with baclofen, PT.... the list goes on. I never tried capsacin cream, although I have read about it. For me, after 7 years of dealing with VV which was only painful when I had intercourse or inserted tampons, I finally chose to have surgery-- a partial vestibulectomy. It was something I thought I would never do-- I am terrfied of medical procedures, especially vaginal ones! -- but I was at the point where I just became ready. Women who have localized VV are the best candidates-- I'm not sure how effective it is if there are other issues going on, which a lot of women seem to have. I was initially against surgery, but I decided to have it since the odds were great that it would work. 6 months later-- I'm very happy to say that it did!!!! My husband and I are able to have sex comfortably, and I'm actually starting to learn to enjoy it again! And we are talking about trying to get pregnant.

I am certainly not advocating surgery for everyone-- I would try the other, less invasive treatments first. But for me, it worked, and I am SO happy that I chose to have it done. For a long time, I was convinced that I would never have sex again or be able to get pregnant through intercourse. That was very hard for me, especially because I was 23 when I was diagnosed. But there IS hope, and there are treatments and good doctors out there!!! I know it's difficult to see the " light at the end of the tunnel " , but know that you have many options for treatment ahead of you as you start to figure out what might work for you.

This listserv is a great resource for information and support. I felt so alone and ashamed when I was diagnosed, but I saw through reading the listserv how many other women have these issues. I would also use the internet to explore the various treatments for VV, although you do have to be careful what you read. Doing some research might help you come up with some questions about treatment that you can ask your doctor.

Good luck! I wish you all the best.

Amy