His and Her Health

I have been having vulvar problems. Pain and inflammation of the vulva. Biospies are showing acute and chronic inflammation. THe inflammation is on the posterior of the vulva toward the rectum (considered the perineum). Biopsy (Vulvar) showed no bullous disease. Biopsy didn't show a skin disease. Just inflammation. I have been to dermatology and GYN. They are not sure if it is a lichen disease since the biopsy is not reading that. It kind of looks like that, but they are not sure.
I have some color changes on my vulva. Hypopigmentation, dilated blood vessels and atrophy. The topical steriods made the vulva skin thin even more and caused hypopigmentation and atrophy. Clobetasol and Diprolene have been tried. Made the vulva even worse. I have severe burning, more than itching. However it does itch sometime.
All cultures are negative for yeast and bacteria. Microscope shows sloughing of skin cells. Blood work is normal. No diabetes or thyroid disease. ANA test negative. Doctor started me on oral steriods because no improvement from topical steriods.
Medrol packs are now being used. Doctor is recommending surgery. Where they pull the skin from the vagina and excise the area for inflammation and recover the perineum with the skin from the vagina. I think I need a second opinion before I do something like this. My doctor really doesn't know what is wrong with me besides that I have inflammation. He says that doctors really don't know about what causes these vulva disorders. My mother has a history of scerloderma. Could I have possibly have an autoimmune disease that is doing this to me? I had three vulvar biospies and they all have came back with this acute and chronic inflammation. They have never came back with actually showing a skin disease. I don't know where the inflammation is coming from. I'm not sure what kind of doctor that I need. I have been to John Hopkins and Uiversity of Virginia and they don't know what is wrong with me. Please help.

I think it is a terrible idea to have surgery without a diagnosis. Please get a second opinion from a vulvar specialist.

Hi. I can tell from the timestamp that this forum is very outdated but I am having the same problems as you have described. Since so much time has passed, if you still check this or get messages when you get a reply, I was hoping you might be able to give me a little advice on what to do next. Did you ever find a cause and get it corrected? Did you go through with the surgery?

Thanks!

The forum is working its the thread that is outdated. The original poster might have put her email address in her profile(the letter with the question mark on it above her post))