Someone else with the same problem

One of the most frustrating things about this is that I don't know anyone else with DIV. Saw another post today of someone with the same issue here http://universal-drugs.net/vulvar-disorders/has-anyone-been-diagnosed-with-desquamative-inflammatory-vaginitis-div-or-know-someone-that-has/

I feel really bad for her, but at least she has a diagnosis now so she can work towards a fix. That was the hardest part for me in the first several months is that no one knew what was wrong with me. I had never had anything wrong with me that wasn't easily identifiable or fixable so it was really scary. I had self diagnosed (gotta love google) with all kinds of horrible things. DIV isn't ideal as there is no cure or cause and only a hope for diagnosis, but at least I now have a name which is half the battle.