Hello,
I am new to this website and have been trying to get a proper diagnosis for my condition for 1 1/2 years. I am 63 years old, very active and have had a very normal life. About June of last year I began having redness and itching and lots of pain. I bought Monostat and every other product on the market, never having had used them before but daughters and friends recommended them: but nothing worked. I went to my primary doctor in August and was given antibiotics and had numerous blood tests. They all turned out negative for HPV, warts, herpes, etc. I came back in a month as my condition was worse and was told I was having an allergic reaction to soap, fragrances, etc. My Fall trip to Arizoona was in October. I was still in bad shape so I went to my doctor at Mayos and he treated me for yeast, seven days of fluoncase, it seemed better for about a week, then back. Home I went and back to my gynocologist and she started giving me creams, yeast pills, anything. Noone biopsied me and every cream I was given made it redder and hurt more. In January I went back to AZ for the winter months, saw my Mayo doctor again and he sent me to a gynocologist at Mayos and she did not do a biopsy, three months with her and no biopsy, even though it had been recommended by my internist! Came back home in May, still in terrible shape, and went to a dermatologist who finally did a biopsy and it came back VIN II.
I've had five surgical procedures since May and my last one consisted of dime size pieces from right, left and pernium area. Each time I have at least ten stitches and am then given three weeks to recover and off I go for more surgery. All areas have now progressed to VIN III and we have had no negative edges, ever. After the shock of these last biopsies, I got my head on straight and am going to try to get into M.D. Anderson for their opinion. From all I read, noone seems to get better until they have a vulvectomy. As frightening as that is, I am not as young as some of you and I need for this to be done!
I will enjoy being connected with women going through this, as I know noone nor have I ever heard of this weird condition. We must keep upbeat and ready to go forward, all of us. If anyone has been treated at MD Anderson for this condition, I would love to hear from you. For the others, your treatment and positive results would be appreciated. We are fortunate that this is external, and we will be cured if we can get the proper treatment, of this I am sure.