I have Paget's Disease of the Vulva and have commented on this forum many times. I have had one surgery and the last occurence the Dr. suggested
Imiquimod. They were not sure that I could tolerate it because of the burning but I decided it could not be much worse than what I was going through with the burning and itching that I was experiencing on a daily basis. Much to my surprise, the Imiquimod helped and I have less burning and itching than I had before.

Please let me know if I can help in any way. You are correct, there is not a lot of information or support for this disease.

Susan