Re: first acute episode

pjp, I am just coming to terms with this too. Was diagnosed this past week. I have never been through anything like this and am used to being hearty and "in control". Torture is the only way to explain it, so I understand how you feel. I think back to the few years I started itching off and on for no reason down there ( front and back) and just chalked it up to a mild yeast infection or irritation that went away... or getting older and hormone changes ( I'm in my mid 40s.) Now, after this first HUGE flare up a few weeks ago,and a visit to my gyno who said she is sure this is what it is, I have my biopsy with a dermo to confirm this week. I'm completely confused as to how to live with this without steroid therapy for the rest of my life, which has it's own side effects that are kinda scary too. I have my figures crossed. I'll keep checking in and reading other responses, because I too am looking for any information, maybe just emotional support from peole who understand what this is like. I have 4 kids and a husband that travels for his work, so I have to be able to function. This stuff has me exausted, sick, on edge with the itch and swelling. I even have blisters in areas that have already scarred! In burning pain constantly and look TOTALLY different down there in matter of three weeks. Never heard of this until 5 days ago. Haven't got past the shock yet... Tweet