Hi chrissyg,
I have LS, was diagnosed by biopsy about 8 years ago aged 45. I was lucky that my GP recognised my symptoms of unbearable itching and vulval skin whitening immediately, and referred me to the Women's Clinic at the local hospital. I was horrified at first, having read so many horror stories on the web, but I used Dermovate ointment on a regular basis, initially on a weekly and then fortnightly basis and it really helped a lot.
3 years ago I was diagnosed with Breast Cancer and I had to take high dose steroids before every chemo treatment - although the whole experience was awful, the steroids appear to have calmed the whole LS thing down enormously, I haven't had to use Dermovate since then. I'm not suggesting you try and get your hands on systemic steroids, but just that the low dose of steroids in Dermovate can really help and are not something to be scared of. I think it depends a lot on how quickly you get diagnosed - I was lucky, I was diagnosed early enough that very little permanent damage had been done. Hopefully the team you've got lined up will sort you out with a good regime for managing it. It really doesn't have to be a big deal as long as you find some kind of regular treatment that works for you.
