Lichen sclerosis

Not my ! Sorry.

Hadn’t looked at this thread for a long time and realize it hasn’t been active. Just wondering how everyone’s getting on? I’m having an LS flare up at the moment. I’m prescribed Vagefem for itching and burning, but find the leaking of it from my vagina irritates the LS patch. Can’t win!

Forgot to ask…..does anyone use coconut oil on LS area? And is it helpful?

I had this itching/burning condition for such a long time and the first health nurse I saw was useless and gave me Canestan, no use at all.
After that I saw a GP who prescribed Elocon Mometasone furoate and that has been like a miracle cure. I couldn’t believe how quickly it worked and wished I had seen a good GP earlier as I had itching to a frenzy driving me mad.

I had cancer from LS this year I have had two ops it was stage 1 and now declared fit and well (so far) will be tested every 4 months for next 5 years
I had never heard of it before
My doctor was unsure what I had as it wasn’t showing as expected but bless her she was big enough to say she wasn’t sure and sent me on a two week biopsy journey

I have been very open with friends and now have two of them under their gps for it

BlueBelle I hope the cancer caused by the LS stays well away from you.

I suffered many years with this little known condition and finally saw a GP 4 years ago, who diagnosed eczema, since then had another diagnosis as suspected LS, leading to a hospital appointment 3 weeks ago leaving me with a prescription of creams and potions to use in defence - Dermovate, Dactacort and Epimax.

Like Bluebell, I'm spreading the word about this little known, potentially dangerous condition and have asked my three girls that if they ever get an itch in the vulva area that doesn't resolve quickly, then go to your doctor.

I’ve suffered for 10 years from something that was diagnosed as LS (not offered a biopsy by dermatologist). It was a nightmare and support and interest from the medical profession was as described by posters further up the thread. During COVID I was referred back to the GP as the problem is not a priority. I’m interested to see someone mentioning Gladskin. Life has been bearable again by using their eczema gel twice a day and the only time I’ve troubled a (very disinterested) GP was when I was using a tube of gel that was close to the use by date. Cracked open a new tube and all was ok again. It’s not cheap but as your life is very curtailed when you are suffering anyway, I’d rather live simply than with constant soreness.