Autoimmune Lichen sclerosus

Hi Karen and all....

I did find the article here - I think there was  an extra digit at the end of the original link.

https://patient.info/health/vulval-problems-leaflet/features/itchy-vagina-lichen-sclerosus

I identified with almost everything that was written in there, which for me at least was very encouraging. I have relied on Dermovate through the years with LS. My history ls is that I developed terrible sores, ulcers, itching and white bits about 15 years ago in my mid fifties, menopause time.  It was undiagnosed for a while, doctor treating for thrush, until she finally thought it might be LS and sent me to vulva clinic.  Two doctors - one a gynae and the other a dermatologist - examined me with huge sympathy for the itching, pain and soreness and because I could barely walk. They put me on Dermovate, I think it was twice a day for a few days and then once a day for several weeks, reducing then to twice a week - I cant remember now the exact times. Also no soap or anything with perfume, anywhere near the area, I have been using aquaeous cream, which for me seems to have worked, and I still use. I also occasionally use coconut oil, and have tried various other unguents mentioned on the website. I have also continued to use a small amount of oestrogen gel, which I am now beginning to wonder might have also been a help to keeping flares away.

So.. miraculously the terrible flare, the ulcers, soreness etc. did disappear with Dermovate.  But during all that time, I was so relieved to have got rid of the flare, the pain and discomfort, I had'nt noticed that my architecture had changed - and actually continued to change, till I seem to have lost my clitorus under the hood, and the labia minora is also disappearing.  I have not been able to face actually looking at it myself, but they have photoed it at the clinic, and kept record in order to be able to  compare in due course.  The advice was that I should continue with Dermovate twice a week, and I've had no flares, apart from slight cuts and soreness from time to time, I assume because of Dermovate. But the structural architecture still silently seems to be taking its own path - which is depressing. So I somehow ignore it - made easier as I am not in a relationship, as my partner has very sadly died. I'm not sure what I would be able to do if by some remote chance I was to find another relationship.

Sorry.... this has been a long post - and I have'nt been on the site for a very long time.  But having read the highlighted article, I felt my experince might be useful..... But the fact that my structure still seems to be changing, is disturbing.

yes, I found it too....

I got in! Some of the research is def. old school and I hope she updates it soon, if people see this first without checking the publication date, they are going to be misinformed!