Just dx and given a estrogen cream

I have had fantastic results with something called "Protopic". I inquired with a dermatologist. She recommended Protopic and what do you know. The first thing that actually worked!! It might be called something else in Europe.

It's not a steroid so it can be used long term. It helps with itching and stopping the shrivelling which makes the skin look like lichen! My vulva is softer and fuller. Once or twice a day the first two weeks. Then after you shower or once eveey other day. Im actually fine now with applying it once a week. You will experiment to see how minimal you can go.

In conjunction with Protopic I use an antihistamine....it really helps with that itch. It takes about a week for protopic to work but its a the best thing Ive used out of all these other creams or ointmemts! Take the antihistamine right away even if you sont have protopic...and if you dont need an antihistamine during the day...take it around 5 or 6pm or around the last meal of the day. Especially if your itching is worse at night.

I have also found earing salty foods like potato chips or store popcorn triggers my itching within the hour after eating a lot of sodium!!!! Take an antihistamine right after you eat!!

Hi Jlb, The more I read these posts the more I appreciate the disparity of knowledge and treatment even among specialists. I can only urge you to consult the resources for this thread on treatment protocols, connect also with the association for Lichen Slcerosis, and hit Google Scholar for additional information and recent and reliable scientific research. The most reassuring info I have found was in a webinar on LS given by Dr. Andrew Goldstein that you can find on utube which is very helpful.The main protocol now for LS is topical steroid and the implications of this treatment and the various strengths of topical steroids used to treat LS are very, very important. Do your homework and don't be afraid to ask your gyno for more information. I was one of those who was terrified of using this medication but everything I have read of the scientific literature indicates that topical steroids are, at this point, the best hope for this disfiguring disease. It's not ideal, but the research is there to read and the data is very pursuasive so please do not delay in reading it and educate yourself. I finally got serious about the topical steroids when I learned that even when you are asymptomatic and the skin seemingly calm and comfortable the disease can and will progress. Goldstein and other recent research is showing that there appears to be a reduced risk of vulvular cancer among those who are compliant with this protocol. You will also find some great stuff on all the threads here related to LS and a wonderful community to talk to. Good luck!

 I am also interested in topical tacrolimus which Kubie has just mentioned in her response to you (re: Protopic) and but while it is fair to say that it is not a steroid, this is necessarily a benign drug. A fairly recent study completed in 2006 by Hengge, Krause et al. in the British Journal of Dermatology showed pretty good results for tacrolimus, but they also acknowledge that it is very early days in using topical tacrolimus and there are a number of health issues to be considered in using this drug as they, themselves, admit. Check out the study, you can find it on line along with several others. 

I use estrogen  in combo with Progesterone.  It is part of what helps me. Next to steroid ointment, diet and baking soda baths and rinses.  Cut out sugar to start with, it really makes a difference.

Hanny - Could you please say a little more about progesterone vs estrogen cream and your own reasons for using it? Are you using oral progesterone or topical? I'm using estrogen cream but again, amounts and frequency are something of a mystery to me. I'm using Betnovate but now waiting to see another dermatologist as the one I was seeing was not much help and the disease galloped along under her care.The itching abated as soon as I started using Betnovate with some real frequency and the baking soda rinses  helped calm the skin.