Newly diagnosed and confused over treatment for lichen sclerosus

@ronag, I began with twice weekly and only use more when I have flares. Same with the Premarin. I go to a gynecologist. She was the fourth one while searching for someone who could help me. I see you have more responses and everyone is always willing to tell their story so you have choices of what to do and can discuss with your gynecologist. With all good wishes, @joybringer1.

Hi! I’m totally new here and this post caught my eye. I was diagnosed with LS about 8 years ago. The only treatment I’ve been prescribed is clobetasol 0.5% ointment. When I have a flare (non-stop burning), I do a Yoni steam using a blend of cooling herbs I purchased from an Etsy store after consulting with my bestie, who’s a Midwife/Herbalist/Yoni specialist. It’s very soothing and doesn’t involve having to use a steroid cream or add another pill to my already overloaded regimen. HTH!

I wish I had known about the thinning & bruising earlier. Now I try to use just OTC CETAFIL or CeraVu instead unless itching gets bad.

It varies. What I originally failed to understand about LS is that the Clobetasol does control flare ups and I have occasionally used it more frequently than prescribed because I was suffering pain like burning, itching and swelling. What it did not do was to control the pain was coming from damaged nerves due to the long time I had undiagnosed LS. The sad fact is that nerve damage can’t be cured with Clobetasol or other applications. When I realized that, a light bulb went on in my head. I was under the impression that the Clobetasol would stop the pain when in fact it was only designed to control such things, as itching, swelling and burning. I needed medication for nerve pain. I discussed this with my doctor and he tried me on 40 gram of Amitriptyline and the maximum allowable of pregabalin (Lyrica). It really did the trick for me. Now the nerve pain that I felt in the vulva, including the urethra and clitoris has just about disappeared. So I am fortunate to be able to tolerate these drugs and I realize not everyone can, but for those who are able to, like myself, it has been lifesaving.

I'm in the process of searching for a vulvar specialist. That's an amazing suggestion. Thank you. I've also found this website:
https://www.lssupport.net/
where I saw an instructional video of how to apply the clobetasol. The physician mentioned 2-3 months of treatment is not uncommon. She also recommended sitting in a warm bath for 15/20 minutes prior to applying the ointment and thoroughly rubbing it in for about 90 seconds per area. I'm trying to follow her recommendations and most of the area is finally less red, less inflamed.
Anyone with other suggestions?

I found using clobetasol ointment instead of cream worked better. There is no alcohol in the ointment

I also have been diagnosed with Lichen Sclerosus recently after many visits to the doctor (GP) who did not recognize it. Finally I got in with a gnynocologist and she was wonderful, diagnosed it right away. Thank heaven! The itching was literally driving me crazy!
She told me it is an autoimmune disease, not curable but treatable. Untreated it can lead to cancer. It requires lifelong treatment.
This is my treatment: Clobetasol 17-propionate ointment 0.05%. Apply 1/2 fingertip to non-hair bearing areas of the vulva once daily for four weeks, then apply twice per week.
Within a few days the itching was gone, oh my, what a relief! I am on my second week after starting it and I apply it at night after cleansing the area.
Although a steroid the results far out way the risks taken in small doses.
I hope this helps. I wish you all the best! I feel sane again!

On this note, I'm newly diagnosed myself and completely lost. I have 0.1 steroid ointment once a day for 2 weeks and then drop it down to twice a week. The architecture changes to my vulva already happened. I am devastated and don't know what specialist to help with my condition.

@ma31302 Welcome to Mayo Clinic Connect. This is a very caring and informative group so I’m glad you found it! I’m so sorry about the lichen sclerosis and the changes it has caused you. What type doctor is helping you? Most members would recommend a good gynecologist. They can probably point you toward a specialist who could help you.
Is the steroid ointment helping you with other symptoms?

Hi there
I’m 77 and use the steroid cream twice weekly but don’t worry as many doctors have different ideas. The doctor probably wants to get the condition under control quickly. I’m sure it will be fine. My genital architecture looks unusual but I’m widowed so it doesn’t matter. Keeping the itching and soreness is more important. Best wishes Mary