Lichen Sclerosus: Any other women dealing with this disease?

@kimroepke, I agree about certain fibers in clothing causing flares. I never could wear wool next to my body and would like to know where you found loose leggings without wool. When I am at home I wear men's boxer shorts, size medium (way too big for me), but it helps not to have anything tight in that area and a skirt; however during cold weather when I go somewhere, I have to wear pants and usually wear silk long underwear as well as cotton panties. As soon as I return home, I get back into a skirt with my men's underwear. Hooray for you walking daily! I do my video exercises from the Y. I also have a compounded cream (Lidocaine 8% in Aquaphor) that I use to numb the area. LS is just so miserable. I was told many years ago that LS is one of those "no cause, no cure" diseases. I was told the same with PMR. It would be wonderful if someone did research on LS and could come up with a cure. I think if more men had it, there would be research. But, by now there should be a cure for cancer and that isn't happening. I guess we just have to be grateful for each day we have no matter how we feel. With all good wishes, @joybringer1

It definitely goes into remission at times, but unfortunately it comes back too often with me. Mine even went away for a year one time. I’m under a lot of stress right now, which makes it hard to go into remission. Good luck with yours. Also, tacrolimus stinging got to where it doesn’t even bother me.

I have not seen your earlier posts . Can you tell me what the laser accomplished ?
Thank you

I'll try the mens underwear; I have a drawer full of panties I can't wear, and keep trying to find some I can use. The most comfortable garment I have is a soft, cotton knit pair of lounge pants, very full in the legs and crotch . I am trying to find more of this style. The problem is newer ones, unlike this old pair, have big, lumpy seams, uncomforable because of the sharp, scratchy thread and are too tight. I can't wear tight fitting anything. Am trying to find skirts that aren't too short or youthful . Does the druggist determine the formula for the compounded lidocaine or the dermatologist? Can you use it daily, long term ? I looked at OTC 4% lidocaine product and the directions said not to use on irritated or swollen skin so I didn't get it. But I need to find something for this constant discomfort. I agree about need for research and more effective solutions. I refer to rxlist.com on the pros and cons of drugs; too often the negatives push me into a limbo stage of doing nothing, which is very not good.

Also wondering about potluck swimming pools...

@alju, My GYN prescribes the compounded cream. We have tried so many different variations of the cream, but thus far this one works the best. I use it all the time. I can apply every 3 hours. To me, it is better than taking pain pills so I continue with this. Yes, my skin is irritated, but I get some relief from the compounded RX. My medical insurance does not cover compounded drugs and I pay for this each time. It takes my pharmacy 3 days to prepare the compounded mixture so I have to watch the remaining supply and I am sure to get the RX when needed. I can find skirts that are long enough because I am short. It is great in summer when I can wear my men's underwear under a skirt and no one is the wiser. With all good wishes, @joybringer1

I have been struggling with LS for two years. My OBGN prescribed clobetesol but it hasn't helped that much. When I saw my demalogist she tried clobetsol for one week and the next week Tacrolimus ointment but Tacrolimus stung. So now I am doing one week of clobetesol and the next week with Pimecrolimus cream. I'm hoping this will work (fingers crossed).
My understanding is that this will never go away. Is that correct? Can it go into remission?

I have has LS for several years. I have tried several products but I use Clobetasol twice a week and when I have a flair up I use it until it gets under control.
If I use certain toilet paper it will cause a flair up. I mentioned it to my Gynecologist and she said that some toilet paper has formaldehyde in it. I believe that to be true because if I am out during the day and I use the restroom I will have a flair up. So keep that in mind when you have a bad day.