Lichen Sclerosus: Any other women dealing with this disease?

Also wondering about potluck swimming pools...

I am in southern California, San Fernando Valley, outside of LA.
The more I read comments I wonder if what I have is really LS or something else.
It's worrying to read that stress and even diet affects this. How can one not be stressed ? I am so uncomfortable all the time when I am seated , so I stand a lot , even when eating. It's surprising to me as I read more about LS that it's not so uncommon and why hasn't there been more research on medications . Steriods are a double edged sword.

Mayo Clinic and Vanderbilt both prescribed Tacrolimus cream for mine. I use it every day. I used to use clobetasol propionate, but it didn’t help me much. I still struggle with flares. I have to be careful with some clothes, because many of them trigger flares. My 17 year old niece just got diagnosed with lichen sclerosus, so it must be genetic.

hi. The side effects sound awful, potentially. I am doing fine with daily estrace cream, but ask your doctor..m

Would you please expand on what you mean about being careful with some clothes. I was wondering myself if the spandex and other synthetic fabrics in underware and pj's could be a negative . I try to buy 100% cotton pj's but not always easy to find . Sorry to hear about your young niece having to deal with this awful condition too.

I walk 3-6 miles daily outside. In all seasons I have trouble wearing anything that fits close to my skin or of wool. When working out in winter I was wearing lululemon leggings layer 1, heat holder leggings layer 2 and Nike leggings layer 3 during freezing temperatures and my lichen sclerosis flared up big time. Then I started wearing loose leggings without any wool fibers and it didn’t flare up as intensely, unless I sweat. I then started wearing cotton loose panties under my leggings and it also helped some. Triggers are definitely tight clothing, sweating and fibers of pants. They always cause major lichen sclerosis flares.

@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

The ones I wear with cotton underwear are the Nike Dri-FIT Fast $75 Product Details
80% polyester/20% spandex
Mid-rise waistband 7/8 length Machine wash. They run large in my opinion. They aren’t fantastic, but they work for me. Best wishes to you. Health problems sure have a way of interfering with our lives and happiness.

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?

My Dermatologist verified what I thought was LS and I was correct. I have had it for quite a number of years and complained to my ARPN that I had issues and she gave me things for yeast infections but nothing really helped. So I self diagnosed after reading up on what my symptoms were. I felt good to have my Dermatologist say , yes that's what you have and it had destroyed the area pretty bad, I won't go into detail. I use Clobetasol and have for quite a while. Nothing else seems to help . I have used Bag Balm which my Doctor said to try off and on as well. I wish I could say this was not life long but I do not believe there is a cure and managing it early may stop it from progressing as mine has. I read up on Pimecrolimus cream and it is used for people with Eczema so that is interesting. I will check my my Dermatologist in a few months when I have my next appt. and see if there is anything new. Take care, thanks for your post