Lichen Sclerosus: Any other women dealing with this disease?

I have had LS for over 10 years and currently in remission. Last flare up 1 1/2 years. Only med that worked Clobetasol.

I received the StrataMGT. It brought me so much relief. I ordered from Amazon. I saw my dermatologist today and she gave me a better report than usual. She has me using Opzelura daily, clobatezol 3x week and the StrataMGT. The LS is best it’s been in a long time. Now if I can find a soap for shower. I flare every shower.

My post seems to have gotten lost so I'll repost. I use estradiol cream 3 times a week 1/2 tube and I'm about to get progesterone to go with that. Also, Clobetesol oitmemt and pyridium as needed. I have real urological issues and this seems to keep them mostly at bay. It's tough though. A constant battle.

@gaggy I use Ivory bar soap. I can’t use any other soap - not even Ivory in other forms, e.g., liquid. Just the bar soap.

Have you tried Cottonelle toilet paper?
It helps me

Thanks il try that 👍

My Dr has me using dermovate ... opzelura might be best for me especially it's not a steriod cream thank you for replying I'm new to this site

@minnesota10 and @allthesingleladies12 I used Cottonelle years ago and found it clogged up the toilet. I use Charmin Extra Strong which does not disintegrate with the slightest wetness, and does not clog the toilet either. The only thing I don’t like about Charmin is that the sheets are so small - at least, that’s the case with the Charmin bought in Canada.

(@minnesota10 you and I should be paid for promoting both these brands, eh? 😉)

Hi sorry for my delay in responding.
I have been prescribed Estradiol Vaginal Cream USP , 0.01 and Clobetasol Propionate Cream.
I do not feel I have gone into a remission maybe a couple of days in the past year. Seems I am more uncomfortable, inflamed with friction irritation sometimes burning like UTI. ( I have had several UTI tests in last year all negative).
Only had the itching and white patches in the beginning when I diagnosed myself. My gyno and primary seemed to have no knowledge, my dermatologist a little more knowledgeable and my kidney MD said I was probably using too much cream and his PA had no idea what LS is.
Sorry for rambling but getting very discouraged.
I am 67 and have multiple autoimmune issues and my mom at 93 had LS a couple of flares only, cleared right up.
Any suggestions you may have would be good.

I was recently told I have probable LS. I had rectal cancer diagnosis that was treated as anal cancer in November 2019. Chemo and radiation therapy has gotten me cancer free now. The radiation side effects were severe burns that cleared up after about 6 weeks and scarring of my vagina, atrophy in that area, and scarring of my cervix. After treatments for the cancer, I did have itching in the perianal area and thin skin caused bleeding there as well. My first pap smear after all the cancer treatments wasn't until mid 2024, and that is when is was discovered that my cervix was so scarred I needed to go to a gynecologist to get an acceptable pap smear. It was at the gynocology appointment that I brought up my continued itching in the perineum area and newly started itching of my genital area. I was diagnosed with lichen sclerosus by its appearance, and was prescribed colbetasol for the affected area. This cleared up my vulva itching, and helped with the area between my vagina and anus that was much improved but not gone. I have been getting sores that will bleed at times and less intense itching now. At my recent gynocology visit, my doctor did a much biopsy of the perineal area in order to confirm LS, so I am waiting on that. Needed another pap test as last year's test was positive for hpv but not 16 or 18. There are other strains that are high risk but not the highest that 16 and 18 are. Hopefully the pap comes back clean meaning my body cleared it on its own. The cancer I has was hpv related, so my gynecologist decided to do the biopsy to have an accurate diagnosis of my condition and rule out any concerns that it could be cancer. I never dreamed in a million years that I'd be dealing with all these problems in my private area. Its been frustrating, and I'm happy to see there's a support group here for this condition. This is my first post as I just joined the group, and I am looking forward to reading and learning from what you all have been through and posted. Its a hard subject to discuss with friends and family that haven't had these problems.