Newly diagnosed and confused over treatment for lichen sclerosus

I have had LS for over 10 years. For itching, I took hydroxyzine 25 mg every 8 hours as needed. I no longer itch, I just burn, I use Premarin cream 1 gr twice a week and Halobetasol Propionate ointment 0.05% twice a week. With flares, I use more of each of these beginning with twice a day for two weeks then once a day for two weeks. I also take Amitriptylin 25 mg at bedtime. For numbing, I am currently using a compounded cream every 3 hours. In the past, I used Lidocaine 5% for numbing and that is included in my compounded cream at 6% along with Aquaphor ointment. You have my deepest sympathy for having this new disease added to your long Covid. With all good wishes, @joybringer1.

Hi @ronag, along with the helpful response from @joybringer1, I'd like to also tag fellow members like @willows @nanfran27 @sbrown293 @sspil5 @cookiegirl1944 @kewp @kathy5645 @kitten92 @eileenb1022 who have experience with lichen sclerosus and its treatment.

You might also be interested in this related discussion:
- Lichen Sclerosus: Any other women dealing with this disease? https://connect.mayoclinic.org/discussion/lichen-schlerosus/

Hi thank you for tagging me in this discussion. last june i was told by a NP at a new gyn office i had LS. after having a bad reaction to estriol estrogen cream and clob and another ointment i saw gyn also they were going back and forth i was getting worse eventually someone on a LS facebook group recommended a vulver specialist. he has been amazing. first i dont have LS. i have dermatitis. probobly from all the creams and ointments i reacted badly to it. he did prescribe estrogen for me as i needed it being premenapausal he ordered me a estrogen suppository from a out of state pharmacy. so far so good cause he had to be careful as i reacted badly to the others. i do use coconut oil as i still get itchy. that helps. i guess my suggestion wold be to find a vulver specialist. they really are the best. someone who specializes in LS. good luck.

My dermatologist has prescribed the Clobetasol twice a WEEK for 2 weeks then just Vaseline for one week then back to the twice a week and so on. When symptoms like itching and burning stop I can just use the Vaseline and only continue the twice weekly regimen if symptoms reappear. This is to avoid the thinning of the skin that happens with applying steroids.

Thank you Willows. Did you start with twice a week right off the bat, or did you have a more intense treatment (ie daily) initially? And if the latter, for how long? My gynecologist and dermatologist have two very different approaches and I'm not sure whom to follow. Thanks for your help.

Thank you for your input. Good luck with your journey with the dermatitis.
I'm not sure how to go about finding a vulvar specialist. Would this be a dermatologist or gynecologist?

Thank you Joybringer 1. Have you always used the Halobetasol Proprionate twice weekly? Was there an initial period where you used it more frequently? And if so, for how long? Thanks for your help.

Thank you Colleen. Looking through the Lichen sclerosus discussion I understand that there are many approaches, but have yet to see someone prescribed the clobetasol daily for 2 months. It's scary to think of putting a steroid on my thinning, aging skin for such a long time. I have the feeling if I'd go to a 3rd doctor I'd just get a 3rd treatment protocol. I'm not sure how to proceed.

So, with this regimen how frequently do symptoms reappear? I also use the vaseline daily.

Hi,
no its a gynecologist. id google or like me i was in a LS facebook group and someone recommended this vulver specialist. i wasnt familiar with him or his practice but i feel very fortunate. good luck!