Treatments for Lichen sclerosis besides steroids

@bustrbrwn22 Have you thought of looking for a new doctor? This link might have some information for you.
https://rarediseases.info.nih.gov/guides/pages/25/how-to-find-a-disease-specialist
You need and deserve to find answers!

I started having collagen powder in my coffee to help with post covid hair loss.4 months later I realized my LS has not returned. Has anyone else experienced any benefits of collagen powder?

Welcome @salby, My wife and I both use collagen powder mixed in our coffee in the morning. She likes it because it helps grow her fingernails and I started using it because mine were brittle and it has helped with mine also. I'm hoping it helps some with skin since I have skin that is easily bruised and pretty thin. Here's some info I found on benefits:

-- Collagen - The Nutrition Source:
https://www.hsph.harvard.edu/nutritionsource/collagen/

I'm not positive if i have lichen scholus. i'm waiting to get a appointment with a vulver specialist. but the gyn office i was going to it was a nurse practioner who told me i had it after she examined me. i never even heard of it before or ever really had any gyn problems prior to that but she had given me some kind of estrogen cream to insert twice a week. all it did was cause rally intense itching. when i saw her i had no symptoms whatsoever so to be told i had this was confusing and socking. soon after i ended up seeing a actual gyn causepeople were telling me i should have a biopsy to be sure. the gyn was all set to do a biopsy until she examined me and said she was almost certain i didnt have sclorus but rather simplex so i was a bit relieved. she had me use the clob. i did and my symptoms got worse. i did tell her at the time i had had a bad reaction to prednisone but she still insisted i use the steroid ointment. when my symptoms got worse and i went back in, she said maybe sclorus(i guess they cant make up their mind), or maybe stress or maybe yeast as i had had a bad yeast the month before. she had me use nystatin for a week. it didnt do anything. then she decided without seeing me(i asked and she said she saw me twice already and was no need to see me again for a couple of months) she called in a low dose steroid to use with the clob(a strong steroid) well that kept me up most of the night itching. i stopped both it occured to me on my own that i got worse because of the steroid ointment(never mind the estrogen cream) i havent been in touch with this gyn office since. i have tried eumaid and aquafor which burned me. now while i wait to see the vulver specialist i do 2 epson sitz baths a day and apply a suave aloe vera lotion. it has helped better than anything else and i will do this until i see the vulver specialist. i'm actually having allergy testing today. im not sure if they can test if im allergic to steroids but i am going to ask.

I had my first laser treatment this week. The first of a series of 3. I’m praying that this will stop the progression of this difficult condition. I’ll be back to inform everyone of the outcome.

Is this laser treatment called "Mona Lisa?" I was told about this at my gynecologist's office. It is very expensive. I hope it will help you. I am waiting for a different compounded cream to numb the vulva area. This will be the fourth one. Of all the health problems I have, LS is the absolute worst! It is among the several "no cause, no cure" issues I have. With all good wishes, @joybringer

I had three treatments. I still feel amazing after 2 years. Must still be diligent about using Bedaderm or another ointment twice a day.

Dear Joy,
I agree w you and likely most people on this site that LS is a nightmare! When I was told I had this I cried for 2 days. It’s embarrassing to talk about , limiting in your activities and painful. The Mona Lisa is sadly not covered by insurance but it should be !! It’s the only course of action to stop the progression of this nightmare. I’d like to speak to my dr about a possibility of setting up a foundation to help woman afford this . My dr was also kind enough to give Cancer patients/ survivors a discount. She feels it’s the only route C patients can take bc they generally cannot use estrogen creams . Maybe lobbying the insurance companies is the way to go . Lasers are not considered essential by insurance companies but in this case it very much is essential.

I’m knew to this thread. I was diagnosed with lichen sclerosis about 5 years ago and it has drastically affected my life. Sex is out of the question and I have itching most nights. I have it controlled with a steroid cream that I use when the itching becomes more intense but I’d like more information about the laser treatment. Can I hear from anyone who has had tuis treatment? Or any recommended treatments besides the steroids creams? Any recommendations on vaginal moisturizers that won’t cause a flare up?

It’s miserable in all the ways you mentioned. I have had 1 of3 treatments of Mona Lisa laxer treatments and I already feel a great improvement. It’s pricey but it’s worth it . I am still careful not to do anything that I know may cause irritation but I know it’s considered the only way to stop its progression and give relief of symptoms. Go for it !!!