Lichen Sclerosus: Any other women dealing with this disease?

Hello yes Clobetasol make dark skin very light and it made small bumps along the Vulva.
I have had it for 1year6months and today I see open sores inside of my vagina.
This is the saddest invader a sexual active person can have. I am 50 and lost, I have a flare up every other month or every time I have sex. I wish it was some cream I can use without steroids.
I need help as a young lady in a relationship for 16 years....I am going to lose him.

I am glad that Lichen Sclerosis is getting some visibility as a result of patients sharing their comments and what works or doesn’t work for them. I began having LS as a teenager and any gynaecologist that I saw kept treating me for a yeast infection over the years. In my 30s it got worse and it seemed that no doctor was aware of LS, causes or treatment, not even dermatologists. Finally a smart dermatologist who headed up the largest teaching hospital in the city diagnosed me with LS. At that point I learned that LS is a dermatology condition and not an STD. I was always puzzled as to how I could have contracted an STD. This is a good reason that if a person doesn’t get answers from gynaecologists they should make an appointment with a dermatologist. As a minimum discuss the possibility of LS with your gynaecologist.
In my 30s with yet to be diagnosed LS I felt like a leper. I was in pain, I was consequently depressed and had difficulty going to work or leading any kind of a life. Stress exacerbated my condition, family didn’t understand, some suggested that I might have AIDS. This was at the beginning of the AIDS epidemic when little was known about it. My husband was supportive and that helped a lot. However my situation was not anything you would want to experience. There are many women out there with LS, who remain undiagnosed. My heart goes out to you, I know what you are going through. Take heart, control and freedom from pain is possible. Keep seeking answers and keep talking about LS, the more publicity for this condition, the more likely that physicians are aware of it and make the correct diagnosis or referrals.

So glad you were finally diagnosed. Your comments are very helpful. What treatment did you get for your LS?

Clobetasol ointment 3 times a week for two weeks then just petroleum belly for the third week. Repeat the cycle. For nerve damage associated with LS I take pregabalin and amitriptyline. So far so good!

Thank you for your prompt reply. I cannot take steroids orally or externally. So, if I may ask for clarification,
*do you have to do lazer treatments annually?
*or did the first treatments basically cure the LS and how many years has it been if so?
*did the lazer treatment reverse any anatomical damage? Or just stop it from
Progressing?
Thank you for answering. This is a stressful disease and I appreciate all the help I can get here.

Ask for clarification on using steroids topically where you need it for LS. Clobetasol is formulated to treat it, is a lower % strength, a cream. Not oral prednisone at all. I would push on this. Good luck! I am still asking for more info too, can take time and effort finding an MD who has the knowledge, not all do!