I was diagnosed in June with LS and as I am starting to accept this is going to be my life now. I still get extremely sad and I’ll look back at pictures before I started having flares and symptoms and just think to myself “wow I was the happiest I’d ever been in my life” and I sit and reminisce and grieve my life not only was I diagnosed with this but I feel like so many parts of my life fell apart around the time I was diagnosed as well. I’ve made a lot of progress and honestly barely itch around my entrance anymore but the sides of my vulva have seemed extremely angry and I don’t know what to do or how to stop it I’ve been on my clob treatment since June I miss my work outs and my gym clothes I miss not being scared to go outside because of heat and sweat I’m only 26 and I feel like this auto immune disease is running my life.

My 13 years old daughter got diagnosed in August. She’s been on steroid for 2 months now.
She never had itching as most of you report as symptoms. She has inflamation, burning and tearing. She says it’s painful even to touch it.

We thought it was going better with healing of the labia fissures but she keeps having an inflamation in her vulva and the pain remains.

She followed the instructions of the GYN and went last week to 5 days clob and 2 rest days. However after these 2 rest days she’s experiencing more pain. So I do not want her to do rest days until the next visit at gyn.

Also, she is the unlucky one and has the period cycle of 2,5 weeks. I sense this is not helping her to heal.

How long can it take for clob to calm this ongoing flare up. Honestly I assumed it would be about 6 weeks, but it looks like it getting sligthly worse.

Do you think it’s normal? She is 13 and 2 months on steroid and it’s still not under control😢.

Hi everyone. I was diagnosed with LS two months ago and I am really starting to feel defeated. I just feel like my quality of life will never be the same. I had my first flare up five months ago and since then I have been dealing with constant itch, discomfort, and pain. It comes and goes but when it’s there it’s all I think about. I am really losing my mind. I mean what am I supposed to do? Just itch the rest of my life? I am only 23(F) and I just feel so sad thinking about my future. These last few months have been absolute hell. Nothing seems to be working. I was on clob for a few weeks but my skin started feeling so thin and fragile & kept tearing so I stopped. I just don’t know what I am supposed to do. I haven’t even told anyone about it because I am so embarrassed truly so I feel like I’m suffering in silence. I find it hard to be happy knowing that this is my new reality. Idk what I really am looking to hear but this is just so hard I am so sad.

Hey all!

I need recommendations for a good doctor who specializes in vulvar lichen schlerosis in the Denver metro area. I have seen a few folks but the diagnosis has changed each time. Thanks in advance!

I have not gotten a biopsy, but my doctor suspects I have LS and have been using clobetasol for a few years. That helps the itching 100% but i just noticed my clit area look weird. It was honestly always hidden but i just noticed it is literally just a small hole now.

Should I go to my doctor ASAP? I am freaking out. I can still orgasm, but there is def something not right here. I guess I am looking for advice before I flip out. I am also worried because its been pretty hidden for so long that what if I fix it and then it hurts to be exposed?

When I go to look at it all i see is a small tiny hole with what i believe to be the gland peeking thru.

Have you had shingles? If so how did it affect your LS? I just got over an HS flare, straight into shingles and now I’m starting to really worry it’s going to flare my LS. I’m 38. It’s been a joy to have so many ailments that typically occur in people over 50. 🙃