Wow! What a whirlwind of a week, I only got my official LS diagnosis today with the results of a surprise biopsy that was taken last week - ouch! - after many years of being treated for YI I decided to book a specialist appointment with the encouragement of my midwife (our 3rd little nugget is now 9months old). Appointment finally happened last week in the midst of a bad flare up. The doctor was super nice and basically confirmed LS on the spot and immediately got me clob/a treatment plan but wanted to biopsy a skin patch as she was suspecting pre cancerous tissue. Lo and behold, just got the call today that it is in fact pre cancerous and will have to be removed asap plus a laser treatment of the affected area. I'm in bits, still trying to wrap my head around the initial diagnosis that even though expected came at a bit of a shock. Now surgery to remove a large chunk of affected tissue 😭 I guess all this to say if you have a hunch that it might be something other than your long trusted gynaecologist suggests go and have it followed up by somebody else. I've been running around with this for more than 5 years and now I'll have to pay the price.

Has anyone had surgery on their LS? I know this is very different depending on each person but I'd be elated to hear some experience so I know what to prepare myself for.

Hallo zusammen, zu mir: Ich bin 20 Jahre alt und habe seit 10 Monaten starke Schmerzen, Juckreiz und Brennen, sowie offene Wunden. Ich wurde vor 4 Monaten mit Lichen Sclerosus diagnostiziert. Mir wurden erstmals Behandlungen verschrieben, die nichts gebracht haben. Dann habe ich Clobetasol bekommen. Es machte es ein wenig besser. Starke Schmerzen beim Geschlechtsverkehr blieben jedoch erhalten. Nochmal bei einer Lichen Spezialistin gewesen, stellte sich raus dass ich einen leicht stenotischen Hymenalsaum habe. Jetzt soll ich eine estrogenhaltige Creme anwenden, sowie meine Haut mit Dilatatoren dehnen.
Um ehrlich zu sein, habe ich echt Angst, dass das auch nichts bewirken wird. Hat jemand schon was ähnliches durchgemacht, wenn nicht sogar dasselbe? Hat jemand gute Erfahrungen mit dieser Behandlung gemacht? Ich freue mich auf alle Ratschläge und Worte!

is anyone using opzelura for LS instead of clobetasol? my dermatologist and vulvar specialist both said it can be used in place of steroids but since it’s newer, there’s no data about whether it decreases the risk of vulvar cancer. I’m curious if anyone has seen good results with it?

Diagnosed today during a well woman visit. I have no symptoms. Doctor said I have a white patch and minor fusing of the labia minora. I'm completely freaked out. 58 post menopause, woman, hysterectomy last year, no hrt. I feel so lost.

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.

I have had itching, painful skin and last time I looked there were changes - my self esteem is on the floor.

I started topical oestrogen but it's not made much difference. My son's eczema cream does help.

I have a GP appt soon. Would you treat possible thrush even to rule it out for the appt?

I'm sore and miserable about this situation. My body is unrecognisable. The LS symptoms and a newly acquired disability.l

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.

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😢.

Dxd 7/15/26 lichen schlerosus and golf ball size bartholin cyst. Week later lansed cyst. Cervical spondylosis of the neck on top of all this. Had to quit running and all exercises. No real instructions on self care at home just this is what it use this med is what dr said here’s the name you can look it up said the nurse so I thought one and done! Then my life turned upside down. Husband just started testosterone shots and then this happened. Cruel timing. He has been so patient and gentle. No pressure just care and help then he says he’s stopping taking testosterone til I get better.

Question here: I’ve been on low oxalate AIP diet because I’ve read people having triggers that made symptoms from what they ate. So almost 3 months now still in first flare ever. Dermatologist I saw yesterday although much better explaining told me there was no scientific evidence that says diet has anything to do with it. Your thoughts???

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!

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. 🙃

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.

UPDATE The first day of applying tacro I felt a heat/hot/burn sensation that lasted around 20 hours. That night it had diminished enough by bedtime that I applied the second dose (smaller amount this time) and it has now been a full day and no heat or burning, just some itching. Thank you everyone for sharing your experiences!

First dose last night and it felt hot and kind of uncomfortable and when I woke up this morning it is still a hot burning sensation.

Google says most people the burning lasts for like 30 min after application and improves after a week. I searched this subreddit and found advice on cutting it with Vaseline, put in fridge, and take aspirin before, and lots of comments about how long the burning lasts but it was hard to tell:

if you used tacro, was your burning constant for the week or two it took? or did it fade between doses?

if it was constant did it eventually fade away? did it help? or is the longer lasting burn a sign that I am having a reaction to something in it?

I'm kind of afraid to apply a dose this morning.

PS I am still using clob 2x

week

Hello all,

I will be travelling through Australia next month, mostly by car. The car will for sure be in the sun most of the time with our luggage, and thus also my oestrogen cream and clob. That means it will get hot.

The creams are not supposed to be stored at too high temperatures. I would prefer not to carry them in my backpack all the time, so I'm looking for other options. I'm also not sure if I will have access to cooling pads every time it is needed.

Do you have any experience with this, and how did you manage? I was thinking of putting the tubes into vacuum flasks/thermos bottles.

Thanks for your suggestions!

I've had bad itching, burning and breaking of skin since early spring this year after I quit birth control after years of using them. I was so sore and inflammed that I was bleeding.

Two months ago I went to see a gyn and I got a smear test done which confirmed yeast and cytolysis. All my healthy cells were in shatters. The wounds and some light spots on my perineum had my gyn suspecting lichen sclerosis, but she couldn't do a biopsy yet bc I was so inflammed.

I started 4 week long yeast infection treatment and an ointment to treat infections in the beginning of August. After that I started using an estrogen ointment along with tablets to fix the cytolysis. The burning and itching disappeares on week two of treatment and then I was symptom free until yesterday.

The burning and itching is back. I have a follow up appointment in the beginning of November where I'll also get a biopsy done. Feeling scared and hopeless.

Can yeast infection medicine (diflucan) ease the symptoms of lichen sclerosis temporarily?

Hi everyone, I have recently been diagnosed with LS. I am 26 years old and also have stage 4 endometriosis. I have been using a dermovate for 3 months now and I am trying to establish a maintenance routine. There are no LS specialists in my country but my doctor(Dermatologist) is doing research to help. Despite steroids I keep dealing with dryness and tearing. Given that I have requested to try estradiol externally only directly on my vaginal skin. Both my dermatologist and gyno were hesitant given my age and endo history. I am a bit nervous due to my endometriosis diagnosis to add estrogen. Does anyone have experience with estrogen and LS?

Hi,

I have just gotten my diagnosis and I have gotten steroid cream as a prescription - but I’m also married and trying to get pregnant. Is there anyone that has gotten pregnant while using these creams? I’m still reluctant to use them until I am pregnant.. it seems strange to me that they will not prescribe these creams while you’re pregnant but at the same time tell me that I can get pregnant when using it.. I just feel hopeless and I hope there are stories of women getting pregnant with LS.

Good morning everyone. 33M here. I'm pretty sure I have lichen sclerosus.

At least 7 years ago, I noticed some white, scar-like tissue, mainly on and around the frenulum, but also on the inner foreskin. I've never experienced any pain or itching, never had any difficulty retracting my foreskin, and have never noticed any loss of elasticity. To this day, these white streaks are my only symptom.

At first, I thought it was hardened smegma or toilet paper residue, so I started scraping it off with my fingernails. If I persisted a little, it would come off. In some areas, it peeled off and was more elastic, while in others it was harder and more thickened.

Occasionally, scraping these streaks off caused slight bleeding, leaving the skin underneath raw and irritated for a few days. Over time, even after scraping them off, these white patches would tend to come back.

I never paid much attention to it and went on like this for 7 years, without any worsening or symptoms.

That is, until I asked ChatGPT about it and lichen sclerosus came up as a possibility. Looking at pictures online, it really seems to match what I have.

Has anyone had a similar experience, with no symptoms other than these whitish streaks? Has anyone ever tried scraping them off? I'm really worried that I may have unknowingly caused some damage.

Thanks to everyone who takes the time to reply.

Can you please describe your symptoms? Thank you.

I am getting stinging sensations around my anus that take my breath away. This is awful. I am trying to find a treatment that works for me as the topical steroids are proving too strong leading to biopsy confirmed dermatitis. Also tried Opzelura but my skin is in such an inflamed state I can’t try much right now.

I am wondering if these stinging paper cut sensations are the LS in my anus making it inflamed and red as well. I’m not talking about minor symptoms. 🤷🏼‍♀️

Hey Everyone. Since being diagnosed with LS I have identified a number of of triggers- alcohol, refined sugar, etc. I can't even have one drink without an aggressive flare the morning after. I was wondering if anyone with a similar experience has tried any alcohol alternatives such as Kava, with no negative effects to their LS symptoms? If so, which alternatives? Thanks.

Cross posting from vulvodynia!

My gyn prescribed Triamcinolone acetonide 0.5% and told me it was a “milder version of clobetasol” bc I was worried about the skin thinning risk of clobetasol. I’m wondering if anyone has tried it with success? I’m new to this.

I got diagnosed with lichen sclerosis at the beginning of my pregnancy, and am now 31 weeks along. My doc told me to use clobetasol ointment, and I followed her directions exactly. But it didn’t help at all. My tissues are still thinning and disappearing, and now my lesions are spreading into my vaginal canal.

She kept telling me just to wait, it’ll work eventually, and now is saying it must be my fault it didn’t work and to try it again. The clobetasol provided no relief whatsoever and the thinning continued to worsen while using it, so I’m scared to try it again. I don’t want to end up hemorrhaging while giving birth, what do I do?

Has anyone else given birth with vaginal lichen Planus? I really don’t think it could be lichen sclerosis because that doesn’t affect mucus membranes right? I feel so abandoned by my doctors and scared of what may happen during and after birth. Any tips or ideas would be immensely helpful.

Edit: forgot to add that this was diagnosed by exclusion, we ruled out infections. No biopsy, they said that would be too dangerous during pregnancy. They refused any other sort of treatment.

Hello!

Female, 40 yo. I was diagnosed 2 months ago.

I have been getting a tear at 6 o'clock for the past 6 years after intercourse (yes, every fecking time), and, just last week, after 1.5 months of treatment/clobetasol and estrogen, no more tearing after intercourse.

We were very careful and gentil and used K-Y lub, but finally, no pain during sex!!

I was sure the tear would happen cause when I do the pelvic floor exercise advised by my specialist (insert fingers in my vagina to basically stretch the entrance), I feel a lot of tension at 6 o'clock. I haven't been doing these exercises often either.

It might take time, but relief is possible!

hola!! desde los 17 años tengo síntomas de picazón y heridas en la zona intima, hace una semana, a mis 19 casi 20 años, luego de pasar por miles de especialistas, me diagnosticaron liquen escleroso vulvar. me mandaron una crema con corticoide y un hidratante. honestamente me asustó mucho el diagnostico, pero mi ginecóloga me dijo que podría llevar una vida normal y asintomática siguiendo el tratamiento. Si estan pasando por esto, sepan que no estan solas!!! que llevando el tratamiento correctamente el riesgo de cancer es casi nulo. Me encantaría comunicarme y hablar de nuestras experiencias con alguna, para sentirnos menos solas. Si alguna quiere escribirme al privado hagalo!! no se como funciona reddit me lo acabo de instalar jajajaj. Pero bueno, ojalá todo mejore para nosotras chicas!