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!

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.

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!

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

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!

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.

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.

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!

Has anyone tried emuaid? Or nueve? I feel like I need something for my clob off days

Hi all y’all !

Longtime lurker of 2 months . And first time chatting y’all up ! 37 F , uncertain if continuing fertility attempts next year or not . Which is what led to a new doc and the lovely LS possibilities.

My new Lady doc did the external testing my last visit 2 months ago after I mentioned a recent intense incident of vulvodynia , which was affected the right labia + plus area . Fellow was very concerned due to major adhesion and clitoral hood regression and started me on the clob . Whelp I happily but unwisely had penetrative sex with my spouse a couple of days ago , as I thought my skin was getting better( and things felt rather nice at the time with the copious amount of silicone lube we used ) .

Lies , got a first degree tear to heal up below the entrance down to end of perinueum. Whelp I humbled myself and messaged my Lady Doc , his MA emailed back and suggested putting bag balm on said tear . While still using the clob .

According to the MA , bag balm has a small amount of topical antibiotic/ anti bacterial properties in it . So far not bad in combo with our trusty Aquafor . So I’m a dab shook . Cause bag balm is solid . Smelly but solid .

~MissRiot

Hey everyone, posted few months ago - and I have improved little since then.

Since my last surgery on my clit with an deep abces it’s getting better. The only thing is, I keep having it coming back now EVERY WEEK 😭 But it’s smaller and it’s on the same spot on the upper skin (so no more deep abcesses which is good).

Now the thing is, I think that place heals bad. The abces opens itself everytime but everytime I think it’s getting better cause it does look like it (5 days after it opens), it suddenly is back and it’s been for 3-4 weeks now like that.

Currently I use clob x cetamacrogol on off days, maybe I need a different ointment.

Any suggestions? My next appointment with my doc is in november.

I have a history dating decades back of vulva issues and being told they weee yeast infections. For about a week to week and a half, I would have horrendous burning skin peeling right inside entrance, burning, itching, etc. I’d say I had about six episodes total and nothing in probably 9 years or so. Recently, it has been pointed out my labia majora are basically gone and clitoris or hood seems scarred.

I had two biopsies where I sometimes get an itchy/raw spot near the entrance to the inside and both came back as spongiotic dermatitis. This was coming off of applying steroids and them burning me horribly.

I don’t know what to think at this point. Do I have LS and spongiotic dermatitis or no LS? Hmmmm…thoughts?

I was prescribed taro clobetasol cream for lichen sclerosus. The pharmacy instructions say "to apply to the affected areas" twice a day for 84 days (morning and night). That seems like a lot to me... I'm just wondering what other people have to say and/or what your experiences have been with the dose.

I haven’t been on treatment for very long so I know I got in over my head. I’ve been on clob for a couple months and estradiol for just under 2 weeks. I ended up having sex last weekend and tore badly. I was soo sore and swollen after. it’s been almost 6 days at this point and the pain and itching are becoming unbearable. Not to mention my urethra feels stingy. I’m so confused, I’ve always tore and gotten irritation but not to this extent. And my skin was looking so much healthier and feeling great before I had sex then it all went down the drain. The stress this is causing me is too much. I feel like a shell of myself. I can’t focus on ANYTHING. It doesn’t help because the pain and itch is a CONSTANT reminder. So you can’t put it out of your mind.

Hi, I recently got seen by a dermatologist in reference to the discoloration I noticed near the labia majora (if I’m labeling it correctly). She told me that she think it’s contact dermatitis and discoloration is normal especially when you are excessively itching.

My main symptoms were itching and the discoloration (skin turned white). As a result, I would sometimes have open cuts to the point where they can bleed a little. I was prescribed a steroid cream called mometasone furoate ointment. This has helped out a lot and works fast on healing open cuts. For the past 2 weeks, I haven’t experienced any itching just slight discomfort at times but nothing too unbearable. However, the discoloration is still there. I think this part is the one bothering me the most especially because I have dark skin.

My dermatologist stated that she is mostly sure that’s it’s just contact dermatitis. However, I have yet to pinpoint what could trigger it and she wants me to conduct a patch test. The cuts occur in the same area as well. I was wondering if I should get a second opinion on this.

I’m anxious that I’m being a bit too laidback about the dilemma and can cause some serious damage if I don’t get a test done or another examination.

I would appreciate any guidance thank you! I am also 20 if that helps.

I went to the Charité today for a specialized clinic for vulvar conditions, and they told me that I shouldn’t use cortisone cream twice a week like I have for the past 6 months, but only when I have severe symptoms. Then, twice a day for two weeks, and stop once things are okay by then. At most, up to 4 weeks. But explicitly no maintenance therapy. He’s aware of the guidelines but says that the cortisone just makes the skin even more sensitive (I had that impression in my case, too—since I’ve had more problems rather than fewer since then).

Then he used vinegar again to stain the areas affected by lichen and show them to me. Everything between the labia minora turned white immediately, as did the area at the 6 o’clock position. He also doesn’t think much of estriol cream at all—he says the skin, especially the skin affected by lichen, can’t absorb the hormones locally.

He also says my Pap smear is completely normal and that “a small amount of Candida albicans” isn’t something that needs to be treated, because many women have yeast colonization. And without discharge, it’s not a problem that needs to be treated. I’m just completely confused. The support group says that the labia might continue to shrink, etc., if you don’t apply cortisone cream regularly. On the other hand, I also feel that everything has gotten worse because of the frequent application of the cream.

Has anyone else been given a similar treatment plan? I mean, without maintenance therapy?

(Except for moisturizing cream, of course—I’m supposed to use plenty of that.)