r/lichensclerosus

I need to hear people stories who have it under control and have no symptoms. If so how’d you get there? I’m really upset and feel like this is never gonna get better. I have had symptoms for 2 year.

i’m so so so scared. my doctor explained that they will need to perform a biopsy and to do that, they need to cut out the suspected LS. i’m not going under any anaesthesia and i’m literally shaking thinking about it.

what was everyone else’s experiences with getting tested?

I’ve had this on my mind since my last Dr’s appointment. I mentioned wanting a script for more Clobetasol (for when what I have runs out) and the Dr was like “How much are you using it?” I said that I try to get clips where I just use aquafor and every couple of days use a small amount of the Clobetasol with it. She seemed concerned that I was using it so much. When she examined me, though she said that all the tissue looked fine down there and her concern was that using the clobetasol so much would thin the tissue? That had not happened for me she said.

I felt so discouraged after that appointment like I was doing something wrong. I forced myself to go a lot longer without using any of it and then I ended up in a pretty bad place where I had to use it to get myself comfortable again. Am I abnormal in that I need to use this pretty “often” and can not get weeks or months of time where I don’t start to feel like I need a treatment of it?

Is this just a case of my doctor not experiencing or understanding LS herself and she is unrealistic with her comments? Is there really a concern about skin getting “thin” there? Because how raw and awful a flare feels I’m not sure that “thin skin” is a worse trade off…?

After that appointment I vowed to make a post here to see what the thoughts were from people who are actually in the trenches with me?

Hi everyone, I was wondering if anyone has experienced something similar. My fourchette keeps tearing during sex, even when I’m careful. My doctor currently has me using clobetasol 3 days a week, and has now also prescribed tacrolimus twice a day for 3 months.

Has anyone been prescribed both at the same time like this? I’m wondering if this combination seems excessive, especially using tacrolimus twice daily on top of clobetasol 3 days a week. My main issue is the persistent tearing of my fourchette, so I’m also curious whether tacrolimus actually helped anyone with skin fragility or tearing.

I was diagnosed with LS in June and I’m coming close to the end of my 12 week treatment which was clob once at night before bed I still have very frequent flares no more pain but still very itchy. I have had maybe a couple days of no itch or pain and not back to back. With that being said how am I supposed to know if I’m in remission because I’ve heard it can be “controlled” and that is considered remission. What do you think the derm is going to say or do when I go back for my appointment in mid September?

Hii everyone!! I recently went to my dermatologist and was diagnosed with lichen simplex chronicus. In the past, I was misdiagnosed with LS by a doctor, I was treated with a high dose of cortisone ointment back then, and it seemed to help a lot. Now, my itching symptoms are mild, and I have been using Tracolimus for almost 3 weeks now that I apply every evening after showering.

What I'm wondering now is, when do you see improvement? During the first few days, I noticed that I experienced a bit more itching or discomfort around my vulva during the day. Sometimes and especially in the beginning I would still scratch or pinch, and only then would I feel a slight "burning sensation," so not immediately after applying the tracolimus.

I have to say, now that I'm in my third week, I'm slowly seeing improvement. I also often use an ice pack and wash my vulva with cold water, which helps enormously to calm my skin down. LSC is a continuous itch-scratch cycle, so naturally I have to restrain myself from giving in to it. My sleep schedule has been really bad for a very long time because of uni and stress haha, but during the last few weeks while using the ointment, I sometimes wake up in the middle of the night because I experience slight discomfort or itching, which is new for me.

But I wonder, how long did it take for you to see improvement? When did you notice that the itching clearly decreased? Should I just trust the process and continue? And is what I'm experiencing in the first few weeks normal too? My dermatologist said I can still come in for a check-up within 3 weeks, so maybe it would be wise to do that as well? Thank you!!

Hi and ugh. Why would I feel worse from the Clob cream and then the ointment? I have been on one week and thank you. 😞

What’s your experience? I started on clobetasol and my skin was super red, stingy and itchy everywhere. After a bit more than a week and a lower dose, my skin is back to its usual color but I still feel stinging and burning in the perianal area. It is super sensitive and stretching the area hurts a bit, like it’s not elastic at all.

So I got prescribed clobetasone instead, I want to hear your experience on clobetasone if you have any.

I (20F) have had symptoms for around 6 months now. They get extremely bad when my period starts. The itching is relentless. It wakes me up in the middle of the night and it’s been ruining my life. I get fissures all over my vulva and around my anus. Using the bathroom is excruciating during the flares, and I avoid popping at all costs. The itching continues for a week after my period. Going to work and being around people during these flares is so difficult and I have considered quitting my job over it. I work a customer service job and having to interact with people while in such discomfort is unbearable. I go to the doctor tomorrow morning to hopefully get diagnosed, but I still feel hopeless. Even if I finally get diagnosed, will I ever live a normal life again? I can’t remember what it was like to have a vagina that wasn’t raw, itchy, and covered in cuts. How much do the creams help? I feel like I’ve taken my whole life for granted and I would do anything for this to go away. School starts soon and I worry about how I’m even going to sit during class.

Hi all,

I have had LS since I was at least 4, it was in remission for most of my life and then now, in my 30's it's rearing it's head again, so I feel like I am learning about it from scratch, especially as my Mum was pretty useless when I asked her about it

My main question, is I want to try and understand what LS flares are like. I'm autistic, so I find I often misunderstand written descriptions like medical ones, or just struggle to relate things to my own experience, even if they are actually the same.

A few years ago, I had what I am assuming was a bad LS flare. My vagina was in so much pain, it was like a deep muscular pain, the only way I could describe it to my GP was that I felt like a full size baby had been ripped from inside me. I was itchy, so dry, and the skin was incredibly fragile. I know from numerous doctors over the last 10 years or so that I have visible extensive LS across my vagina, all along my perineum and around my anus too. When this flare up occured, all of the affected skin just peeled. At its worst going to the toilet was horrific, I dreaded it, trying to wipe with toilet paper was so painful, I switched to wipes, I was taking constant painkillers, and yeah, it was just horrible.

At the time, I didn't know it was an LS flare, I didn't know flares were a thing with LS. Mine had always consisted off a period of intense itching, where the skin would become and fragile and bleed easily, but then things would clear up. I had never experienced anything like this. My GP didn't recognise it as a flare, the sexual health nurse didn't either. I think eventually we came round to thinking it must be the LS, and I am fairly sure it cleared up after I started using clob. I was then referred to a joint Gynae Dermatologist clinic, and the two Drs that saw me there were brilliant.

So I guess what I am asking is, I am still a little unsure if this was actually an LS flare, or something else altogether, as I never seem to see people talking about similar experiences. I think I am at the beginning of another flare too, so.if it is, does anyone have any advice for managing it? I do have clob now, and I shall start reusing it today, but any other advice or tips and tricks would be hugely appreciated.

I have asked for a doctor's appointment soon as until recently I never heard of LS and now I think I definitely have it after reading symptoms. Reason why I never bothered to find help before was I had accident before that left me a scar there which I thought was the root cause (I was very young and fell on a stool)

Just wondering if anyone else had the same issue and maybe it is related/ caused it?

Hi all, I have seen a gyno today as my GP diagnosed me with LS last week but wanted me to see a specialist to confirm and get a proper management plan.

The gyno wants to do a biopsy to confirm and also see if it could be psoriasis instead but said because of the placement of skin she wants to take, she wants me to do it under light anaesthetic in the proper hospital- rather than just using local in her doctors office. I was wondering if anyone else has had this experience?

Thanks for you help !

I have LS and recently started taking vaginal estrogen as I’m in perimenopause.

I don’t want to use my fingers to apply it and prefer the disposable applicators.

Is there a brand that is safe and non toxic for LS that you use??

I just started twice a week maintenance a few weeks ago and was feeling really good. I noticed last night that my residual hymen is wanting to fuse to my labia again, so I put clob on a couple days early.

Do I have to go back to daily use again? If so, for how long? Initially I was prescribed once a day for 3 weeks then twice a week maintenance.

I DON'T WANNA!

I didn't get instructions from my derm as to what to do in this case. I might be able to get an appointment next week, but not for a couple of days at least.

How do you get diagnosed? I have been suffering for 4 years and I’ve been to multiple gynos. I had white patches at first but they seemed to go away. I now just have constant itching/ burning/ tightening “flare ups”. Sex is impossible because of the severe tearing.

Every dr I’ve suggested this to will take one look and say no it’s not lichen (I think 4 different gynos at this point because my insurance keeps changing)

I have abnormal paps (which i have researched and lichen can cause this) with no HPV and they keep recommending painful cervical biopsies - I’ve had multiple at this point and they are traumatic, the results are always fine.

They always make it seem like it’s my fault and suggest lubrication and vitamin E oil without looking into my concerns.

How do you advocate for yourself? I’m desperate and depressed this has taken a toll on my mental health.

Is the biopsy to test for lichen extremely painful?

I read all the time how rare it it, like 0.1% of the population or something

But doesn't it seem like way more of us have the Dx? I dont know- could be just because now I'm in chat rooms and groups about it so it feels like more

Hi guys does anyone find discomfort using tampons with LS? I notice that if my period isn’t heavy enough I will feel a tad itchy and uncomfortable. If you do use tampons, which brand is the best to use in your opinion?

I'm really sorry if this is going to be TMI, but I'm pretty anxious about the whole situation right now.

I was diagnosed with LS when I was very young, but I completely forgot about it. Fast forward to this year when I got pregnant, and my mum said "oh yeah remember to tell the midwife you have LS". Well, I did, and my midwife went... "what's that?", and so did every other midwife since then.

Long story short, I've never been managed by anyone, not the GP, nadda, and now the midwifery team don't really seem to know much apart from "increased risk of tearing and do perineal massage". They haven't even looked at me down there or referred me anywhere.

I booked to see a private pelvic floor physio who looked for me, and she said everything looks normal but is just lacking moisture/elasticity. She recommended some products, but I'm concerned as sometimes I get minor perineal tears if during intimacy there's too much pressure there, and I'm not being funny, but my foof just seems too damn tiny to fit out a huge fricking baby.

I'm basically looking for advice/reassurance, because I'm 30 weeks now and feel like I'm running out of time, and the NHS seems to know jack poo about LS in my area.