r/lichensclerosus

I’m getting over an internal yeast infection. Discharge is pretty much gone but the lower vaginal opening area and the sides of the Vestibule feel tight and a little red irritated. If I look closely at the vestibule it looks like a red line indent .. like a crack…Not sure if this is the yeast subsiding or my LS acting up. Since yeast can cause cracks too..Maybe the YI aggravated it? I’m so confused with these as they tend to come same time 😞. Anyone have anything similar? Can I use coconut oil for the time being?

I am curious. I have heard that some people see a gynocologist while others see a dermatologist for LS treatment. Which do you guys see?

I was diagnosed with LS several months ago and was given a resounding no on steroids. My symptoms are all internal, my urethra all the way to the bladder are the problem. Been in pain for a year and a half.

The only thing I was offered for any sort of treatment was stuff to dilate which hurts almost as bad as when I got the cystoscopy done.

Dilating basically knocks me off my feet for a whole day afterwards I can't do anything I don't have any energy I'm just in so much pain so I get to do it on a Friday night and lose my Saturday what fun.

The doctor didn't want to do anything with steroids which I think kind of makes sense I I would have to apply it daily internally and if it's anything like dilating it would ruin my life doing it everyday.

I just don't know what to do, they threw an antihistamine at me and pretty much shrugged their shoulders.

Uninsured too so I'm going to struggle to get a second opinion anywhere else.

Even trying AIP diet for a few weeks doesn't help with pain.

I also feel insanely guilty I can't cuddle or be intimate with my partner as much as I'd like, and I kept saying this was something I'd fix and wouldn't be a problem in the future and I feel like with what I know now I lied. They the most supportive partner I could ask for, they do so much for me and to take care of me.

unrelated but related I'm a trans woman

Hi all,

I posted last week asking if I should get the O-shot. Well I just got it. I will report back on how it goes.

So far it was expensive and painful even with numbing cream and she said there may be a flair up within the first week as the immune system settles. I am hopeful but also know she said at least yearly doses are needed.

Wishing you all well, I will do edits on this thread as time goes on.

Hi all, I was diagnosed a few months ago. Initially I was super relieved after years of pain and improving symptoms (I’m not crazy! There is treatment! My symptoms are real!)

But now I feel everything is starting to sink in? This is for life. Always applying the creams, managing symptoms. I told a few people initially and while they responded really well it seems like everyone (including my partner) just forgets? It feels to me it’s also not something you bring up over a cup of coffee. Today I had a nasty flare-up at my new job and I realised that I did not feel okay at all to talk about it and just had to bear it until getting home. It feels like I’m back at square one.

How do you deal with this long term? I have a hard time accepting this. Thank you for reading my long and whiny post.

Oh my ffing god. I had my punch biopsy 2 hours ago and the local anaesthetic is wearing off. I am in so much pain. She put gauze as I was bleeding a lot. Can anyone please share tips. I cannot even imagine having to pee!!! Help 😭

When you get yeast infections while using the Clobetasol (or whatever steroid) is it on the outside or inside? I ask because I’ve gotten multiple YI and all are inside. But I’m also 51 perimenopausal and apparently it’s common at my age for infections during the estrogen drop. I was using Clob but less then half pea size amount on just a few spots on vulva …

Hi all,
just wanted to share that I finally found a good OBGYN who listened to me, despite my having mostly given up, who took me seriously and is really trying to help.

i’ve been in a horrible flare since January and i really gave up. moved to a new state and somehow came across a Dr that cares. She told me that fusion has started around my clitoris and posterior fourchette, which is such a blow, and i’m really struggling with it, but she is really hopeful and listening to me. don’t give up guys, keep trying to find someone who cares.

According to the rules no photos are allowed in posts but many posts are from sufferers trying to get advice / support for conditions they are describing. I can understand nudity is not something to be pushed at people and the sub must not become a place for the wrong people, but with this condition medical type photographs are a valuable resource for helping to convey symptoms. They could be NSFW marked.

I think a rule change would be helpful.

Am I alone on this?

Hi everyone! I was just diagnosed a month ago (23F) and am just starting week 4 of clobetasol. I was doing 2x a day for the first 2 weeks, then twice a day for 5 days and tacrolimus on the weekends.

My white patches have completely cleared and my vulva looks normal again, but I still have some residual itching. That being said, my skin feels dry and irritated after I apply the clobetasol? I’ve tried adding in some jojoba oil and Vaseline at night but it’s not helping all that much. I might try dropping down to once a day and maybe add another day of tacrolimus instead of clobetasol. The tacrolimus doesn’t make me feel dry, but it burned BADLY for the first few applications 😭 putting it in the fridge first only kind of helped

Has anyone else experienced this? Any advice?

For those of you who use Vaseline daily, are you just letting your underwear ruin over time or do you have tips for how to keep them from being so oily forever?

I was hoping after my flare up goes away I could stop using Vaseline long term and get new undies altogether, but it seems most people use Vaseline in between flares to help with dryness, etc. so I will probably do the same. Just hate the underwear situation and I don’t want to wear panty liners all the time :-/

hey everyone! I need some support because I’m seriously going through a tough time with my lady parts :(

So a little backstory I (29F) never really went to the gyno or even checked my lady parts often (prob stemming from the household I grew up in, Asian parents, never talk abt sex, my mom sees gyno as someone you go to only if you have sex, she is super Christian so basically it’s all taboo)

I’ve had slight pain/ripping from intercourse starting around 4 years ago but just saw it as an angle issue (IDK looking back now I wish I seeked professional advice) and here and there have irritation and itchiness but still it never bothered my day to day life so I let it go. I’m not even super sexually active either.

Anyways last week my partner noticed my vagina looked weird (slightly grey/whiteish) so I booked a gyno appt immediately. I went, they said it does look suspicious and potentially lichen and suggested a biopsy which I had on Thursday. The biopsy was done by another gyno who noted my vagina looks particularly dry and thinning and said it looks like something that’s been going on for awhile. She suggested estrogen cream but asked if I wanted to still do the biopsy which I did just to rule out anything else.

And the biopsy hurt like crazy. It was on my right vulva. And I cried all the way home! I don’t have a high pain tolerance at all.

So it’s been 3 days since the biopsy and my vagina just looks a fuckin mess. It looks so ugly I can’t even distinguish where my clitoris is and basically where anything is. It stings and still bleeds (probably because I keep tugging to look at it or try to clean it) my gyno says it takes 3 days to stop hurting but it still hurts.

I just feel so sad and down on myself for not getting checked earlier because maybe this could have all been avoided. The gyno also said my thinning and dryness is more seen in women of menopause so I’m literally wondering why as a woman in my late 20s am I having this issue…

And to top it all off my Pap smear came back saying I have BV so now I have THREE issues with my lady parts.

I’m just wondering if anyone has been in a similar situation as me? Or any words of support would mean so much! My biggest concern is healing from this biopsy and if I can recover from my thinning vagina because rn whenever I look at my vagina I just feel so sad.

interesting article published recently that GLP-1s may reduce symptoms of lichen sclerosus. https://jamanetwork.com/journals/jamadermatology/article-abstract/2848174

I’ve been on one for nearly a year and I've not had a flair up in 6+ months I’ve even stopped using steroid cream for maintenance. could all be a coincidence of course but anyone experiencing similar?

Diagnosed about 7 months ago postpartum with my first, though I’m certain I’ve actually had LS for a decade or two. Interestingly, my symptoms seemed to be in remission during pregnancy, though I wonder if LS may have contributed to my 3rd degree tear during birth. Currently on a maintenance dose of clob.

I’m now TTC again and my dermatologist has prescribed mometasone as an alternative to use during pregnancy. I’m curious to hear other’s experiences switching to a less potent steroid? Is there any protocol I should be aware of? Or can I switch directly to a maintenance dose of the new steroid? Alternatively, does anyone have experience remaining on clob through a pregnancy?

(I haven’t found my derm to be overly helpful so far, but will obviously reach out to them for more info if need be.)

Feel free to chime in with any other advice or experiences you have around LS and pregnancy/birth… I’ll take all the information I can get!

Almost a year ago I was diagnosed with Lichen Sclerosus, I will share things I wish I knew.

• Limiting products less is more , Being careful with skincare and detergents with fragrance• Using gentle routines and avoiding over-cleaning, Paying attention to foods that triggered me (for me I looked into high histamine foods)• Using barrier protection like Vaseline or CeraVe ointment for friction and sensitive skin• Not relying only on steroids also focusing on skin care and daily habits• Starting a more anti-inflammatory diet and paying attention to my gut health• Learning that stress, sweating, friction and walking during a flare can affect symptoms too

I’m still learning and everyone is different, but I’m in a much better place now than when I was first diagnosed.

For people who have had LS longer: what do you regret not knowing sooner? What helped you the most?

I’m 25 and in the UK- saw a doctor last year and was told it’s probably just dermatitis, was given a low dose steroid to use for 2 weeks as I’m “too young to have LS”. Things have been getting worse this year so I managed to get in with a different doctor, she examined me and said she was giving me a strong steroid to be used 1 month every day then to stop and have a break, from then on if I have a flare up to ring up and get another dose. I said “so do you know what’s wrong with me?” and she said “it’s lichen sclerosus”. I asked if I need to have check ups or anything and she just said “if it gets substantially worse come back”. From what I’ve seen online some people have had biopsy’s to diagnose, and I really thought I’d be given something like a leaflet and advice on what to do/ what not to do but I’ve had to use google to find any of this out.
It’s the way she told me so casually like it was a thing everyone has, after being worried sick for weeks leading up to this appointment that I may have LS, to then be told I do have it and it just being like “oh yeah you’ve got LS here’s some cream, bye”
Since starting the steroids I feel so much better but I’m just thinking, is this it now?

Asking because yesterday I went to the farmer's market and I met a lady who is all into that. I ended up buying a special balm made of beeswax and some native herb (when I looked up the name of the herb for skincare it just said it is gentle and is good for skincare as well as eczema but nothing about LS). Wondering if anyone had negative/positive experiences in trying natural skincare for the vulva.

I will also keep you guys posted on the balm I used; since I haven't had a flare-up in months since I went on clob I haven't felt a difference but I found it nice and moisturizing (and gentle).

Hi everyone, just wanted to ask a question about LS skin patches. When I was diagnosed the the white skin I had was smooth and on the left side of my vulva close to my vagina. I now have noticed my left inner labia is becoming bumpy and white, starting to develop a white patch. this is so different from the other patch I had. My doctor also only prescribed me to use clobetasol 2X a week but because the LSis still spreading I feel like I should be using it more often and I am going to ask about it. Does anyone have any thoughts, opinions or similar experiences?