Lichen Sclerosis

[Galdownunder]

Hi friends I’m 99% sure I will be diagnosed with this tomorrow. I have a GP appointment for tomorrow but wanted any advice or experience people have in dealing with this? I also have Hashimoto’s disease which may have a hand in setting off the LS. Thank you in advance.

I was finally diagnosed about 6 months ago after 4 visits to 4 GPs and then a private referral to a gynaecologist who said it was the clearest case she’s ever seen 🙄 No other health conditions, was prescribed dermovate ointment and it has been life changing - used twice a day for a month and then once a day for 2 weeks and now a few times a week with a top up if needed.

hope you get it sorted OP

It’s mostly around my anus (sorry). I’m so mortified but I really want a solution too. Did you have a biopsy? I can’t imagine anything more painful right now.

I have this too. Had never heard of it prior to being diagnosed with it. I wondered if it’s to do with birth trauma? I had a biopsy yes

No need for biopsy in my case. I had vulval and perianal disease on diagnosis. I also had several GP visits before I got a referral. First dermatologist I saw said no abnormality and I had to go back and get another referral to a gynae Derm specialist. Dermovate was fabulous. Such a relief. About 15 years in and I rarely need to use it but I have some in case if I have a flare up usually from excessive cycling.

Hi could u please tell me what your syptoms are im really suffering down below but keep being fobbed of my drs

You can’t miss this abnormality thankfully. It’s going down on to the very tops of my thighs between my legs too - white patches of skin. I sort of thought it was intertrigo when it was just between my bottom cheeks but now I’ve seen my legs… Anyway hopefully a resolution tomorrow. With no needles please!!!

It started like eczema between the cheeks of my bottom which is now inflamed and very sore on one side. I think I scratch at night. No problems on my vulva etc (that I can see!). But a few months ago I noticed when I have sex that it can feel like my vagina was sort of tearing. Which I put down to menopause (I’m 52 and post menopause). I’m deeply shy so horrified I have to go and show the dr this but I’m also really wanting a solution. I hope you feel better soon too.

Thank you for your reply i think i need to go back to drs like you i suffer with soreness on my bum cheeks but also on my vagina lips its worse at night and often wake with blood over my pjs do you have white patches as im not sure i do

Yes defined white patches on my legs

I was diagnosed with it by two GPs however when I saw the gynaecologist she said absolutely not. So don’t assume until the pro has seen it!

id been using strong steroids for no reason.

Good luck x

Did they do a biopsy? I ask because the gynaecologist who I saw to do the biopsy said she didn’t think it was lichen. But it was proved to be after biopsy.

i had never even heard of this condition. Apparently it’s very manageable but not curable. Don’t give up faith OP you’ll be ok

No, she said it wasn’t needed and symptoms did resolve in the end.

It has taken me over 2 years of being fobbed off and being told I had thrush before being sent to a gynaecologist. He said it was lichen sclerosis and prescribed me dermovate which didn't really work so I went back and was told it could be lichen planus but would need a biopsy to be sure. I had that last Friday and am currently laid on my bed in great pain wondering when my vulva will be normal again 🙃.

I found the dermovate wasn't really helping so I have been prescribed it but including neomycin and nystatin which does seem to be working.

My advice to anyone suffering with itching down there to keep on at the doctors as I kept getting told I had thrush and could've started treatment and whole load earlier.

Dr confirmed it is LS with just a quick glance it was clear as day apparently. She has given me some ointment and a referral to a dermatologist to look into immunotherapy. I’m pretty sad as I already have hashimotos which can make me feel like shit. Now my bum and vag is a hot mess too. Hopefully the pain and rash eases soon.

Hello, I see that whoever experiencing LC are all adults. Unfortunately my 9 year old daughter is diagnosed with LC from last year. She is on Dermovate, there is definitely improvement, but skin on the top of the anatomy is stuck together and has not separated, atleast not yet. Heard any case in children or is it very very rare ??