Lichen sclerosus / lichen planus experiences

[naturemumma]

Has anyone been diagnosed with this, or even misdiagnosed? What was your treatment and has it gone away? Sorry for the long post!

I went to see a gynae this week - have had quite a bit of itching down below. Not hugely intense, but a bit irritating. I had a look and saw what I thought was angiokeratomas fordyce spots and the skin looked a little paler than usual - not hugely, quite subtle. I didn't think too much of it because my lips (on my face!) are the same and I've lost a fair bit of pigment on / around my lips with a small amount of vitiglio.

Anyway, I have always had a little bit of itching in that area and I think am sometimes a bit rough when I have a wash to ease it a bit, although I know that it usually makes it feel worse. Sorry for TMI. I actually thought it was more like dermatitis as I've always been pretty sensitive in that area with anything scented etc.

When I went to the gynae he said it was lichen planus, but really doesn't look like it from what I've seen online, and a small patch of lichen sclerosus. He said that overall it looks generally healthy down there. He's prescribed me with dermovate for two weeks (once a night) and then two weeks (every other night) and then two weeks with nothing. Then I have to go back. He said that if it works then I wouldn't need to carry on with the steroid.

From what I've read it looks like there should be a maintenance dose each week, but he said not. I'm now wondering if the diagnosis is correct. Is it possible to be wrong? I don't know if I've caused it by itching a bit too much. But I'm also nervous about not continuing with a maintenance dose, as I don't want to increase my risk of vulval cancer (any more than it does by having it anyway)

Any experiences / thoughts / misdiagnoses? TIA!

Hi Op

You are totally within your right to have your own thread on this of course, but I just wanted to let you know that if you search these conditions, there are some great threads on them with loads of information.

My 6 year old DD has been diagnosed with (potentially) having it, but they are monitoring it yearly before they confirm. So I can't be much help, sorry.

I was diagnosed with LP. Excluding anything sinister, the treatment for a lot of similar irritating conditions, like psoriasis (my earlier dx), is a prescription steroid cream. My dentist knows and keeps an eye on my mouth (no lesions there yet) but really it seems like the only thing to do is use the cream to alleviate symptoms.

Op has anyone said anything about a biopsy?

I’ve had both. Lichen planus on my legs, lichen sclerosis on my vulva. I’ve got steroid cream for the LS and it works brilliantly to be fair. The LP was crap for ages then just went away and never came back! The LS comes back occasionally when I’m stressed or exhausted.

I don’t know if that’s helpful or not 🤣

No biopsy, the gynae said there was nothing sinister looking so no biopsy needed, although I've heard that LS can be diagnosed with a biopsy, so not sure if I should push for one. You're right about that with the steroids - it seems to be the treatment for most things down there so I'm hopeful it'll help. Thank you :)

Thanks @ironhelp I've seen a few threads, but have noticed some more popping up at the bottom of this now, so will take a good look. It's interesting that they're watching and waiting before a definitive diagnosis. I guess it goes to show that it's not always clear cut.

Thanks @Iwouldlikesomecake that's really interesting - especially the bit about stress - I've had a fairly stressful couple of months so it makes me wonder if that's a factor.

Do you mind me asking what you do for the cream. Do you keep using it every week even when the symptoms aren't there or do you wait for a flare?

How old are you? I've been misdiagnosed by a GP. The steroid treatment still helped but it was actually estrogen deficiency caused by early perimenopausal changes. I have a topical estrogen cream which has cut back the steroid use hugely.

That's really interesting @WombatsAndGumTrees what were your symptoms? I'm 39 and have been having quite a few menstrual cycle troubles. It was just before my last period that it got really bad and cycle was so long (50 odd days, which is unheard of for me). I wonder if it's related in some way.

I'd personally push for a biopsy. I got diagnosed with both.

I was prescribed with a steroid cream and I wouldn't know I have it now.

Additionally I got diagnosed abroad and they said the UK is notoriously bad at keeping on top of it when a woman is diagnosed, so I'd also push for ongoing treatment

I am diagnosed with LS, by the GP and did not have a biopsy or see a specialist.
the dermovate works well though so that’s reassuring.
I use it every day at least once if I have a flare up, then once or twice a week if it’s fine, this was the advice from the GP.
mine is also aggravated by stress.
I initially thought it was vaginal dryness due to peri menopause so demanded topical estrogen, but not the case!

I've sent you a PM rather than post too much here. :-)

Diagnosed with LS a year ago after a biopsy. Also have Raynaud's and a little rosacea so it seemed logical to me to boost my immune system (all are auto-immune conditions). I use dermovate twice a week and also topical oestrogen, both prescribed by my gynaecologist. Additionally I see a functional medicine private GP and, under her guidance, have given up gluten, sugar and alcohol (inflammatories) and take probiotics and probiotics. This cleared up all sorts of issues with my gut which was a collateral advantage.
Finally, I have been on a private prescription for Low Dose Naltexone for several months. I haven't had any problems - no itching or further deterioration, still got a good sex life.
It might not work for everyone but it's worth being proactive. It's a horrible thing when it gets a hold.

Naltrexone

Actually, I know there is quite a lot of
other threads on this subject, but it really can be difficult to find out about other peoples experience of this, and I am only just beginning to think that I might have it too, so if you do have further experience/information could you please post it here. Many thanks Wombats 😊

Thanks so much @IYKYK - do you use a maintenance dose of steroids each week?

I got this down below during menopause- horrendously itchy and sore and justwent after about3 years- but for awhile it was awful- killed any interest in sex too for me

Thank you :) I really think that stress is a big part of it for me - with all kinds of things. I guess it should be an incentive for me to get my stress levels under control! I'm glad that the dermovate is working for you.

No biopsies here. Just use the cream when it flares up and I don’t use it when it goes away. I’m quite sparing with it as I know long term steroid use isn’t great.

It is also possible I have mast cell activation syndrome so I personally think mine is linked to that.

That's so interesting - thank you! I agree with the being proactive. I've started doing some fasting (for other reasons), but it says it can help with autoimmune diseases, so I'll be interested to see if it helps with this.

Gives me some hope that sometimes it can resolve!

Thanks @Iwouldlikesomecake It's interesting how there seems to be links with other health issues. I had read that it's more common in people with thyroid problems too.

I've found it quite hard to find other people's experiences. It seems like there isn't a standard way of diagnosing or treating it either, which is quite confusing.

Grrr, Unfortunately I can't blame bloody autocorrect for my is on my first line, when it should have been are, it was totally due to my useless brain... 🤷‍♀️☺️

A need other people’s story’s or anything on this! So I noticed shortly having my last child 4 years ago my downstairs area started to turn whitish. Not over time it had gotten worse but not bad bad if that makes sense? I thought it was just my body changing after having 3 kids. Anyway time went on and I completely forgot about it. Around a year or so ago I started getting a bit itchy down below in all areas. I thought it was down to shaving either iv not shaved and it’s gotten too long and irritating or it’s the hairs growing back so I’d shave! Now I would be so uncomfy down there and would use sudocreme after shaving and things would be fine. I go to my dr to get a coil fitted the other day and she noticed the white skin around my clitoris and a little bit lower too. She’s given me steroid cream which has help LOADS! Literally haven’t itched once since having it. But she’s referred me to the dermatologist for a biopsy. I’m TERRIFIED. I already have anxiety as it is and now this is scaring me Incase it’s cancer & that the biopsy is going to hurt. I know loads of people have this but I just want to hear other peoples story’s and how they deal with it all. Does the skin ever go back to normal colour? Was your biopsy completely fine? & did it hurt?
sorry for the long post. I’m just panicking!