Lichen Sclerosis - anybody else?

[chatenoire]

Someone suggested I post here.

Got diagnosed after two months of symptoms. Reading about it, it looks like it's hard to get diagnosed?

It all started with my anal area and then moved to my top vulvar area. I have good days and bad days. I also have some behind my ear (but that seems to be extremely rare) so I'm starting to wonder if I have been misdiagnosed?

I'm also not menopausal, I'm turning 40 in a few months

Tia.

Hi tia

i posted on the other thread.

just sending a message to wish you luck, I hope you find the advice you need!

also just to check, are you sure your not peri? I’m not yet 40 but have been diagnosed with early menopause and my issues (not got a diagnosis so can’t say it’s definitely lichen) started around the same sort of time as I started to notice things that eventually turned out to be because my hormones were out of whack ie peri/early menopause. Just asking as 40 doesn’t mean your too young it’s just rarer.

https://www.menopausematters.co.uk/forum/index.php

this Forum will have discussions for you to read. I found a few helpful when my vulval systems were driving me crazy!

just because it so commonly occurs at menopause

Thanks I'll join that forum. I just noticed that the dry skin is spreading to my face. Which is most certainly a common symptom. Given I don't have the white patches either, I do wonder if I really have LS

I was recently given steroid cream for what the doc thought might be lichen sclerosis (at 39). Has helped A LOT but when I stop using the cream the symptoms come back. Symptoms are severe itching, some swelling.

I suffered for a long time with what I thought might be lichen sclerosis, it was vaginal atrophy and cleared up with vagifem pessaries. Thank goodness.

I meant to say that my face symptoms aren't LS, not the opposite!! And that's the thing. I don't have severe vulvar/vaginal issues. Yes, they itch but the main issue is my anus and buttcheeks!

Sounds awful, maybe worth going back for a second opinion? It will drive you crazy otherwise

I was mis-diagnosed with it.

If the places you are getting sore skin are your face and around your rectum, I'd consider a low level food allergy. I have some serious food allergies that give obvious anaphylactic reactions but I'm also intolerant or mildly allergic to other things. If I eat them by mistake I get sore skin around my mouth but also other facial skin, and I get itchy sore skin on my bum too.

Did they do a biopsy?

No they didn't... She looked at my vulva and anus and the ones around my mech and ears. The face one hadn't developed by then.

I had it. It was a nightmare. I didn't seek help for about 10 years. I constantly googled my symptoms and finally found this. I took myself off to the GP and the diagnosis was confirmed. There is long protocol for reducing the treatment, which I followed. For two or three years I got flare ups which responded well to a day or two of the cream and I've been free for maybe 10 years. I'm nearly 68. Sorry you are dealing with this.

The fact it is now spreading to other areas would suggest you need to be seen again and maybe even a referral as well.

sorry it sounds miserable!

I'm actually quite convinced it's standard eczema. My cousin who's a dermatologist agreed when she saw the photos attached.

I have suddenly developed a new eczema patch on my head just above my ear. Nizoral shampoo has helped, as has urea cream - I got a strong (40%) one off Amazon. But the best thing is probiotics - Optibac is what I’m currently taking. It doesn’t clear it completely but gives about an 80% improvement. Not sure about the other symptoms but using moisturising pessaries has massively helped with itching and dryness. I’m 48 and on HRT.

and I think your advice is probably on the correct path. Originally I thought it was just hormone related skin dryness, then the stress (or maybe a mix of both).

I think an accurate way to describe it is similar to being aroused. In fact I called it my "sexy itch" with my DH.

I’m not a doctor but the ear pic looks like it could well be eczema

definitely go back to gp. Or ask your cousin actually as it will save weeks and weeks waiting to see derm. Cousin obviously can’t prescribe but can tell you everything else you can use then gp if they agree can prescribe anything that needs a script

In the meantime use an emollient to wash with rather than soap etc esp vulva as it’s a sensitive area.

I meant to say there’s a chance it could be seborrhoeic dermatitis (also known as seborrhoeic eczema)
it can affect all the areas you can have mentioned especially anywhere with hair scalp eyebrows pubic area and skin folds. Your cousin would be able to tell you much more about it than me but here is a link with some information

https://www.bad.org.uk/pils/seborrhoeic-dermatitis/

Definitely fits the description of my ears/face!

It's so funny I joined a couple of groups on FB around LS and I've told them that I really think I was misdiagnosed, and a good chunk can't believe that I really think I don't have it! Especially when I think about how this flared up.

I also keep thinking about Ockham's razor, surely given the symptoms it should be the simplest reason, right?

I was diagnosed with LS a few months ago, I had a definite white patch on my vulva about the size of a 5p, it went away with steroid cream but keeps coming back every so often. Started with very itchy skin round my anus, no flaking though, just red and the skin felt thin. I'm no dermatologist but your ear thing looks like something else.

That’s not how Ockham’s razor works. The razor is applied to proofs, not guesses. I’m sorry you’re suffering.

I'm all flakes down there now, and it's back to normal within 48hrs. Which is great! (Not complaining!) But maybe I needed weaker corticoids?

I have what they think is a variation on my back - they've suggested it's Blaschkoid Dermatitis but I've recently been told I have hyperthyroidism, so I might get it investigated with a biopsy to check (just found GP letter to me and it says I could get it biopsied but that was 2 years ago). I've had it since my mid 20's to be honest, so it's not obviously connected to peri for me but could be hormonal if thyroid I suppose. They gave me a prescription for a shampoo but I didn't get it because I can't afford £9 on a shampoo (tried so many creams over the years, I'm used to the itchy cycle and never revealing my back but want to know what is causing it more).

I've read it could be related to thyroid problems..I'm hypo, have been for the past 13 years. But my TSH is fairly low and thus under control.. so who knows!

I really think I've had low level hyper a lot of my life - swinging between anxiety and anemia and as I say this rash. As far as I am aware I've never had my blood tested for it before so whether it's never been at the "NHS level for concern" but borderline or what I'll never know.

Psychologically I spent a lot of my 20s and 30s feeling very ugly and dreaded summers. I've just given up with men in my 40s so I'm not as bothered by the appearance any more! I'm sure it's scarred and looks terrible but the good thing about it being on my back is I don't have the visual reminder (until it itches!)

Have you checked your ferritin levels? I'm iron deficient and normally get neurological symptoms, but you can gel all sorts of symptoms,. including on your skin..