lichen sclerosis

[SusyQ231]

Hi I have lichen sclerosis, does this come under the umbrella of scleraderma?

[Midgebite21]

Morphea is a form of scleroderma that causes plaques, from what I’ve just been reading lichen sclerosis is an autoimmune disorder of its own aetiology. It’s associated with autoimmune thyroiditis, alopecia areata, vitiligo, and pernicious anemia. However scleroderma sufferers are at a higher risk of developing lichen sclerosis. Think you’d really need to discuss with your specialist though.

[SusyQ231 in reply to Midgebite21]

thank you

[Elaine_Hayes]

Yes I have systemic sclerosis and was diagnosed with lichen sclerosis 10 years ago

[SusyQ231 in reply to Elaine_Hayes]

Thank you Elaine, although somewhat under control I find it very upsetting especially the problems and tensions it causes to do with sexual activity. I have read a bit about it online and it is a common problem with others.

[KatieAnna]

I have both, but Lichen sclerosis is a separate autoimmune disorder. Having it doesn't mean you have scleroderma, but having scleroderma means you're more likely to have lichen sclerosis. Good luck with the diagnosis.

[EOLHPC]

Maybe you’ve found it already, but the SRUK website has good info on Lichen sclerosus, so here’s the link:

sruk.co.uk/conditions/liche...

For what it’s worth, I’m nearly 70 & have been managing lichen sclerosus for nearly 20 years, probably secondary to my infant onset lupus which has scleroderma-like aspects. I also have oral lichen planus

[SusyQ231 in reply to EOLHPC]

thank you so much. I was aware of the site but for some reason couldn’t find specific info on LS so very helpful. I’m in my 70s too. It’s not good and I think causes strain on relationships too leading to anxiety.

Thank you.

[EOLHPC in reply to SusyQ231]

You’re v welcome…..& yes, so true 💞💞💞💞

[SusyQ231 in reply to EOLHPC]

thanks again for some reason it helps to know you’re not on your own x

[EOLHPC in reply to SusyQ231]

definitely! Being here on my HU community forums for well over 10 years almost daily has helped me hugely to keep calm & carry on…HU is a really great platform: the admins + support org staffers make sure we’re safe…if you’d told me 30 years ago that we’d have places like HU & people like those in our communities I’d have found it hard to believe..yet, here we are ❣️ call it solidarity, or companionship or whatever, it’s GREAT🤝🍀

[Elaine_Hayes in reply to SusyQ231]

Yes it is good to know that we can message other people who understand about this weird disease. Yes although I have a lovely husband, i do find it causes anxiety and a but of a strain on relationship

[SusyQ231 in reply to Elaine_Hayes]

yes I have a lovely husband but I have guilty feelings and anxiety. LS is like the elephant in the room, unable to talk about it.

Thanks for your reply.

[Elaine_Hayes in reply to SusyQ231]

I truly understand

[Catfun]

I have it too! Along with other autoimmune issues. My doctor told me stress caused mine. 1st husband passed when I was 54. Remarried at 61 and did not know until later, I married a narcissist. Going through ugly divorce. Did anyone ever have a rash like this during their Lichen flare ups?

Rash

[Verily in reply to Catfun]

As far as I know lichen sclerosus causes dark patches on the body as well as white patches but is more common on the genital areas. Xx

[Catfun in reply to Verily]

yes, it started in genital area and then a I got that rash on arms (mostly), legs, ankles and a small amount on my back. Horrible itching. I really don’t know if it was related. My doctors could not even figure it out

[OldTed60]

I have both conditions but don’t think there’s much link apart from if you have morphia scleroderma. Both autoimmune. Lichen sclerosis is a skin disease whereas systemic sclerosis is systemic. In fact my friend with severe and long-standing lichen sclerosis didn’t know it was autoimmune until recently when I told her. She has no other autoimmune diseases. I think it’s linked to hypothyroid and vitiligo and I have both of these too. There is a good U.K Facebook support group for lichen sclerosis.

[SusyQ231 in reply to OldTed60]

Thank you. I don’t use Facebook now but think I might try again just to join the group. Think it might be useful for me to hear how other sufferers cope.

[Intimeslikethese]

in reading your response and not knowing of this, I searched online and found an article written by naturopath Kimberley Porteous. She works with GP’s to deliver a natural plan for this condition. The article is on bondihealthandwellness.com

It lists several herbs and vitamins that can be made into creams to keep the genital areas good.

[positivedaybyday]

Hi,I had Lichen Sclerisis years ago which has eased over time. I did have 2 operations & now only have yearly check ups.

I was told at the time that it was an auto immune condition & probably linked to stress.

I was told that I could be open to other auto immune conditions.

I didn't realise how bad these could be until I was diagnosed with acute Diffuse Systemic Sclerosis in 2017.

I hope this helps. Xx