lichen sclerosis

[UCTD]

Has anyone been diagnosed with lichen sclerosis who also has a connective tissue disorder?

[moo196]

There's a great LS Facebook group if you search for it.

[LadyTrundle]

I haven’t, or even heard about it. But now I’ve read what it is, I’m wondering - so thanks!

[Oleander1]

Yes, I have had it for some years. At first I saw the gynae/dermatological team for diagnosis and treatment. I use QV gentle wash followed by Hydromol cream twice a day. Twice a week I use Dermovate steroid cream which I increase to daily when I have a flare up. Three times a week I also use Hyalofemme vaginal gel. Now I have got to a fairly stable condition I have to check with GP annually. This disease has made physical sex impossible which has been very upsetting. Fortunately I am in a very loving relationship.

[positivedaybyday]

Hi,Yes. This was my first introduction into immune diseases in my early 40's.

I was under a fantastic dermatologist Consultant at the hospital who did say at the time I could be open to other auto immune conditions.

Little did I know what I was in for in the future!

I wish I had researched this area at the time!

When I was 63 I was diagnosed with Acute Diffuse Systemic Sclerosis.

It was very aggressive & within months I was critical.

At the start of my Lichen Sclerosis symptoms, my doctor had referred me for surgery to help with physical relationships.

I had two surgeries to open up my vulva.

He stated that if he could help an 80 year old man with his issues then of course he could help me.

It wasn't until I had stem cell treatment for my Systemic Sclerosis that my relationships went back to normal. This is only ever offered if you have no internal organ damage, it's in its early stages & it's progression is super fast.

The Consultants are of the opinion this has cleared up my Lichen Sclerosis, though nothing has been proven.

There is still scar damage in this area but at least I can have a full relationship.

I hope you find some treatments to eliviate any issues. I did use dermovate in the early stages & plenty of lubrication.

[OldTed60]

I suspect I had it when I was younger along with Hidradenitis suppurativa - but was too embarrassed to tell anyone and I had no idea they were autoimmune diseases. Thanks to years on various immune suppressants it seems to have been mostly held at bay. Due to intense pain and some kind of nasty folliculitis I was examined by my dermatologist and referred for vulval biopsy in 2022. The biopsy was inconclusive and I then saw a gynae dermatologist who felt that I’d had LS with the bleaching but it was historic and the scarring might be systemic sclerosis or damage from 3 challenging deliveries. I struggle more now with nerve pain and rectocele where intimacy is concerned.