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.

Update: New GP said it was just stress related dry skin and that I need to stop applying Dermovate ASAP and only use vaseline . She said that the original diagnosis was too severe, and there was no way I would have recovered so quickly.

Currently in a battle to see my blood tests as my app doesn't work like everyone else's apparently and not showing half the information!

Well done on the downgrade diagnosis! Must put your mind at rest.

Yes, I'm very very relieved. Was almost like a life sentence!

Hi my DD had this when she was around 7. She was referred initially to a paediatrician who had only ever seen 2 or 3 cases in her career, then referred to a dermatologist who had seen loads of cases. She was prescribed steroid creams, getting stronger and stronger to keep the condition under control. We were told when it starts in children it sometimes burns itself out after puberty and fortunately this happened to her. She is in her 30's now and has no further problems.
You need to see a dermatologist.

I have it in my hair, behind my ear and on my arm as well as externally in my pubic area. I had had symptoms for a couple of years but it was only diagnosed after I got a patch on my arm. I also think that I had some on my back at the start but that hasn't recurred.

Mine clears up in 24-36 hours after I start using the dermovate.
So I would remain cautious about both your diagnosis and also the subsequent retraction.

We'll whatever I have has come back with a vengeance around my neck and around my eye. I'm not putting cortisone on my eyelid though, so waiting for a call back.

Sorry to hear it's back. I know there's a bit of a shingles epidemic going on at the moment with the strain being hard to get rid of. Might be worth checking if it might be that? Good luck, maybe you are stressed and it's triggered it and it will go away again, fingers crossed.

Seems antagonistic and inflammatory to diagnose as a life sentence. It’s a totally manageable condition. Doesn’t need to be dramatic.

I am waititng to see dermatology for possibly this. I have been suffering pain and itching for years and have finally plucked up the courage to be seen.
Is there any relief on the meantime? Anything I can wash the outer area with as I don't like to just use water but if I have to so be it.

Thanks

Hi sunshine, I was prescribed Dermol lotion but you can buy it in chemists too. You can use it as a soothing cream and also wash with it. The only thing that really helps with the itches though is a steroid cream which I've used for several years now. Hope this helps

Thankyou @LadyAlariasTrumpet i will get some of that to wash with.
Am I right in thinking I will have to wait for dermatology appt to get steroid cream?

Well GPs can prescribe Clob / dermovate so I wouldn't suffer in silence.

I get the cream from my gp first but I also see a consultant now for yearly checks x

Thankyou, I am so annoyed I left the pain and itch this long before being seen.

Any other tips to soothe the area?