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We want to hear from you: please tell us about your experience of the online community.

Lichen Sclerosis

Romaine

I have a few health issues, lichen sclerosis being one of them, do any other members suffer from this?

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Comments

JennysDad

Hello @Romaine, and welcome to the community.
I'm afraid I'd never heard of lichen sclerosus until I saw your post, but I've learned something about it from https://www.nhs.uk/conditions/lichen-sclerosus/
It sounds most unpleasant and very similar to a condition my wife suffers from (psoriasis), so my heart goes out to you.
I note that one of the recommended treatments/emollients is the same as were first offered to my wife - steroid creams and ointments - and I wonder what your experience of them has been?
Anyway, please keep in touch. I'm sure others who have direct experience will find their way to you through the community.
Very best to you
Richard

Pippa_Alumni

Hi @romaine, and welcome! I've moved this post into our Disabled People discussions so that others have a better chance of seeing it.

karrie

Hi Romaine l have lichen sclerosis I've had it about 12 yrs now, l went into hospital for a check up for something else , when l awoke l spoke to a different Dr who said l had LS and he had operated on me and removed certain parts down below (I've forgotten what he called the parts he'd removed ) but he said they were white and inflamed with LS and he had done it now to save me having to go through it at a later date , I've had flare ups were l blister and sore ,but l use germolene and l find this helps quicker than the steroid creams .

OutOfTheWorld99

Hi, I also suffer from this and are male. Apparently, it's quite uncommon in men. Agony when this flares up, I am due to be prescribed some steroid type cream and hope to god this disease doesn't turn into anything more sinister.

jake4dsm

I too have been suffering though this since 2007. Mine did turn into Cancer which I had radiation for. They have me on Clobetasol and have me using a yeast infection medication topically. I have flare ups which make me bed bound. I have done lots of research for this because nothing helps. I have cut most of the sugar out of my diet.

OutOfTheWorld99

Hi Jake4dsm,

Very sorry to hear your diagnosis of Cancer due to LS.Something I am now in constant fear of despite the risk stats being very low. Not logged in here for a while.LS is a horrid condition and my experiences so far when dealing with medical staff on this is not too sympathetic when dealing with males. They fail to acknowledge the pain that is felt by men with this condition when inflammation is present or other associated effects. It's obvious from my own experience, that when inflammation occurs mainly caused by friction and movement also brings on effects from any further movent-like repetitive pain. In my case, LS being predominantly in the genital area, can be a real problem and I no longer look forward to walking miles as I once did. So far, I am not on steroid creams but maybe soon at least as a precaution for when the condition does flare. Also, have an added complication with urethral stricture. And yet, I am perfectly fit and ready for anything. I feel not.

Stay strong

Out of the world.

kate35

Hi i have LS i was diagnosed in 2011 and have had little to no help with it sometimes the pain is unbarable xxx

Chloe_Alumni

Welcome to the community @kate35, sorry to hear you are in so much pain.

Charmed1975

Hi Romaine, I too am new to this site and have LS and a few other conditions, I was diagnosed last month and am currently taking steroid ointment and hydromol. I thought that steroid ointment couldn’t be used over a prolonged period of time but been told to use this every night, can anyone advise of their experiences? X

Ross_Alumni

Charmed1975 said:

Hi Romaine, I too am new to this site and have LS and a few other conditions, I was diagnosed last month and am currently taking steroid ointment and hydromol. I thought that steroid ointment couldn’t be used over a prolonged period of time but been told to use this every night, can anyone advise of their experiences? X

Welcome to the community, I hope others will be able to advise of their experiences.

Charmed1975

Please can someone tell me as I have searched to no avail is Lichen Sclerosus classed as a disability?

Tori_Scope

Have you compared your experience against this list on Citizens Advice of what counts under the Equality Act 2010 @charmed1975?

Is there any particular reason why you're wondering? That might help us to know how to best answer your question.

Charmed1975

Hi thanks for the advice, I’m asking as I have a 1-2-1 on Monday with work and wanted to be as prepared as I can be

Francis07

Charmed1975 said:

Hi Romaine, I too am new to this site and have LS and a few other conditions, I was diagnosed last month and am currently taking steroid ointment and hydromol. I thought that steroid ointment couldn’t be used over a prolonged period of time but been told to use this every night, can anyone advise of their experiences? X

[Removed by moderator – Medical advice, recommending a certain medication/drug.] I am on cetraban ointment find it better.

L_Volunteer

Thank you for sharing your experience with us @Francis07. Unfortunately, this thread is quite old so I am unsure of the likelihood of the community members seeing and responding to your reply. However, your reply might still be useful for newer community members with similar experiences. How is everything for you at the moment?