Lichen sclerosis

[juliaw]

Hi does anyone else suffer from this condition. I was diagnosed last year after a biopsy. I am so fed up with it, as it is so uncomfortable and I feel I can't talk to anyone about it. Any advice would be appreciated.

[shirleyb313]

Yes i suffer with it and its vile .I cant give you any advice except to say I find dermovate is the only steroid cream that gives me any relief whatsoever.

[BritishSkinFoundationCharity]

Have you heard of lichensclerosus.org/ ? They might be able to help.

[juliaw in reply to BritishSkinFoundationCharity]

Thanks will have a look

[juliaw in reply to BritishSkinFoundationCharity]

Yes I have looked but it won't let me register.

[donna]

Hi I have Lichen planus ,vulva ,vagina ,throat and ears ...I was a bit like you WHO do you talk to ...as well as running around a lot of different consultants ,some if which are unhelpful!

I've joined ...UKLP.org.uk. There are people who suffer from LP and LS .

And also there is a new Face book page Lichen Planus Support...

I think you will get some people in the same situation as you ..

With best wishes x

[juliaw in reply to donna]

Hi I am so glad to hear I am not alone. I have it in my vulva and anus . I am so sore all the time can't use soap or bath products. Only relief I get is when I am in a salt bath. Thanks for replying

[donna in reply to juliaw]

Hi I have Sent you a PM x

[Anne0017]

Hi I went to Dr yesterday complaining of discomfort down below. She thinks I may have this and has taken swabs and referred me to a specialist. In the meantime she has given me some cream to try. I suffer with hypothyroidism and now this. I'm fed up with feeling rough.

[juliaw in reply to Anne0017]

I feel like I am being petty but no one understands how it effects your life and relationship. I get really bad moods when it's at its worst.

[Anne0017]

I've been reading up on it, some sufferers are raving about Emuaid whilst others say it does not work. I shall wait for the formal diagnosis and see what the specialist thinks. After Googling these symptoms, I can't believe how many people are suffering from it and yet haven't gone to their GP or if they have, have then been misdiagnosed. When I saw a different GP about 7 weeks ago she said it was thrush..even though she didn't examine me.

[juliaw in reply to Anne0017]

I was treated for thrush too. It wasn't until I saw a gynecologist for another issue it was picked up. I have been using Hydromol ointment for the last few days and the itching and soreness has improved. Got it from amazon. Worth a try.

[Liney]

I was diagnosed with this a few years ago. Awful discomfort, splitting and bleeding 'down there '. Effected my relationship too. Used dermovate and moisturiser but only gave temp relief. After a while I had a procedure called modified Fentons Procedure and it has improved my life hugely

[ebony4ivory]

Hi there. I was diagnosed 4 years ago with Lichen slerosis of the vulva after having a biopsy. I tried everything going from steroid cream to aqueous cream with no success. The condition spread to all of female parts turning my dark skin completely white. As you can imagine I freaked out.

I was truly brassed off as the effects of this condition meant I was always itching and in agony. My relationship failed as it was too painful and I just wanted to be alone. I couldn't deal with it so I pushed him away.

Last year I saw a dermatologists who suggested a different approach which consisted of injecting the whole area with intralesional Triamcinolone 10 my each side. I hate needles and this method was quite painful but effective. I had the proceedure every three months for a year. I was getting frustrated as improvement was slow and pain I was I was experiencing seemed worse.

I asked if there was another option for this procedure as I was struggling. I was offered gas and air while having the procedure which worked brilliantly.

The best thing of all is that my skin as completely gone back to its original colour. The area use to itch terrible but, now i wash the area with hydromal after each visit to the toliet.

I still have what feels like tingling in that area but improving everyday. I may not be able have a physical relationship as skin in that area has fused closer together but I am ok with it.

This treatment has been a life saver for me. I was so depressed beforehand but now things are improving. I won't let this condition define me.

I hope you guys find something which helps

Ebony4ivory