Just Diagnosed Lichen Sclerosis

Lichen planus and lichen sclerosus are different. The biopsies show different cell structures, though it is possible forthe same person to have both diseases, and some unlucky people ( women and men too) get other auto-immune diseases as well.

I had LP on one leg, my body, one arm, scalp , nails and mouth but not on the vulva, and soon after that lot more or less went, guess what ? - I got LS on my vulva....yes, hit the jackpot !

The main symptom difference in our private regions seems to be that LP affects the vagina itself, though the external appearances might be slightly different too.

Whatever these things are called, they are just horrible.

The Chinese have had some good success in curing/ getting remission using ultrasound.

Sue, help yourself by bathing frequently in warm, not hot, water. It needn't be deep, just enough to sit in. Oil helps. I add few drops of E45 bath oil to the water. Don't use soap. No perfumed stuff.

If you are getting burning or soreness when you urinate, pour or spray warm water over the area at the same time.

Pat dry or blow dry. Protect the sensitive skin with a thin layer of vaseline after you are completely dry.

Give your underwear an extra rinse after washing.

Tell your hubby how you are feeling. You need his support.

It is hard to cope with this by yourself and friends can be embarrassed.

Take care all.

Joodie

Hi Joodie

It sounds like you know a lot about these conditions - 10 years ago when I had my smear test done, the dr said that I had an erosion on my cervix and I bleed during smears so she thought it may come back abnormal which it did. I had to go to the hospital gynae for another which thankfully was normal and has been since. I'm now wondering if the "erosion" was a sign of the LS or LP? Can I ask if you or anyone else you know with these diseases have had to give up work? That's my fear, in case it gets so bad that I can't work - I seem to be getting a bit of relief from it just now though. x

Hi Liz.

I have learned a lot about this disease from the internet and from a large US based forum.

I think the experience, tips, information and advice pooled by sufferers of LP and LS are often more valuable than what some of the medical profession can offer.

To me it is a skin disease anyway, and not actually gynaecological, but in the UK there is a shortage of dermatologists, though not apparently for botox etc!

I've never heard of anybody having to give up work because of it, but I have heard tales of endurance. Even sitting at a desk all day can be intolerable, especially in a flare-up, but such is the private and very personal nature of this affliction that sufferers don't like to chirp up about it ,and suffer in silence.

Your lesion 10 years ago - well, many have said that after being diagnosed they have wondered if they have actually had it for a long time, so you never know - nor will you now, but you do know that with smear tests abnormal ( pre-cancerous) cells are often found then later they have gone. Our bodies are constantly being infected by organisms and fighting them off.

Nobody there has ever mentioned getting LP on their cervix, though many are distressed about their sex lives.

I am lucky as I had a hysterectomy for early stage cervical cancer when I was in my thirties....I am retired now - lucky because it was discovered when I was having another problem investigated so it was caught early, tg.

I think you are managing yours from the sound of it, but as you no doubt aready know it can suddenly come at you again from left field as they say.

You take care. x

Joodie

Hi Jodie Thanks for your reply its really helped I take a short bath every evening when I get home from work, ive also started using the clob every other day and things (dare I say ) seem a little calmer. Im still having the occasional wobble and sit and have a cry

but is all still very new

Thanks

That's good, Sue.

I don't blame you having a cry. It's an unkind disease to put it mildly. I've had it for about 9 years and I still can't quite believe it. You couldn't make it up, could you?

Try to stay in the bath for at least 10 minutes till the water turns tepid.

Big HUG for you and anybody else who needs one. x

Hi Joodie How old were you when you found out you had it I was 60 last month but looking back ive probably had it for about 3 years I had my thyroid removed about 4 years ago so im thinking this may have some connection.

I dont know how anyone would say they had LS if they didnt, I wouldnt wish it on my worse enemy

Thanks for replying it helps alot

Sue

Hi Sue. You are a mere Spring chicken, lol. I am 74 years old. I was about 65 whenbI got this LS and I'm pretty sure it is connected to the hormone drop coming off HRT. Mind you at the time I had been going to the gym and suspected I had picked it up there. It's amazing what goes through your mind when you are alone with it and don't know.

I would say your thyroid removal is connected all right. Others are always saying their LS or LP is connected to hypothyroidism and synthetic hormones. I read somewhere that LS sufferers have a one in three chance of having underactive thyroids. At least you don't have to worry about that one now.

Any kind of hormone change is highly suspect.

Yes, LS is the pits all right. I remember discovering it might be for life and being utterly dismayed.The only good thing about it is that it teaches you to do a stylish sort of cowboy walk, lol.

Seriously, it is horrible to be alone with. I got/get support from yahoo groups lichen sclerosis dot com. It might not be your cup of tea but it's more private than here , and has lots of pooled knowledge ( but no cures, sigh )

You will gradually find the best way to cope with it, Sue. You are making headway already. Life will still be sweet, promise.

Take care.

Joodie.x

Hi Ladies

I was 47 when diagnosed two years ago and I'm dreading the menopause in case things get worse, thought I might opt for HRT. I've tried the Propolis cream I got and will persevere but it's a bit stinky! Also just received Emu oil this morning, my clitoris fused so will see if this helps. I'm still getting some new rashes with the LP, but can usually attribute it to something I've eaten - so hard to be 'good' all of the time. It's not nearly as bad as some photos I've seen of it though, so hoping I'm not going to get it too bad just now. It's great having this forum to read through everyone else's situations and discuss it all. Keep talking and thanks. Hugs to all. x Liz

Hi Joodie will try Yahoo but will still keep intouch on here, you sound a lovely lady. I also feel very alone as Im nursing my husband at the moment.

Sue

Liz you have got me laughing at you with your stinky propolis. You won't likely be put off the emu oil after that then, lol.

I don't know if it will help unfuse your clitoris though, as it's really good at keeping the skin sof tand supple and less likely to tear or hurt - but the thing for unfusing is oestrogen, that's if you can get a UK doctor to prescribe it. It's not safe for people with certain conditions, which lets me out, yet a respected US physician, who has LS herself, says used topically in small amounts it will do no harm. Usually it is used along with a smaller dose of testosterone. The Oes. unfuses and the Tes. strengthens.

Sue, I looked up myeloma before coming on here tonight and I can see how much you are coping with. I'm sorry your husband has got this and I expect you are putting him first, so it is doubly hard for you.

Is there a myeloma support group in your area at all?

There won't be an LS support group I do know, but at least we can come here and give each other a bit of support. There must be others too who are alone with this affliction.

Hope you all are having a calm non itchy night. It's goodnight from me. x

Hi,after being misdiagnosed as having thrush for 30 years i was finally referred and, yesterday, was told that i probably have LS - for 30 years!!!!!! I will have a biopsy next week to confirm. I feel so angry that this has gone on so long without a correct diagnosis. I knew what it was before my GP! xx

I know how you feel, I saw two different GP's at my medical practice and one asked if my rash could be fleas and the other gave me a prescription for scabies treatment, even though she said it wasn't that - she just wanted to rule it out. They obviously never read my notes or surely they would have linked it to my hospital diagnosed lichen sclerosus. I had to make the link myself. What a waste of money training GP's, they fail to recognise anything. I hope you get relief from dermovate and dermol lotion for washing with. I have tried Propolis cream instead of the steroid cream, but for me the steroid cream works straight away and nothing else does.

I have LS, I don't have much of the redness/soreness but most of my vulva/anal areas are turning white and it makes me very sad. I feel disgusting and embarrassed and I don't know what I am supposed to do. I feel like I will never have a boyfriend and never have the chance to have my own family. I hate it.

Hi there,

How long have you had it? The way you are feeling sounds all too common - I think we all go through times of thinking like that and I take it you are young if you are worried about having children? It may not get too bad, I was diagnosed 2 years ago, (I think I had it for a while before that) and even though I've had tightness and fusing, I can still have intercourse. It's tricky sometimes and we have to give up, but not always. I have to put cream on straight after but by the following day it feels better again. Hope this info helps.