Lichen Sclerosis - concerned, and want some advice

[keepingitquietly]

Changed my name for obvious reasons.

LOng story but have been sore down there for weeks. Treated for thrush, bacterial infection (no improvement on either)today doctor diagnosed Lichen Sclerosis.

She was a very young doctor and clearly wasn't quite sure whether it was or not(she diagnosed on the basis of the previous more experienced doctor putting it on my notes as a possible explanation for what might be wrong)

She consulted her medical books then gave me a Hydrocortisone cream of 1% and told me to apply it twice a day. No other advice - because I think she wasn't sure what advice to give.

Anyone suffered from this or seen a dermatologist/gynae about it and know more. Is 1% right amount - too much, too little. I feel I'm in inexperienced hands at the moment. These are my blooming bits, we're talking about and I don't want them to be mismanaged!

bumping, just in case anyone else out there

how strange! I have just posted about my daughter having something wrong with her, and according to a website it is more common in people ho suffer what you have, never heard of it til then!! I will try to look for the web page and put it up for you

OK you need to get referred to a gynaecologist. A good gynaecologist is just fabulous and you will feel much more confident in your treatment plan.

Your GP sounds like she Googled it.

I had SUSPECTED LS so they took a biopsy. A proper gynae did the biopsy and got it properly diagnosed. Actually it WASN'T LS - they still have no idea what it is but I have a knackered vulva that is a mystery to medical science (so far).

BUT the biopsy would have shown LS if it was that. Having said that, a lot of 'undiagnosed' vulva irritations will clear up with steroids. As long as you aren't allergic to the steroids, in which case they will all sting to high heaven and you will want to put your rear end in a bucket of cold water.

wish I could be arsed to name change but too lazy

anyway a cracked bleeding fanny is nothing to be ashamed of

morningpaper - That made me laugh and cheered me up. Thanks.

Will get myself off to a gynaecologist. If I start on the steroids will that then mess up the biopsy?

Did they sort you out?

Also, does 1% steriod cream twice a day sound about right to you.

thanks bethanner, fiofio.

Hi - I have this. But my doc keeps telling me it's usually in post-menopausal women, but I know I've definitely had it since Childhood.

Basically, itching there, skin cracking. Finally complained enough to have a biopsy but then they biopsed the wrong bit and said all was fine! So, I complained again and had another biopsy and BINGO, it was LS.

Since have had the steroid cream and to be honest it has all but gone! I have discoloured purple bits from skin damage but no more itchiness - not often anyway!

I went to see a specialist in it recently and he said I have no more LS than most women of my age and if it comes back just to starting applying the cream again and get an appointment to see him.

KTurner that's so interesting, thanks. I am tempted to ask for another biopsy to be honest: symptoms of cracked bleeding skin sound so RIGHT. I did find the biopsy pretty horrid, although having it swabbed with alcohol was actually the most painful bit - I said "FUCK ME oh sorry about my language JESSSUSS sorry FUCKFUCKFUCKFUCK gosh I'm so sorry".

So far I've reacted to all the steroid creams but I have an appointment with the allergy clinic who are hoping to find a steroid that I'm not allergic to so can try that.

It would be SO LOVELY to have it clear up, I must admit, although I've kind of got used to it now.

I've checked my bathroom cabinet and I have a variety of steroid creams varying from 0.05% - 2%. Twice a day sounds about right for the first couple of weeks.

I would give it a try anyway - no harm in it. It will take a few weeks for a gynae referral and by then you should know if it's helped or not.

Good luck fellow minge mange sufferers!

You need stronger steroids m'dear is what I would say (after 30 years of having this, and haunting all the LS forums on the net(there are two good ones)). Apart from being bloody uncomfortable, this disease can cause loss of clitoris, stenosis of the vagina so that sex is impossible, and increases the risk of vulval cancer. You need a dermatologist or a gyn, not a GP. Ask on the LS forums for the name of a good one.

MP - they swabbed me with VINEGAR. Apparently it causes the skin to pucker up, hence making the LS affected bits much more obvious to the scalpel wielder.

Your minge mange really does sound like LS, doesn't it?

Oh, anal fissures, forgot to mention them ...

my gynae (who specialises in LS - had to go out of area), said he didn't think I'd be able to have a vaginal delivery as there was narrowing of the vagina because of it - but I did ... and now there's certainly on narrowing!

He also said there's hooding of the clitoris, but it did take me 10 years to be diagnosed.

Morningpaper - I actually made him circle my affected areas in pen so he knew what to biopsy in theatre, LOL. There was no way I was going down there a third time!

Surroundedbysnot - what do you find is the best cream?

Unfortunately my DS has been diagnosed with BXO which is also LS and has had to have a circumcision as it fused his foreskin - but they managed to remove it all and he's okay now.

NO narrowing I meant!

Oh anal fissures, I could write a BOOK about them.

Golly you really want to jump off a cliff with those!

I have googled images of LS CAN I ADVISE AGAINST THAT????????? It took me on a hideous journey that encompassed vaginoplasties, labioplasties and then I really had to turn close down internet explorer before I went quite, quite mad.

and vinegar

narrowing hahahha

no danger of that

Feel a lot better for that chat.

Will resist giving you the nod if I see you on other threads and asking how your fanny's doing!

Thanks everyone.

Posts crossed there - a whole lot of chat about vinegar and nasty pictures that thankfully I missed. Am really off now.

Oh KT your poor DS! Mine is going the same way. There is definitiely a genetic component to this disease imo FioFio

KT - Trimovate plus some oestrogen.

Yes, my aunt has it too although I'm not sure if hers developed later in life than mine. I was 26 when I was diagnosed.

S-by-S, I will definitely write that down and mention to my gynae if I ever need to go again - thanks.

It's great to talk about this here, no-one I've mentioned it to has ever heard of it!

Fio - what does it look like on your back?

i think there's a specialist vulval clinic at one of the east london hospitals (royal london?) - can't remember his name

ooh this woman looks good:
Wendy Reid is a consultant gynaecologist at The Royal Free Hospital in North London. Miss Reid has a special interest in pelvic floor problems, prolapse, childbirth trauma and especially, vulval disease. She is a council member of British Society for Vulvovaginal disease and a member of the International Society for Vulval Vaginal Disease.

OK, firstly, don't google pictures of LS. They are taken from LS men and woman from Australia, Germany; Countries where Dermovate is not important and more of a holistic approach to treatment is used. LS is a mutant genetic mutation with, as yet, no known cause. It happens in men and Woman, babies, pre pubescent children and more un common, post menopausal Woman. It is a life changing disease, and the best treatment is cortisone steroids. Also make changes to your hygiene routine and get rid of all soaps, Use derma shower products, derma creams, replens and a fantastic lubricant called, 'YES'. I was diagnosed six months ago, was devastated to see how quick my labia had disappeared and vagina narrowed. LS is an incurable disease, but we can live comfortably by making little changes. Don't let it defined you and lots of hugs.