Lichen sclerosis with no itching..
Posted , 9 users are following.
Hi, I am new to this site and am desperately wondering if anyone has LS with no itching? I went to my GP early last year with a tiny cut and whilst examining me she casually announced I had a 'bit' of LS. I was given a fact sheet with a tube of Betamethasone valerate 0.1% cream. I have only used this occasionally and very sparingly on the white pearlised skin between my vagina and buttocks - I really don't know whether I should be using it more regularly. I still have no itching and only slightly sore around the vaginal entrance after sex. The white area does seem to have spread slightly to this area now though. Would regular use of this cream help with the white patches or would it be detrimental given that I barely have any symptoms? I'm so scared of doing the wrong thing and becoming obsessed with the magnifying mirror! Any advice would be welcome.
1 like, 30 replies
philly2 jill4444
Posted
Hi...hard to know what to do when you first diagnosed and the outcome, but I would also encourage you to keep up the treatment, which should probably be the clobetasol cream. Because, just as a warning - it seems the LS never goes away even with NO flare ups or itching. My story is that, very worryingly, I've only just found out from recent examinations in a vulva clinic - that I should have been using the clob regularly, even though I have'nt had any flare up for some years - the result is my anatomy has altered, I have almost lost my clit through fusing and one labia has almost disappeared. I was first diagnosed on 2010 (I was 63) with a bad flare up, abcesses, itching and pain. Took a while to diagnose, but when it was, I was put on clob, twice a day for a month, reducing to once a day and eventually twice a week, as the flare up calmed down. I then used it sporadically for a while, but with no discomfort or flare ups I thought it had gone. But the LS was clearly still there and doing its stuff silently, it never goes away.... Now the wonderful specialist nurse - the medics know much more about LS now - says I should keep on treating a couple of times a week as maintenance, probably forever.
But I am researching other ways of treating too, and finding this forum really helpful.
jill4444 philly2
Posted
Hi Philly2, that's terrible that you weren't told this in 2010. I'm not sure if I've been affected with any fusing as I really can't remember what I used to look down below anyway! I've never been able to see where my clitoris is anyway so wouldn't know if it's fused or not. Please let me know if you find out any more useful info whilst you're researching. I've been trawling the net too - have you heard if the emu oil is any good? I have been to see a close friend today who has the same thing, plus her sister (she is very badly affected by it). They also have another friend with it too so we we're thinking that this condition is probably not as rare as they say it is.
philly2 jill4444
Posted
Goodness, there do seem to be more people affected, or maybe they are just coming out of the woodwork - no one ever really wanted to talk about it before, though it has been around for decades.
I've only ever used Dermovate steroid ointment and aquaeous cream for washing - could also use Hydromol. And I've been using e-oil for softening. But have a look at the thread 'Progress' - there's more experiences there - and the Borax thread.
jill4444 philly2
Posted
Ok I'll check out that section now, thanks Philly.
Guest jill4444
Posted
jill4444 Guest
Posted
Hi, no I don't have that but I wonder if you have thrush as well which would explain the discharge?
Guest jill4444
Posted
I'm at work today , 😞, gonna go to walk in centre in morning, thanks for your reply. Take care x
jill4444 Guest
Posted
Hope all goes well for you today. I've been to the gp too this morning and got a referral which is in July so fingers crossed. Also she's given me ointment instead of the cream. X
Guest jill4444
Posted
Guest jill4444
Posted
jill4444 Guest
Posted
Crikey, the advice you had from the walk in centre wasn't good but at least the pharmacist was knowledgeable. My friend who has suffered with this condition for a few years also uses Sudocrem and said it is amazing so I should keep up with that unril it's healed. I bought Sanex zero the other day which has helped me feel cleansed but not irritated as with normal shower gel. On the gp's advice I am going to just use the clobetasol ointment sparingly on the white patches twice a week as maintenance. She checked my other bits and said all looks fine. I asked if my clitoris was fused as I wouldn't know as I've never known where it is anyway, hahaha! She confirmed it's definitely there and looks fine thankfully!
Wero jill4444
Posted
Yes Jill, it is possible to have LS without itch. I had insatiable itch and no
other symptoms for years. Strangely enough, when the white areas appeared,
the itching disappeared so anything goes. If you read through some of
the posts on here you will see that there is no cure but that the condition
can be managed. I also use Betamethasone at the first sign of a flare up.
This can be evidenced by just a small tear. Good moisturising is pivotal and
regular self examination for changes. Your GP should refer you to a Gynaecologist
or Dermatologist or even both, depends upon where you are in the world.
Good luck and don't worry, you are not alone.
jill4444 Wero
Posted
Thank you 2Wero, it's obviously a condition with differing symptoms and severity for everyone. My initial visit to the GP was because of a small tear, then I was told it 'looks like a bit of LS'. I think it's a shame there's not much more publicity about it. Recently there was a phone in on morning TV, a lady rang in for advice and the two medics in the studio only tried to calm the caller down by saying it's nothing to be ashamed of and gave no further details about the condition! There are probably thousands of women affected who are being wrongly treated for thrush.