lichen sclerosis

Hi Joodie,

Rather than put a link in as you did just put the url in full which I have now done. We don't mind links to other specialised sites and will approve them if they are useful to other users. You can direct message each other in this forum as well, just use the message button.

Regards,

Emis Moderator

Thanks Emis.

Thanks Emis.

Hi Joodie,

My emu oii is supposed to be "pure" but very runny. It is supposed to heal skin and I believe this would be possible, if only I was able to go more than a couple of days without using dermovate. Thanks for your good wishes for a good night's sleep - hope springs eternal!! Take care!

Hi everyone. Thought I'd post an update. Still using smidge of Ovestin about every 3/4 days or so. Still using the Hyalofemme, although as I said, not as moist as I would like, so contemplating trying the Replens. Has anyone here used the Replens product? KY Jelly seems ok, and whilst it dries out quite quickly read somewhere to reactivate and make it slippery again, just add a few drops of water - which I did and it's okay. Still using Vagifem every 3 days. did manage to get the Dermovate down to every four days but then got a sore bump just to the side of my clitoris hood, about one and a half cms long, so used the Dermovate for two days, morning and night and it sort of cleared up. Been doing loads of research, reams and reams of reading. I haven't had a biopsy but the letter from the consultant to GP said LS. If things are settled when I next see her I don't really want to aggravate matters by having the biopsy, but if the bump is there maybe it would be a good idea. I personally don't have any white areas or white spots. But as Horses said, clitoris has disappeared, one of my inner lips has gone - but hey that's vaginal atrophy anyway - pleasure of getting older. It's been looking reasonably good down there, but over the last week I'm back to a rash which really looks quite gross at times. No itch. I'm becoming quite apt at using a mirror in many different positions now - bit of a contortionist. Sex has become a lot easier than last year. I've bought myself a flesh-like soft small vibrator (squidgy not plastic and hard) and with plenty of KY hubby can get me relaxed enough and lubed enough that we both enjoy it, and of course with no side effects using the KY everything at the moment seems good - apart from the look of it. Hope you all had a good Easter. Blue

Hi Blue, Me too. No white bits, one inner lip vanished, other shrunken, clitoris buried...but that's not getting older...that's LS.

blue, we don't know how long it is till your next consultant appointment but why wait? you know you should go get the bump looked at, yes? I read somewhere ( sorry for being vague as to where) that cancer is more likely to start in the clitoral area than the other parts of the vulval area, also if it was cancer , which of course it might not be, but if it was then the sooner it is treated the likelier it can be stopped in its infancy.

I hate going to the doctor at any time. You would be surprised at the lengths I go to to avoid doing this. I would not advise anybody to do as I do on that score.

However if I had a new strange bump there or anywhere else in my vulval region, or a strange new anything, I'd be on that phone pronto and I urge you to do the same. Please.

Hi Blue,

Very intrigued by your "bump". Is it like a cyst or is it more like a sore, the latter being more likely to be LS?

I agree with Joodie that it would perhaps be a good idea to have someone look at it. I am very envious that you are so adept at looking at yourself inside, as I am pretty hopeless at this and end up sitting on the mirror!! Bit cold!

Just come back from my trip to Japan and tried out the Zeroguent emollient cream that the derm. recommended. It is brilliant as it forms a barrier and I don't have to keep rushing to the loo to put more moisturiser on, so am well pleased. It is very easy to use too and good if you want to swim in a pool filled with chemicals, as they so often are!

I am feeling on top of the world as I haven't had raging LS for about 4 days now, so haven't had to use dermovate. Who would have thought a year ago that such a small consideration would make me so happy!

Take care, ladies!

Horses

Hi Horses. Glad to hear you are feeling a little bit better. Where did you get the Zeroguent emollient cream from? Is it prescription only? Sounds a bit like my Epaderm - I wash with it after every wee. If I feel a bit dry down there (which is more often than not) I put a smidge on and leave it on and of course, like you will do that when I swim. Bump - I wasn't quite sure as to what to call it. Very hard to get your head down there for a close-up isn't it! But, sort of looks a bit like a blister, but without the watery top. Also have a purple-ish blister type patch (not very big) on my bum cheek.... it goes on and on doesn't it!

Anyway ... I have taken on board what everyone has said and I'm seeing the gp on Monday to ask whether he thinks I should bring my hospital appointment forward. Im also going to ask for the biopsy this time. How long did it take to repair after your biopsy?

Thanks guys Blue

Hi Blue,

I bought the Zeroguent cream from our local chemist without a prescription. If it had been expensive, I would ask for it to be put on a prescription, but it isn't!

As for your "blister", sounds like a nasty case of LS to me. I have had what I call "sores" down there too, but best to be on the safe side and have it checked.

I was lucky with my biopsy which cleared up very quickly. I was very nervous, as had heard how painful it was, but when you have been through childbirth - or a slipped disc for that matter - it could be a lot worse! My dermatologist was very gentle. Take someone with you, if you can, for moral support!

Bye for now, Horses

Hi blue

That's how my LS started - not that I knew it at the time. I had a sore purple blister on clitoris and phoned dr who said it sounded like thrush and to use canestan! Anyway, it did not last long and I never thought any more of it until after I'd been itching and eventually diagnosed. Yesterday, I got a blood blister inside my top lip and had not been aware of hurting it to cause it - same as down below, so it does seem to be yet another feature of LS.

Hi guys. Well I saw the GP and he's not actually convinced it's LS, after which a painful (because I was so dry) examination, and he's suggested I ask for the biopsy to confirm their diagnosis. However, thought I'd give you an update. Hyalofemme has now been discontinued, and ReplenS has been discontinued via prescription as it as been deemed as a low priority treatment (wonder if this was decided by a man???). Anyway, it can be bought over the counter. going to do some research to see if I can buy Hyalofemme off internet sites. Horses, how are you ... still all good I hope?

Hi Blue,

sorry to hear that you need a biopsy after all, but at least it will be settled once and for all! I am in Dubai where it is very hot. My husband is working here for a few weeks, so I came along. It is very hot and getting hotter, which doesn't seem to agree with LS!!! I am still using the Zeroguent cream, an emollient - please explain again the difference between moisturiser and emollient!! Using dermovate every night, so Iget the chance to sleep. I think I may well use up all my stock of emu oil and use Zeroguent instead, as it isn't so fiddly to use!! How often do you get flair-ups? I seem to roughly have continual LS with the occasional 4-day lapse - heavenly but they never last more than a few days,, How come there are women who say thet have it under control? WHY can't I be one of those women???

Keep cool!!

Hi blue and horses

I'm having a bad flare-up just now - first for about a year I think., I've run out of my red clover tincture, wonder if that's why? It started at the weekend and I thought it felt more like thrush, but I had to go for the capsule as the canestan cream was not helping. I did get a bit relief - so I think thrush had been a factor too, but then it got worse again, so I checked with a mirror and could see two purple blood blisters - one on vulva and the other just at vagina entrance. I've been using the mirror and putting the dermovate right on them and today, touch wood, it does feel a bit better. I'd forgotten how sore it can be and it makes me very irritable, I felt like clawing myself to death! I normally use the dermovate once or twice a week if I feel uncomfy.

Horses, I found this description about emollients - Emollients provide occlusion to the skin (a layer of oil to slow water loss and increase moisture content) and serve as a humectant (preserve or increase water content). - so I think moisturisers maybe don't have a layer of oil and are lost from the skin easier.

Sorry to hear you are suffering and hope that the dermovate kicks in quickly for you. Thanls for explaining about emollients, which I didn't know. Please let us know how you get on with those sores. GOOD LUCK and keep cheerful - it is hard to be happy at times!

Bye for now!

Horses