lichen sclerosis

Hi Horses

Went to the gp today and they've had to order it in. He's ordered Replens but I've repeated that I want the other gel, receptionist thinks he's going to research what I've said himself. I won't be able to get this for a few days, but will let you know once I start using it. Speak later and keep your fingers x'd

Blue

Hi, I have had LS for a number of years. I kind of guessed what is was as my mum had it. It took her years to actually find out what was wrong. I use Dermovate and have Diprobase. I use Diprobase before I get into the shower, put it on quite thickly and don't rub in. That stops my shower gel from causing irritation. I use Diprobase on my toilet paper when wiping myself too. I find that lots of toilet paper aggravates the area and can't

use anything but white paper. I can no longer wear nylon next to my skin, it has to be cotton. I can't wear tights as it irritates the top of my legs. I have another skin condition which I get which irritates me, it looks like small warts, which I can scratch off. It is really itchy especially where my shoe straps are, that triggers it on my feet. Could that be Lichen Planus???

Hi cacran,

I have, like you, both LS and lichen planus according to my dermatologist. Both are very itchy, in fact I even have itchy ears, so not exactly an easy place if I wanted to put cream there! I have spots at the lower part of my legs, around my ankles, and if that part gets exposed to the sun it is extremely painful. I can'tput any moisturiser there, as it flairs up even worse, so I have made another appointment with my dermartologist and am hoping she can give me advice, which I will pass on to you.

I was interested to hear ab out Diprobane, which I have never heard about. I tend to use aqueous cream for washing, as it is very gentle although I little different from ordinary shower gel, but I am getting used to it now. The tubs are rather inconvenient to carry around when travelling, but it comes in tubes as well. I feel like a chemist whenever I go anywhere, as I have so many ointments and creamss to take with me!!

Have you had someone look at the warts? Please let me know what the doctor says about them. My spots are sort of pink with white frosting!!! Crazy description and some of them on my arm are not very pretty!! I seem able to put ordinary moisturising creams on my arms, which have been hardened over the years with sun, but my legs are much more sensitive and everything seems to make them sore.

I always wear natural fabrics, when possible - mainly cotton, especially for underwear.

I don't really know the difference between LS and LP, so will find out Monday week.

Speak later when I know more....

Hi All the kings horses,

Thanks for your reply. I have never asked about the wart type things. Thinking about it, they are a bit like flat

skin tags. They don't cause too much trouble really, I just put some anti itch cream on. I have so many things wrong with me, I don't mention everything at the doctors. They have a policy of one problem per visit. I think

it is a bit of a daft policy as lots of things link up and lead to correct diagnosis, so I don't agree with it,at all.

Diprobase is much the same as Aqueous cream. I too have some little tubes to carry in my handbag.

As a matter of interest, do you have Thyroid problems?

Hi cacran,

No I don't have any thyroid problems, fingers crossed, and was at one time tested for it. The skin tags sound like something my sister has, but it might be just as well to check them out in case there is a link. The doctors don't seem to know enough about LS. I am particularly lucky as I have changed surgeries and have a very good doctor, who seems very sympathetic and keeps me in touch with the dermatologist. There are so many questions to ask, I tend now to write them down to remind myself when I go to see her. Can you tell me why you prefer Diprobase to Aqueous. I might have to get some myself!

Take care,

Horses

I asked if you had a Thyroid problem because I think there may be a link with that and LS. Both Mum (before she died) have underactive thyroid and both LS.

I didn't use Aqueous they just gave me Diprobase. Although my Mum got Aqueous and it irritated her so she got Diprobase which she thought was better. I have only experience of the one cream.

What does your sister have that is like mine??

Best Wishes,

Carol

Hi Cacran,

I was referring to the skin tags, which may be warts - I don't know. I believe they are quite common, but if they itch then I am not sure if that is common! I am sorry about your Mum. I lost mine years ago, but still miss her.

Take care,

Horses

Hi Horses,

I am not unduly bothered about the skin tag thing. I can live with it, unless it gets worse.

My mum got dementia so it was a blessed relief really, that she died. It is an awful cruel illness. What

happened to your mum?

Carol

Hi Cacran,

She got pneumonia and it was very quickly over! I didn't get to say goodbye, which is really sad.

Horses

Hi pinkcat, bluelady, all the kings horses and cacran - I've been following your posts with interest as I can identify with something in all of them. I was diagnosed 3 or 4 years ago now, forget which and use dermovate whenever I feel I need to and wash with dermol. I also love sweet stuff and try to cut down on it, but not always so easy. I'm now in perimenopause and have problems with dryness so use lube or coconoil but they do tend to give me thrush if used too often. My late mum had an autoimmune disease and I think she probably had this too as she used betnovate, but was a private person so no discussion ever happened about why she used it. As far as I know, I do not have anything else wrong with me and did have a thyroid test a few years ago which was fine. I have a persistent spot on back of my hand which is pink with frosting - very aptly described by all the kings horses! Last year I got quite a lot of spots mostly on legs, arms and back which took a while to go away and I've not had that as bad again since, but have had a lot of problems in my mouth with ulcers and sore bits on gums so I do think I have lichen planus too. I'm learning to put up with it all, as far as things being wrong with go, I suppose there are worse things to have - although I probably would not say that during a bad flare up.

Hi itchy person,

I love some of the names we have given ourselves!! Especially your's!! I find it very difficult to talk to my family about LS and yet with you guys, I feel I am opening up my soul sometimes - does that sound too dramatic??? Do you put anything on the spots on the legs and, if so, what? My left leg is very sensitive to all sorts of creams and I am very nervous of using anything, as it gets so sore afterwards. Sorry to hear about your gums, that must be horrid for you. I am sleeping badly again, due to LS. I tend to have my shower at night and use emu oil, which is great. Last night I didn't bother with dernovate and as a result had a ghastly night and got up around 3 am. I have done a lot of walking today and hope I have exhausted myself, so may sleep better tonight! I read somewhere that lichen planus goes away, unlike LS, so here's hoping..........

Bye for now,

Horses

Hi horses

Opening up your soul does not sound too dramatic and I know what you mean about it being difficult to talk to family. I think it's best to speak to others who are going through the same things. I only use the dermol on my legs and body to wash with (I never use anything else) and to moisturise with as it can be used for both, it's just like a lotion. I try not to shower every day as i think if my skin gets too much attention, rubbing with towel and drying out, it makes it worse, although I do have a wash and wash my hair. I have emu oil too and use it sometimes, but I do find that everything stings there, even the dermovate. I'm glad we are getting through the winter as I feel it's worse everywhere when I'm wearing too many clothes. Looking forward to being able to wear just one top, light trousers, no socks and mules. I read about red clover being helpful with itchy skin conditions and bought red clover tea and a tincture - I'm not so keen on the tea but I do take the tincture in water before bed several times a week and whether it helps purely because of the 'placebo' effect of thinking I've taken something to help and it will, or whether it has actually helped, I cannot truly say but I've not had too bad a flare up for a while now.

Hi itchy person,

Have never heard of red clover and what is a tincture? I agree with you, it is better to try these things out and see if they work. I am optimistic enough to think that eventually I will get the hang of all this, but for the moment I am groping in the dark! I don't find that Aqueous soap stings, but we are all made differently. I am still on the lookout for a moisturiser that I can carry around with me. I know Aqueous is a moisturiser as well as a cleanser, but I can't get my head round that! I find emu oil very soothing but always smell like a trussed chicken. I miss all the perfumed gels and creams!

Going off to try and get some sleep! Good night all!