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Lichen scleroses

(25 Posts)

Has anyone on here got this ?
just got back from the gum clinic with 4 weeks worth of hydro cortisone cream. They haven't actually said I have got it but that it looks like I could have. I need to see the special fanjo skin dr in 4 weeks time.
I feel a bit shit about it tbh, I know there are lots of much worse things to have, I am pretty healthy so maybe I should just be grateful for that, but have a bit of a sense of impending doom.
I am not too itchy and it's just dry skin in a very small area, what can I do to help it ? Does anyone know what to avoid ?
I have got a tub of aquareas cream for washing and only wear cotton knickers. I have stopped washing in the bath and don't use bubble bath.
I don't wear bottoms in bed to give myself a chance to "air".
Any other ideas ?
Tia.

Waltonswatcher1 Fri 10-Jan-14 13:44:08

An old friend has iit- I know she has linked up with others via net.(She has been to Italy for specialist treatment.)
It's such a rare condition I believe .Or rarely discussed at least .
I think you should keep positive, do keep trying to link up with others as it is a complex problem emotionally too...
Will post again after I chat to her .

Waltonswatcher1 Fri 10-Jan-14 13:48:10

Oh and use that cream really carefully!

Thanks Walton.
What do you mean by use the cream carefully ?

Waltonswatcher1 Fri 10-Jan-14 15:05:16

Some made her worse. Get a good mirror and keep an eye on it. Sorry to be crude .
I would not wash with aqueous either. Avoid all machine washing powder stuff-or buy sensitive skin ones and rinse well.
Are you on the pill? Hormones affect it .
Use unbleached monthly products-or try nonlatex Moon cup.
Spoken to mate.She met others through Social networking sites apparently .She does not use them now .
Keep positive,it might not be that and it won't necessarily get worse.

Pollywallywinkles Fri 10-Jan-14 19:13:39

www.bad.org.uk/site/838/default.aspx

This may be of some help.

Thanks for all your help.
no not on the pill.
Will definitely be keeping an eye on things "down there" I have googled vulva cancer images, so I know what to look out for, I wish I hadn't some of them look very painful. In fact I am going to stay away from google for now.
Will look in to changing my washing powder.
Thanks again for commenting and the link smile

Grumbliest Fri 10-Jan-14 19:44:00

Also don't use fabric conditioner on undies

Brilliant, is a non bio powder ok do you think ?

lia66 Fri 10-Jan-14 19:47:13

3 of my daughters have this.

My eldest was diagnosed at 6 after years and years of being fobbed off by docs, I stumbled upon an article in a tv mag. She had a biopsy and had the steroid cream for 3 months. By the time she reached puberty she was in remission ( if you like ) but since becoming sexually active she's had flare ups ( she's almost 19 now ). She's just careful about products, tends to just use plain water and doesn't sit in the bath after she's washed etc.

She knows she has to be aware of any changes but apart from that she kind of just puts up with it tbh. We fully expect it to recurr in later life though.

6 yr old dd has had steroids but I use coconut oil on her and 2 yr old dd and I have to say that seems to keep it at bay. ( so far ).

I didn't know there were online groups but thinking about it, obviously there would be in this day and age. We're so used to it now that we just get on with it.

It's a very unpleasant condition though so I feel for you op.

lia66 Fri 10-Jan-14 19:48:03

Yes the mildest we've found is fairy non bio

Thanks lia, does the coconut oil help to cleanse or to help with the dryness ?
Sorry for the questions, I am pretty clueless tbh. I just used soap and shower gel before this, which could be part of the problem tbh.
I am quite lucky so far as it is isolated to a very small area, no ulcers or anything too painful, but it is itchy.

lia66 Fri 10-Jan-14 23:23:52

It mostly helps with the dryness and itchyness but I haven't used it for washing as my girls are very young so plain water is still fine. Think dd uses mild shower gel on the rest of her body but kind of let's the suds run down and I've always reminded her to rinse, rinse, rinse.

Thanks everyone.
[Smile]

Tookmytime Sun 12-Jan-14 02:53:06

Hi, I was diagnosed with this last August after suffering for about 18 months - the symptoms in my case were extreme dryness, itching and also the whitening of my labia. I had thought it was simply due to being post menapausal and, because I suffer from vaginal atrophy, thought it was recurrent thrush and had tried to "sort it out" myself - Replense, Canistan etc.
After numerous visits to the Dr I was finally given an examination and a diagnosis was almost instant. I was immediately prescribed Cetomacrogol cream (I think this may be a better product than aqueous cream for this condition) to ease the itching and to keep everything well moisturised and I use this liberally every morning and night and it has been really effective. I am happy to say that I have had been virtually symptom free since using the cream.
I also use vitamin B oil which is supposed to help the scarring and general well being of the skin, don't use soap (the Cetomacrogol can be used in place of soap if required), always shower rather than have a bath, wear cotton pants, don't swim in swimming baths, don't wear tight fitting trousers such as jeans, etc, etc.

I saw a consultant in September and the condition was confirmed. The consultant did not want to see me again as she felt the Cetomacrogol was controlling the symptoms and that it was not currently "active" but she advised me to see my Dr if it flared up again and did not respond to a short course of cortesone cream - Dermovate. I now use the Dermovate for a course of a week if I experience any itching that doesn't disappear with just increased use of the Cetomacrogol - fortunatley I have only used it three times since September.

Due to the combination of my "complaints" sex had become very painful and very uncomfortable - the lichen sclerosus causes the skin to thin and tear easily and scar after healing - but I now use an excellent lubricant called Sylk, (bought on line from Amazon) and I am pleased to say that things are slowly getting back to the good old days! My mantra is moisturise and lubricate!

I don't usually talk about this but wanted to share my circumstances with you. When I found out that I had it I also looked on line. There isn't a lot about this condition but there are a number of support groups where people share tips and advice but sadly, I read of so many cases where the condition was having a really traumatic effect that I was pretty devastated.

I may be very lucky at the moment and I do realise that it's early days and things may end up getting worse in the future but I just wanted you to know that there can be a positive outcome.
Hope this helps to reassure you.

I was diagnosed with this about 5 years ago - I get 'paper cuts'. But TBH I'm not convinced - it took so long to get any help I just gave up, at least I have a name to attach to it.

I found stopping using tampons and wearing stupid thong style underwear helped hugely. The thing that helped me most was canisten on the affected areas - steroid cream did nothing.

It flares up when I'm stressed and pregnancy hasn't helped. I'm terrified I'm going to tear in two at the birth!

Thanks Took and Last for sharing your experiences. I really appreciate all the comments and support.
It's nice to hear that cases can be manageable.
I have just been washing with water so far and haven't being using the cream. So far so good, I don't feel dry or itchy at the moment. I have just got a small patch of rough skin that I am using the dermovate on. Its only been a couple of days and doesn't seem as itchy or sensitive as it has been.

Congratulations Last and good luck. Hope it all goes well.

TheDrugsWorkABitTooWellThanks Tue 14-Jan-14 08:21:51

I was diagnosed 5 years ago.
Post biopsy ouch they decided I didn't actually have LS but vulval dermatitis presenting with very similar symptoms.
I have cetraben for moisturising, synelar for flare ups, & use yes oil based lube both for moisturising and as a lube.
I only used method un fragranced washing liquid, & out all my clothes through an extra rinse. Dermatologist did say to handwashing all knickers with baby soap but life is too short. I only use organic sls free shower gel & shampoos, and use nothing but water on my fanjo. I have short nails, wear cotton moisturising gloves some nights if very itchy.

But, prescribed 10mg elavil for jaw/head pain 4 days ago, and found this helps fanjo too. Am mid flare up, and have been bad. Skin not splitting as would usually even during sex. Been googling the prescription to see if other side effects are normal, & did find an Australian gynae who recommends low dose Elavil for these issues. Will search for the link again if anyone is interested.

Thanks The Drugs, yes that would be lovely of you.
Another question if that's ok. Does the white skin ever go pink again ?
The rough skin is getting better, the patch is smaller and less itchy but surrounding area is still white.
Thanks again for all your comments, they have really helped.

TheDrugsWorkABitTooWellThanks Tue 14-Jan-14 09:47:32

www.drsusanevans.com.au/amitriptyline-and-how-to-use-it/

Googling LS and amitrip brings up many other who suggest it.
I'm surprised after 5 years of 6 monthly gynaecology and dermo visits no one has ever suggested it to me.

I'm finding the side effects interesting, but am speaking to dr this morning about lowering the dose.

TheDrugsWorkABitTooWellThanks Tue 14-Jan-14 09:49:19

In my case no, it's got softer but colour change seems to be with me foreve. Thankfully not a part a show too many people other than DH, dr, gynae, dermo, beautician when I used to go for waxes

TheDrugsWorkABitTooWellThanks Tue 14-Jan-14 09:51:30

Look at yes lube too. Yesyesyes.org/net something like that.
I found it looking for answers to this awfully irritating condition. Is organic & recommended for people with LS, as well as anyone wanting a bit of extra lubrication. It is a lovely moisturiser.

Thanks for the links, yes I suppose a plus side to it being "down there" is that no one really sees it.

Quick update for anyone that googles Lichen Scleroses searching for advice, as I did a while back.
I have been to the GUM clinic today and doctor confirmed that it is Lichen Scleroses, I haven't got any scarring which is really good. Hard and rough bits of skin have cleared up and there is just a small patch of soft white skin, that May or may not go pink again.
Washing with just water has really helped, I didn't think I would feel clean but I do and I don't get dry or itchy.
I have changed sanitary products, a lot of the pads I used were perfumed and I really don't think that helped. The supermarket own brand pads are softer and are not perfumed.
Wearing cotton knickers has also helped.
Doctor recommended aquareas if I do get itchy, which I do when I am on my period, but to carry on just with water when I can.
She said I may get flare ups and which I should be able to manage with dermovate, to use sudocrem as a barrier cream if I want to go swimming while having a flare up.
She also said that I might not ever get any symptoms again, lots of people don't apparently, which is nice to know.
She also reassured me that vulval cancer from LS is very rare, so not to worry to much about it, but check regularly for any changes.
I think that's about it, thanks again to every one for all the advice, I was really freaked out about it at first, but I feel fine about it now.

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