New to LS - start here

I am new to this website and just trying to get the swing of things. Just to give a little babackground. I started having issues with irritation in my scalp at 13. My parents told me it was probably just psoriasis and I would be ok. So I left it. It would flare up and I would scratch til it bled and repeat for several years. Then around age 17 it migrated to a more intimate area. I again talked to my mom who thought I needed more sleep and some lotion would help me out. So I ignored it feeling embarrassed and ashamed. Then at 22 I became pregnant and it went away buts red irritation she we'd up on my nostril area. Not making the connection I was happy it cleared up and thought that my nose was pregnancy mask everyone he talks about. After my son was born it came back and during my second pregnancy when the same thing happened I realized something was up. In early stages of pregnancy it got so irritated I finally swallowed my pride (stupid pride) and went to see Dr. She took one look and said it was Lichren Sclerosis and "what a shame". Way to make me feel relaxed. After my daughter was born my family Dr finally saw me instead of other Drs in the office where he gave me a cream. Upon using the cream it helped my downtown situation. But my nostril area became inflamed and irritated. I went back to Dr to have him tell me there is no link and no he would not refer me to a dermatologist. Then he prescribed a different cream for my nose. Within 3mos that was all cleared up and my ear lobes began to crack. Again went back to get another cream and no referal. Finally after a year if the ear cream not worked by I am awaiting and appointment.

After all the research I've done I have a feelings by I'm more on the side of Lichren Plantus or a mix of both. Feeling annoyed and embarrassed about the whole thing. Not something I ever talk about. Just looking for support and some alternatives to steroid creams.

Hi, I've joined this group because I need help!! Back in March I noticed that my parts of my vagina had changed to a grey/white colour, it really worried me so I googled it and Lichen sclerosus sites came up. I also experienced itching, mostly at night and only to the right!? So I went to my GP and she agreed that it looked like LS. She prescribed me a steroid cream and told me to use it twice a day and referred me to a dermatologist.

I finally got to see the dermatologist Friday just gone. Until then I was basically using the cream everyday as it did help, the colour has returned and the itching has calmed right down. The dermatologist had a look and said she could see no signs of LS and told me to stop using the cream. I stopped and already the itching is starting to return!!

I'm feeling really scared and alone. All the information I have had been off the internet. I don't know what to do? I'm pretty sure it's LS but I'm worried that I'm using too much cream. Can anyone help me? Thank you!!

Dr Goldstein sems to recommend soaking the area before applying steroid cream,  but others on this site say otherwise.  What should I do? Soak or Not.?  He also says that because the skin is thickened, it can do no harm to use lots of a steroid cream which might cause skin thinning.  Everyone else and my Gynae say only use a very small amount.  What to do? I'm very confused after several month of being dianosed with this disease.

 

Thanks that sounds like good advice

Hi everyone, Im so glad I found advice here. I was diagnosed today after seeing my gynaecologist, . Im 42 and im still having periods, i have two children and for the last 6 months i thought i had thrush. I tryed everything to get rid of it but it seemed to get worse, i have it around labia and bottom and between the crease of my legs too. because i didnt know what this was, i itched at night and i tryed not to scratch but sometimes i gave in. I had peeling skin and i tryed to pull this skin off which made it all worse! I went to the dr and got fast tracked from Dr as suspected cancerous area. The last two weeks have been a nightmare, not knowing how, why or what was going on! I saw my gynaecologist and she has given me dermovate cream , i have to use everyday for a month and then every other day for a month at the moment. If it doesnt work (she said 2 weeks should show its working) i have to go for a biopsy. I know im younger than normal LS sufferers but surely this isnt unusual? im worried even more now as is this LS or is it something else? any advice is way more than i know!

Thank you in advance!

Hi.  I'm new to this forum but already just browsing here I've learned more about this lousy condition than I have anywhere else in the past year or so since I was diagnosed. So, thank you!  I'm from the States but it seems that better information is found on sites from other countries, especially Europe.  I wish we were as advanced here!

I figured I'd do the survey since it was easy, but I'll also add my 'basic' symptoms: Severe itching, redness, patchy vulva, atrophy of the labia minor and I fear the clitoris, as well.  No obvious fusion, just atrophy. Just pure discomfort.

How long have you had a diagnosis of LS? Diagnosed about a year ago

Do you suspect that you have had this for much longer? Absolutely longer

Is it currently under control? I thought so until a huge flare up just side lined me this week.

When did the irritation start? Not sure really.  If I think back, I can remember having issues my entire adult life.

Has the area always been irritable? Yes.  I feel like I'm always 'aware' of my vagina.

Are you suffering a flare at the moment? Yes (June 23, 2105)

If so, can you attribute the cause to anything specific? The only thing I can come up with is the heat and humidity we've been having here lately.

Do you suspect that other members of your family may have had/have LS? Not a clue.

Do you have any other skin conditions along with the LS? Yes: psoriasis

Describe your skin type: Fair but I tan well.

Do you suffer from an autoimmune disorder e.g. rheumatoid Arthritus/Crohn’s/please add …? Yes.  Psoriasis and Psoriatic Arthritis

Have you been tested for high cholesterol? Yes. Was a bit high last time it was checked.  It shot up due to a medication I had been on. 

Do you suffer from high blood pressure? No

Statins? No

Diet and exercise? Relatively healthy diet.  Yoga, strength exercises, mild cardio

Do you suffer from high blood pressure? No

If so are you being treated for this? n/a

Do you suffer from low blood pressure? Slightly low

If so are you being treated for this? N/A

Do you suffer from anxiety? Yes

Have you taken steps to reduce your stress? Of course.

If so what have you done? Yoga, rest, drink heavily

Do you have a flare-up of LS if something is causing you stress? I don't think so.  A flare up causes me stress. 

Have you had surgery related to LS? No

Biopsy: No

Have you experienced other surgery? Nothing related to this.

Episiotomy: No

Please list any of the prescribed topical creams you use currently:Clobetasol

Emollients: None

Barrier creams: None

Alternative treatments: None

What sort of products do you avoid when cleaning the area? I only use water.

When do you wash? In the morning.

How do you dry yourself? Blow dry or pat dry with a clean paper towel.

Do you wash in hot or cold water? Warm

Do you dread having a poo? No What happens? N/A

Does pee sting you? No What do you do about it? N/A

What can you no longer wear? Tight jeans. I don't wear underwear to sleep, either.

What do you now wear? Yoga pants (tight, I know, but not as harsh as jeans), cotton pants, skirts, loose cotton pants or nightgowns to bed.

Do any foods seem to make the LS worse? I don't think so.

Is this discomfort on already damaged skin? Atrophied skin.

I was just diagnosed with LS today. I'm very upset and scared. I am 44 and have been having itching for years already. The stories of fusing, no sex just traumatize me. Is this what I have to look forward to? Have the white patches both sides of clitoris and skin showing some damage. Also, the potential of cancer is sobering.