Diagnosed 1/27/10

:? hi your story is so sad but you are not alone there are enough of us out here with this LS read all the input you will see we have all found either the same ways to treat this problem or have new ideas something in here will help you I am sure a lot can be trial and error I am a lot older than you and I have a very supporting husband when I found out in december last year I had never heard of this I thought it was just me and yes I felt very alone it took me a long time to visit my gp what a fool I was she pick up on it referred me to a gyne consultant at the hospital but in the mean time she gave me a prescription for fucibet cream this I found was a miracle cream my itch stopped but the condition wont go but you can try to control it and use products that will help you this is all about you now so read as much as you can the other sufferers have mentioned a emolient cream called paladin you can get this on ebay or your doctor could do a prescription for oilatum to just cover the area but first use the cream from the gyne I thick it's other name is protopic if it does not work ask for dermovate it is a course but dont give up hope like I said at the start trial and error you will find the right medication and then you will be in control. Ah sex talk to your fiance dont shut him out keep trying with the lubrication you will find one that help's main thing relax tension will make it worse and painful go back to your gp if you have a female doctor she will be more understanding if not talk to the practice nurse they will be your friend and can talk to the doctor if you are shy talking bout this with a male gp take care if you will get other replys so you know we will be your new family and offer our support if only in words take care :D

Please check if triamcinolone is a pro topic medication. If so ask your specialist etc., about pro topics as they are yet to be proven over long term..Quite a few of us have asked and checked about this medication and the jury is still out...I know that does not help you but if you are thinning at the rate you are then maybe they are giving you a short sharp blast of triamcinolone steroid to halt its path.... As the girls on here will tell you prevention is the best medication you can have. A big jar of emollient wash like epaderm etc., and a barrier cream for the comfort, lots use paladin and a lot of lubrication before sex and if the area is very sore then just medicate alone for a few consequtive days and then try again..The paladin isa great helper when soreness and itching is present..If you search engine paladin rash cream you will find the outlets here . Dont get disheartened , stress is not good for your auto-immunes and there is a family out there for you, as marad said... us.xx sue

Hi there - I was diagnosed a couple of years ago and went from having no information at all from my consultant to looking on the forums and finding out lots of information - which was a bit overwhelming and confusing. But the information these guys give is excellant and worth the initial confusion you get!

I got a pen and wrote everything down that I felt would help me. A lot is mentioned about medication, and the use of steroid cream is important as it helps to stop the fusion/condition from worsening.

I have found that some cream (barrier creams) are quite thick - and applying it to the area can make it ouchy ! I tried Purte Emu Oil - and it is FANTASTIC ! So easy to apply, and has helped me a great deal.

I've heard that 'YES' can be used as an alternative to KY jelly.... search google for it - it's worth a try - the more lubricant the better - and definately talk with your fiance about how you feel - you may even wish to consider a sex therapist.

There are other things that can help as well - wearing loose clothing - jeans tends to aggrivate, use a non bio powder, change in diet, avoiding sugar, de-stress, I know you are at college - but try not to stress too much as this doesnt make the condition any easier. Try relaxation excersises.

It's a lot to take in - but we're all here to help - we're all in the same boat - and we will swim - not sink! There will be times (like now) that the waves seem too high and swimming through this horrid condition may be difficult - but please be assured that you are not alone. Wipe those tears and take a deep breathe, and swim...........

Once you get the right balance of medication etc you will see improvements.

I hope I have helped by even a smidgin.

Take Care x

Hi - I am so, so sorry you feel so alone and know it must be so much more upsetting not being able to speak to your Mum. It is such a scary thing to go through and helps to talk about it. I know it is not the same but can you talk about all your fears and worries with your finance or a close friend. I was diagnosed recently and am 29 years old. My symptoms came on when I had my miscarriage in December with my first pregnancy and was going from doctor to doctor. At the moment I am on tablets to help the nerve pain which has helped and can get a bit more sleep now. I have not been married very long but my husband has been very understanding. I am using a steriod cream on and off and have been also feeling very scared with the changes as it does really freak you out. Apparently stress can make things worse but don't know how you can not get stressed with this disease. I had reflexology on Saturday which really helped me relax and am going to have acupuncture tomorrow as I have heard this can help and am willing to try anything. I am going to carry with both of these for once a week for the next month to see if I have any improvements.

For 2 weeks now I have started a diary and keep a record of how I am feeling emotionally, physically, what foods I have eaten and any different things I do such as the reflexology. Hopefully over a period of time I may see a pattern of things that help me. The diary has helped me get my feeling out as well.

This forum really helps you feel like you are not alone.

Am thinking of you x

[quote:bb9ed5039f=\"LesleighAnn87\"]The first couple days of January I noticed that the inside of my inner labia was turning gray. 1/5/10 I saw my gyno. he said it was either vitiligo, or lichen sclerosus told me to try using nuvaring birth control and estrace estrogen cream. A week later my inner labia started shrinking and thinning. I had a biopsy done 1/19/10 and on 1/27/10 confirmed the diagnosis of lichen sclerosis. The new gyno gave me Triamcinolone acetonide cream 0.5% and said if no improvement in 6 weeks to come back. Now, 1/30/10 my inner labia is shrunken extremely, and almost paper thin. The cream has helped with the external pain and itching, but sex is like someone inserted a tube of icy hot inside of me. I have tried KY jelly sensitive, wet lubricant, and it all hurts so bad. I am only 22 years old and I am engaged. I feel like the doctors don't see this timeline of how quickly it is all happening, and I want serious treatment now! I think I'm starting to notice a white tiny spot on my clitoris and I'm scared what is going to happen next. I also have juvenile rheumatoid arthritis, which I believe is also an autoimmune disease. I just dont want to feel so alone in this, and i wish so badly i could call my mother and cry, but she passed away 2 years ago. I'm trying to focus on finishing college but this is affecting me tremendously. I feel like crying all the time, and I'm scared about being scarred and how this is going to affect my relationship with my fiance. just need someone who is going through the same thing to talk to. help!?[/quote:bb9ed5039f]