Lichen Sclerosus at 16....
Posted , 6 users are following.
Hi, I am 17 and was diagnosed with LS in March last year, but symptoms began in October. It messing up my social life (it's hard to do fun things in pain or the fear that it will act up), school life (i've missed so many days due to pain or I can't consentrait), sex life (it hurts a lot sometimes, not all the times. I know i'll never be able to fully enjoy it. And it's also humiliating to tell a boy or girl about it) and I believe it's a huge factor in my depression (due to all the things it causes and humiliation and pain, I only assume). I assume most of you have lived with it for a while. I'm going on a year. And it's been an awful year. If any of you could please help me with information or tips I would be grateful. I already know it can't be fully cured. And I've had 2 doctors (gynaecologist) diagnose me, and my next checkup is on December 1st.
1 like, 6 replies
suedm autumn1997
Posted
First of all try and manage your symptoms the best way you can
find out as much as you can- without frighteneing yourself - about the condition. A good first step is to walk/listen to the Dr Goldstein lecture
https://patient.info/forums/discuss/dr-goldstein-lecture-271556
He is a Gynaecologist in a Washington hospital.
You have pain caused by? itching where you have scatched perhaps? Burning when you pee and menstruate?
Would you be humiliated to tell someone you had asthma? LS is just another sort of auto immune condition.
You could say to(girl and boy )friends you have an autoimmune condition on your "undercarriage" . If the circumstance arises then you could say that sadly that it makes (pentration) sex painful
NONE of us enjoy our condition but take heart the symptoms can be managed so that you wont always feel as uncomfortable as you do now.
Practical things
Keep urine and blood off the skin Use a Good thick barrier ointment / cream after you have applied the ointment you have been prescribed - What did they prescribe? Clobetasol is the normal drug for LS. It is a potent steroid cream that is used to prevent further damage to the vulva. Wait for aobut 20 mins before applyikng the barrier cream - apply it after every you pee - keep a small amount in your handbag. Dab not wipe, Do check your self - use a shaving mirror and a good light see what is happening- some even have taken photographs when things are bad- A good idea to keep a record- for you not anyone else
Sadly no tight pants/ trousers/ thongs
You may find it helpful to trim the longer hairs in the area
DO NOT SCRATCH! rub your arm or leg and THINK you are scratching the offending itch- it CAN help at times
Keep the undercarriage cool When the itch/ pain too much try a cool wet flannel. Fish oil capsules have been shown to reduce inflammaton in other autoimmune conditions- So that may help too
A BIG factor with most autoimmune conditions is STRESS, so dear Autumn do try NOT to worry freak out or get depressed. Try and get your natural endorphins active Exercise is brilliant for releasing these wonder drugs in the body. Try and laugh and have as much fun as you can. Do you have anyone you can talk to about how you feel - Is ther a close relative or friend to hug occasionally?
You will get lots of virtual hugs from this site, Do read the other threads as loads of advice is given - ask as many questions as you want - you can have a stamp and shout about how you feel here too if that helps. If there are things you dont want to say in the public domain use the envelope under the avatar- is that what the little pictures are called by the names? You will then be able to write privately to anyone on the site
Good luck and try not to get too down - Perhaps you could take the odd painkiller if things are TOO bad - use one that is antiinflammatory - but do make sure you ar enot allergic to any of them
Tak care
Sue
autumn1997 suedm
Posted
suedm autumn1997
Posted
Take care Sue
justine89448 autumn1997
Posted
Morrell1951 autumn1997
Posted
Unfortunately it's hard to be sure our experiences match since there do seem to be several versions of LS – one is very aggressive, it changes the 'architecture' of the vulva really fast. I seem to have a slow kind.
If you Google the Koebner phenomenon you'll understand that any sort of trauma to the skin can trigger a flare-up of LS (it's the same with my psoriasis). So the friction of sex when you're already sore can make things worse, much like scratching does. We don't want to keep tearing down there, because the scar tissue just piles up and turns our stretchy, soft vulva skin into stiff, fragile, thickened skin with a white 'cigarette paper' surface of dead cells that tears very easily – and deeply if LS is not treated properly.
There's hope – the steroid ointment works quite gradually, so the early results can be quite disappointing. I think most of us felt really bad for the first six months after diagnosis, which is a kind of stress and can make things worse. So, the more you can manage your emotions, the better for the LS. I've found this forum a huge help in getting used to having a horrible but invisible problem like this.
Glad you found us.
wendy14679 autumn1997
Posted
sorry to hear you have LS. I console myself with the thought that there are worst diseases, but I haven't got my whole life in front of me, like you. Just try to keep off sugary foods and use plenty of moisturiser day and night. I use a barrier cream at night as well, as I don't fancy washing in the middle of the night after peeing! It is very hard to discuss this problem, depending of course on your personality. I tend to be more secretive and there are probably a lot of women like me, so there isn't enough awareness of LS. Thinking of you and wishing you well.