Lichen Sclerosus at 16....

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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.

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  • Posted

    Oh Autumn - I feel for you

    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

     

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    • Posted

      Thank you very much Sue for all the advice a virtual support! I will try all these methods and learn to live with it better
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    • Posted

      Dont try to be too brave - do talk to someone - we are all here and will help if we can. The LS community is far reaching - Australia Canada USA Dubai France Germany - in fact all over the world - so someone will be able to give you support and a listening ear / eye when things get  on top of you. If you can try and talk to  a close friend or relative that will be a good thing too. Check at your local GP surgery and ask if there is anyone  else with the condition- especially of your own age - or ask your consultant will put you in touch with a support network locally. It may help  you cope.  It is a beastly condition and just think of all of us trying VERY hard NOT to scratch when we are out and about - check when you are shopping and see how many people you can see desperately trying not to give in and wriggling gyrating - or mincing trying to ease The Itch!

      Take care Sue

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  • Posted

    I'm really sorry to hear you have to deal with this at such a young age. Try and keep your chin up xx. Other things to look into is food intolerances these can play havoc with auto immune deseases. Also have you had your thyroid checked. Xxxx
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  • Posted

    Hi Autumn, Sue has given you all the good advice. I can encourage you by telling you I'm 63 and I believe I've had LS since before I was sexually active at 19. I was only diagnosed last year. So you're way ahead of me to have been diagnosed and treated right away. I've had a lifetime of good sex (and also too many experiences where men really didn't care if I was in pain). I've had two natural childbirths with no complications. I now have a good man who knew more about my discomfort than I did. He has no inteerest in causing me pain for his own pleasure.

    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.

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  • Posted

    Hi autumn

    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.

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