Hi, I was diagnosed 1 year ago and ignored that I have it, has any one else done this?

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When I was diagnosed my mind decided it wasn't anything I really needed to know about, so I just forgot about it. I don't have much itching so it wasn't that hard to forget. I recently went back to the dr and was told it was getting worse, so now it's not something I can ignore as it is progressing. Has anyone was just ignored the issue and how have you been able to finally wrap your head around it? I find now I have shut off even wanting to have sex, not because it hurts but mostly cause I don't want to my partner to see me.

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  • Posted

    NO!  Please go for treatment as soon as you can.  The sooner the better.  It is said that the sooner LS is detected and treated the better your chances are of keeping it under control.  Please, please - seek treatment.
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  • Posted

    That was my very first immediate reaction.  I myself have been diagnosed at a very late stage. Something I wish to no one.  It simply was not recognized as something that needed attention by the medical world.  

    If you still are able to have sex without being in pain - do so.  It also helps the vagina.  Never mind what it looks like.   



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  • Posted

    Hi alwycr,

    I diagnosed myself from internet photos and ignored it for years. I had decided to stop having Pap smears, so no doctor saw my vulva while LS raged on. I had a lot of uncomfortable sex and several yeast infections from the friction. Finally as my inner labia stuck together over my clitoris leaving a small opening, bacteria began to flourish on the trapped smegma and I went to emergency with a huge burst abscess. Then I was sent to a gynaecologist and diagnosed on sight with LS. In the year since then – note: very gradually – my vulva has calmed down, my perineum has mostly stopped tearing  and the white area on my perineum is quite pink. The angry red areas around my anus and in the crease of my pubes have gone back to normal. I don't squirm on the couch any more. My vagina had narrowed a lot and my understanding husband admitted he'd known all along that I was in pain during sex. He found that a turn-off anyway. His attitude now is that lots of older couples like us have stopped having sex. I do feel if I'd been treated earlier I might still be able to have sex. However, I'm very confident that with consistent proper application of the treatment I have zero chance of getting squamous cell cancer of the vulva or having problems urinating when I'm ninety.

    If you haven't had a full education on LS yet, please watch Dr. Goldstein's presentation on treating LS. It goes far beyond what most of our doctors have time for in an appointment. It's very important to use the prescribed medication properly and also take care of your vulva by:

      • avoiding soaps

      • keeping moistutised with something oily like petroleum jelly or coconut oil

      • think about what stressors you can manage in your life

      • look at any foods like sugar that seem to cause inflammation in your particular case

      • wear loose cotton panties and no tight synthetic pants.

    There's a wealth of imformation in this forum, multiple pages of topics. Do hang around and feel free to talk. We all have trouble talking about such a yucky private and emotionally loaded invisible illness. But we can do it freely here!

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  • Posted

    I am sure the external appearence on view will not be that obvious, and most men - not sure about women-  dont really worry about the look of that area - only that it isnt painful.

    I mostly only used moisturisers for a coupld of years - and only used the steroids when i had a flare up- which wasnt that often- The condition progressed slowly - but steadily Watch the Dr Goldsteins talk  found on line lichensclerosustreatment.com many of your questions will be answered i am sure. If you dont tear or itch perhaps you are in one of the 4 categories that Dr G talks about

    Do use the steroid you were probably prescribed- it is the thickened tissue that needs to be penetrated for the anti inflammatory to work and reduce the rishk of further harm

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