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Young LS sufferer. Scared :(

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jules1100
jules1100

I'm new to this forum. I guess i'm not sure who to turn to anymore regarding this. I'm 22 and I was first diagnosed with LS 2 months ago via my specialist ob/gyn. I was put on Disprosone OV - a steroid treatment initially twice a day for the first month then once a day for another month. 

The white patches are still there. They use to have a slight rough/thickened texture and that seems to have gone now. But its almost been two months on treatment and they are still there? It feels like they will never dissapear. 

I'm so scared of getting VIN or cancer from LS. I've read some horrific stories of women with VIN who have repeated surgeries only to have lesions return a few months later. 

My symptoms are burning and soreness - i've never experienced itching. And for some reason doing kegel exercises really hurts!? Anyone else have this problem? My urethral meatus has LS on it so i'm assuming its making everything extra sensitive and sore down there. I don't seem to have issues with urination though. My perineum is also irritated and when I walk it can get annoying as the skin rubs and causes friction. 

I'm just so scared about this. I honestly don't know what to do to relieve my fears. All I can see in the future is me having discomfort in my vulva and costantly having to check myself. 

0 likes, 34 replies

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  • jules1100
    jules1100

    Posted

    Thanks everyone for the replies - I do feel much more calm and you have all provided me with lots of helpful information and a lot to think about! 

    I've noticed a few common themes here - one of them being hormonal imbalance and an emphasis on diet.

    I thought this might be interesting to add - 4 months ago I began tapering off an antidepressant I was prescribed at the age of 17. I had been taking it for 5 years almost 6! I won't go into detail about how difficult both mentally and physically this experience has been for me but I will say that prior to commencing my taper I had no symptoms of LS whatsoever. I didn't even know what it was. I never thought about my vulva! Maybe it was lying dorment or something. Anyway once I started coming off my medication the symptoms started. My periods are messed up and my gut/liver is sluggish. So I believe that due to the stress my body has been under it has triggered the LS to rear its ugly head. That's why when I read a few of you say hormonal imbalance and stress I totally agree! I also believe diet plays a huge role.

    Thanks again for the replies. Its great to have somewhere to open up.  

  • jules1100
    jules1100

    Posted

    P.S Morell I posted a reply to you but don't think it went through? 

    I wanted to say that you mentioned in an earlier post that yeast and LS are tied? Its interesting you say that as I recently had a stool analysis test and they found I had an overgrowth of yeast. Not Candida but just a yeast overgrowth in general. I also suffer from tinea veriscolor - a fungal skin infection which I believe is also connected to the yeast overgrowth. Might be wise to go gluten free/yeast free for a while but gosh it is so restrictive! 

    • Morrell1951
      Morrell1951 jules1100

      Posted

      You don't need to avoid yeast to prevent yeast infections. Yeast in bread is dead when it's baked. It's the sugars that feed the yeast that cause havoc. I still use a little sugar, but no big servings of desserts, candy or piles of fruit.

      It sure sounds like the stress of coming off your meds provided LS with the upset it loves.

      I eat organic and bake with organic flour. Our generation of boomers has been poisoned since the fifties. I do believe our systems have been screwed up long-term. If I had oral lichen planus, I'd be willing to try any diet. We do what we need to in proportion to our suffering. My LS is better than ever since I switched to tacrolimus, so I guess I was resistant to the steroid ointment, possibly because I used topical corticosteroids for decades on my psoriasis. I stopped that fifteen years ago and my psoriasis is quite calm now – it only gets bad during times of stress.

  • janette25
    janette25 jules1100

    Posted

    Hello Jules

    i was diagnosed in the u k by the same as you

    my gyneo told me to use only Double Base gel tom, wash with

    and try to go without knickers but if you have to wear them only wear white and pure cotton

    and for creanm on a flare up to use only Eumovate

    and if slightly itch use Baby Sudocream bit messy but washes of 

    ask you Gyneo what she or he recommends you to use for bad times

    i have had it for 2 years and only had one flare up using the method gyneo said so i am very please about that

    i am an oldie

    dont forget speak to your gyneo

    Janette

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