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Recently diagnosed with Lichen sclerosus on my genital area

Posted , 11 users are following.

ryan08228
ryan08228

imageI've had this white dry wrinkly spot right below the head of my penis for about 6 months now and after severe anxiety and countless hours of searching what it could be I went to a dermatologist. He looked at it for what it seemed like for a couple seconds and instantly said he thinks it is Lichen sclerosus. I was prescribed clobetasol and have to use it twice a day for 4-6 weeks and if it does not get better I was told i might have to have surgery to remove the affected area. Basically what i want to know is what would the surgery make my penis look like and if the the treatment works with the clobetasol does it all clear up and look normal again? Any response will be greatly appreciated, thank you very much. I have attached two images image

1 like, 13 replies

13 Replies

  • Guest
    Guest ryan08228

    Edited

    Dear ryan,

    It certainly looks like lichen sclerosis and steroid cream is the correct initial treatment for the condition. I'm not so sure why surgery would be indicated- was it because it looked unsightly and you wanted it removed? Surgery is usually indicated if the foreskin is severely affected by LS and can't be pulled back or when it affects the meatus (pee hole), but most of the time if LS is not affecting sexual or urinary function then it can simply be monitored. Clobetasol can reduce the scarring of LS but it's unlikely to make the skin look or feel normal again. In the short term, surgery is likely to improve the cosmetic appearance, but it could make the erect penis feel tighter as some of the diseased skin is removed. But as LS is a multi-centric condition, it can develop in other areas and repeated surgery to remove even more tissue will become self-defeating.

    There's a detailed account of LS on the Dermnet NZ site. If you're unhappy with your current dermatologist you should seek a second opinion from a specialist with an interest in managing the condition.

    Adhari

  • Wee_Dugie
    Wee_Dugie ryan08228

    Edited

    Dear Ryan, Adhari has stated precisely the situation from a medical perspective and what this means in practical terms for you.

    I am an LS sufferer myself and I have managed my condition for around 9 years now with the regular application of Clobetasol.

    What you have certainly looks like LS, I wonder whether the Dermatologist actually confirmed the presence of LS by conducting a Biopsy?

    How does the skin feel and have you noticed anything that makes it worse?

    If there is anything you would like to check out with in terms of dealing with the condition then simply respond within this Forum, I do NOT do Messaging / Private Messages

    • ryan08228
      ryan08228 Wee_Dugie

      Posted

      The dermatologist just looked at it but he was pretty certain it was Ls and the skin feels dry and flaky, but that's when I wasn't using the clobetasol and I'm guessing it won't clear up. Then I asked him if he thought it was scarred and he said it looked like it was really inflamed but not scarred. i would like to get a better understanding of what im dealing with. Thank you for taking your time to respond and read my post

    • Wee_Dugie
      Wee_Dugie ryan08228

      Posted

      I know it is likely to be really painful to think you have something like this going on on your genitals, AND you are still really coming to terms with what this all means, but how long ago did you first notice symptoms that things were not quite right?

      So as you say, it won't clear up - but your skin will look a great deal healthier if you get your treatment regime right. This is also related to how long the infection has been present, which is why I ask when you noticed the first symptoms of this.

      If there are any questions you want to check out with me simply get back to me via this Forum .....

      The first tip is you need to give yourself at least 6 to 9 months to get to know how to get to use the clobetasol and get the best out of it to enable the skin to be as healthy as possible.

      To a major extent this will depend on how sexually active you want to be and the frequency with which you want to masturbate - unfortunately, these are the practicalities you need to learn to manage ......

    • ryan08228
      ryan08228 Wee_Dugie

      Posted

      Well I noticed about 6 months ago but it took me until about a couple weeks ago to talk to someone and finally set up an appointment for it. I'm only 20 years old so it was extremely embarrassing for me and looking back I wish I would have done something as soon as i noticed but i know it's something I cannot really control so letting it consume me is not worth it but if it something I have to deal with for the rest of my life then I'm gonna have to accept it. As for being sexually active and masturbating I don't even want to think about that right now. I'd much rather figure out as much as I can and deal with what I can in this moment. Thank you for being honest with saying that it won't clear up because I can't find anything about LS in males other than the basic information but I am mainly just scared that it will get worse. I can live with my penis looking like this but I do not want it to get any worse. As of now it doesn't itch and it also doesn't hurt when I get an erection. I mean in all the negativity about it i understand it could be worse I just really don't want it to progress into something worse.

    • Wee_Dugie
      Wee_Dugie ryan08228

      Edited

      Unusually, I have recently responded to 2 or 3 other males in this Forum regarding the fact that they they have potential, or just confirmed Lichen Sclerosus.

      There is a great deal of detail elsewhere on this website that I have just posted to another Forum Post:

      .

      .

      Any readers of this should note there is a thriving Lichen Sclerosus Forum on this website, and, as the vast majority of Lichen Based skin disorders sufferers are female, the majority of posts on the Forum are from Women.

      For in-depth detail of the factors related to Lichen Sclerosus your attention is drawn to the following Forum Posts on elsewhere on THIS website:

      .

      https://patient.info/forums/discuss/nutritional-support-protocol-for-autoimmune-diseases-636963

      .

      https://patient.info/forums/discuss/pathway-into-and-out-of-autoimmune-diseases--661033

      .

      Note the reply to an additional post by Starlight8 at this link:

      https://patient.info/forums/discuss/lichen-is-taking-my-life-need-help-660159?page=0#3199398

      .

      https://patient.info/forums/discuss/my-recent-help-with-using-vitamin-e-as-a-topical-708964

      .

      and

      .

      https://patient.info/forums/discuss/the-vitamin-d-cascade-or-flow-of-the-cofactors-required-to-rebalance-our-bodies--707526

    • martin24428
      martin24428 ryan08228

      Posted

      Hello can you tell me if I have a small white band of reduced tissue,on remaining forskin after circumscision,due to LS which causes burning and pain after activities,even when using clobetasol is the damage gonna be permanent,because the skin cannot regrow again due to LS?

    • martin24428
      martin24428 Wee_Dugie

      Posted

      Hello is waiting,ie scarring permanent even maybe 6 months down the line of using clobetasol,as LS will not resolve hence skin layers cant regrow?,this is very worrying

  • MH88
    MH88 ryan08228

    Posted

    Dear Ryan,

    I hoped you get recovered.

    I believe i am suffering now from LS, early stage. Do you have advice for me?

  • joshuapryce1987
    joshuapryce1987 ryan08228

    Posted

    I think that this is something you will have to discuss with specialists before considering the surgery. Any kind of surgery can be good for the future but also can be worse.

  • patrick02805
    patrick02805 ryan08228

    Posted

    Hi all, recently diagnosed and very scared. I just have a small white ring around the meatus, but the meatus seems to stick together sometimes, especially after sleeping all night. Have been using clobesatol for 6 days, seems to be helping though I know it can be a long road. What I want to know but can't seem to find:

    1. I'm worried about this creeping into the urethra, but can't find how common that is. If I thought I'd just have to use this steroid every day for 3 months and then 1-2 times/week to prevent from coming back that would be fine with me, but if it gets in your urethra it seems like that's much more difficult to treat.

    Anyone know how often this happens?

    Also, how can you tell?

    Also, are there treatments for this besides urethroplasty?

    1. How long does the clobesatol take to start working?

    2. And is there any way to use the steroid inside the penis so that it doesn't spread down the urethra?

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