recently diagnosed

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I am a 60 year old male from the United States.  After 2 years and 2 doctors telling me there was nothing wrong I was finally diagnosed.  I am beginning steroid cream therapy. After a few days now I think I am having some relief but it is difficult to tell. 

I hid my problem for as long as I could. I thought it was somehow a sexual transmitted disease but couldn't think how. 

Now I've been diagnosed I have done a little research and found there may be a genetic link and not contagious. 

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  • Posted

    Hi, glad you did some research. It is definitely not contagious. Its an autoimmune disease that can be hereditary. The cause is not known. Lots of info here on this site for you to read. You are not alone. Glad your gettung treatment. Symptoms get better but there is no cure. Have to continue treatment to keep it under control. 
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  • Posted

    However as a male you could be cured with surgery if you were not circumsized . That is the only treatment that has been known to "cure" it for men. Women tend to have it for life
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  • Posted

    Lots of info on this site, though from a female majority.  It perhaps has not been talked about, but I think there are more people who think at first that they have a sexual transmitted disease. Can you tell more about ' a genetic link?'   
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  • Posted

    Hi Darrell,

    Glad you're here for support. So, this whole business of hiding LS because it's sort of yucky is common to both genders.

    We have a GP who posts here sometimes who posted this information to add to the theory that women get LS more often and worse because urine comes and stays in contact with more of our anatomy. This is what Heather wrote

    "There was correspondence in the British Journal of Dermatology recently regarding the cause of LS, and Dr. Chris Bunker from University College Hospital in London, who is a dermatologist seemingly interested in male genital dermatology. He suggests that it is likely that LS may be due to 'chronic occluded exposure of susceptible  epithelium to urine'. This means  urine on sensitive areas may be affecting the tissues and causing inflammation which leads in the longer term to the sclerosis, which then causes either itching , soreness and lack of the normal elasticity which leads to tearing.  The reason for this suggestion is that males circumcised at birth never get LS, males never get it around the anus, LS appears around surgical scars and genital piercings, and also around urostomies (where the urine tubes are brought out on the skin after bladder removal). Circumcision also seems to cure males with the condition.  It is suggested that some genetic predisposition of the skin 'barrier', such as occurs in eczema, allows it to occur in some women and not others. This genetic predisposition may explain the connection with autoimmune diseases. "

    Hope that helps and that the cream works for you. Don't expect speed. I was a bit disappointed after six months, but now it's been a year and I'm really good.

     

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  • Posted

    Hi there Darrell -There is another chap who posts here too - you may want to message him privately so that you can share your issues with him so you can have the support that we females are unable to give you- our issues differ from yours somewhat.

    You may have seen references to Dr Goldsteins webinar - do look at it  there may be answers to questions you didn't know you needed to have answered!

    The biggest issue we all have with auto immune conditions is the part that stress plays in our lives. Others will talk about their diets too. Often there is a lack of thyroid in the system so get your doctor to check your levels

    The ultra potent steroid can sting - it is an anti inflammatory, so eventually it is hoped that the inflammation decreases to stop the itch  etc. I am not sure how LS feels for men - but as Morrells thread suggests do keep the urine off your skin at all times - use a moisturiser to keep the skin supple and a barrier ointment to keep the urine off the skin.

    The Dr G lecture talks about massaging the steroid ointment in for 90 seconds to the female vulva - i am not sure how that relates to  the male anatomy, but the issue is to get the anti in'fla'tory into the deeper layers of the scar tissue - Now you see why you may prefer to relate to a chap - also the moderator of this site - his name is Alan - may be able to steer you to helpful threads - do contact him, he is very helpful

    Best of luck sue

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  • Posted

    Hi Darrell,

    You have all my sympathy.  I think, like you, that it is genetic and a very awkward subject.  I am pretty sure that my Dad has LS, but would never discuss it with me.  He is in a retirement home now and there is always a steroid cream in his bathroom, but although I have got up the courage to tell him I have problems, he has never reciprocated.  It isn't contagious.  Take care and Bravo for speaking out.

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    • Posted

      I would never have known if anyone in my family including my brothers would be afflicted.  This, in my family,  would have been a taboo subject. A genetic link appears to be the only true connection to this problem. Other things like urine seems to activate it but the how is yet unknown by what I see. As a man the discomfort of skin tear by just a simple stretch of the skin to urinate is horrible. 

      Some things I've read states it rarely occurs in circumcised men yet I am circumcised. 

      I am hoping for some relief with the steroid cream. 

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    • Posted

      Well, Darrell, there goes that theory. You're circumcised. Hmmm. Do you wear synthetic underwear or trousers? I'm wondering if there's any reason dampness is persisting after urination. It was mentioned in the article posted by the GP who's an occasional poster here that very heavy men can have sort of a 'false prepuce' – other flesh that makes contact with the glans.
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    • Posted

      None of the above.  I do however seem to naturally retract the penis head some giving an appearance at times of partial uncircumcised.  This is the only thing I can think of that would harbor any moisture. 
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    • Posted

      I know women it helps to keep the vulva moist because LS causes dryness which then can create tearing. Perhaps for men keeping the area dry would help.? My husband is circumcised but like you the head of the penis naturally retracts under the skin. That created some issues for him so he started using baby powder ti keep it dry.  Something to look into. Not too many men speek up about having LS. I believe I saw one male on the FB site.
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  • Posted

    And we women thought that men would be better off with LS.  Reading your story tells that these theories do not seem correct either.  Hopefully the globetasol will help and perhaps it is possible to try some of things that the women here are using.  Hard to tell what may or may not help.

    Wishing you well, Darryl.  

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  • Posted

    I do believe forums such as this is a very positive way to break through the barrier of women vs men dealing with this issue. Though the suffering may sound very different it is however much the same. Things like skin tear, scar tissue( this for me is a difficult thing to admit. Male vanity takes its toll here. As the skin below the penis head tears it reattached unusually back to the penis head in an, in my opinion, ugly way.) Embarrassing if I were to have a sexual partner and also painful.  Knowing I will tear, bleed and deal with pain changes not only my choices but how I look at myself. 
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    • Posted

      So true, Darryl.

      Trying to come to terms with our' new selves' is I believe, one of the hardest tasks in this.  Plus not being able to talk to others openly, like other people talk about their being diabetic, or their painful arthritis or other. We suffer in an anonimous way, don't we.  Having this burden which one can seldom share with anyone who doesn't know what this disease is all about.  As if we are to be ashamed of ourselves, or something.  No longer 'functioning' sexually in this over sexualized world could easily cause feelings of inferiority. It is hard work to be able to cope in such a way that one can stand proud again.  

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    • Posted

      So very true. I cannot ever see me saying while in que to someone that my penis is driving me crazy the same way someone would talk about their arthritis. 
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