LS newbie

Posted , 4 users are following.

Hey guys and girls. 

So I was diagnosed with Lichen Sclerosus on my penis around a week ago now. It’s been a hell of a learning curve so far but I think I’m beginning to get a handle on what this condition entails.

I’m a 28 year old single guy, so as you can imagine, accepting a debilitating progression is just not an option. I’m massively inspired and encouraged by all of your journeys so far. I’m 1 week in.. so can only imaging how hard years of this have been.

A quick question for all the guys in here for a newbie: How does your LS display itself? Does it result in peeling skin on the glans?

From what I have learnt dermatologists and Urologists only answer at present are steroids. Which for some seem to work just fine, but not for everyone.

PRP seems a very promising yet expensive alternative that I’m planning on exploring more. 

I’m also addressing my ‘broken’ immune system with a Naturpath. I’ve had IBS, Allergies and other autoimmune things crop up increasingly over the years so it makes sense that something is out of whack. I’m hoping that by addressing that will result in LS  going into remission or at least improving.

Nothing in this world is impossible and I know deep down that we can all beat this thing as long as we are proactive, positive and open minded. Easy for me to say after 1 week on LS I know... but I hope my enthusiasm lifts your spirits if you’re feeling down about this.

I’ll keep you all posted with my treatment progress and LS related developments. 

Wishing you all health and happiness 

6 likes, 6 replies

6 Replies

  • Posted

    We look forward to helping you and you helping us. Nice to hear your positive spirit. What Country are you in?
    • Posted

      I’m in the UK. Thanks! I’m having a particularly positive day today so thought I would spread the love smile
  • Posted

    Hi Lugaluga, my peeling skin happened before I started with the Clobetasol.  So, once you have the steroidal that is right for you, you should not get that again - only if you stop using the ointment for some months.  Don't be too concerned if you need to use a steroidal ointment quite regularly.  Many women on here report that once they have their skin healthy again, they only need to use the steroidal as maintenance every 1 or 2 weeks, while others, need to apply every 3 or 4 days.  We are all individual, and much of this has to do with diet - so look out for those tips on diet and supplements from the wonderful ladies on here!!!

    If you miss-out on using a steroid ointment for too long a period of days, you will get the scarification building up.

    > You must see my tips on penile hygiene, elsewhere - wash every time you have 'wetness' on the end of your penis with WATER ONLY, ENSURE you are 100% dry, no chemicals (soaps, gels, lubes, skin lotions, condoms, and so on) to ever have contact with the LS infected area - as this will only further irritate the condition!  Good Luck ....

     

    • Posted

      Are you using the Clobetasol regularly at the moment? Do you see generally good results with that? I'm seeing my Derma tomorrow so am expecting to get my steroid prescription then. Haven't started any yet.. other than a little bit of HC cream I used when it was suspected fungal infection.

      Do the steroids seem to work at keeping the progression and bad potential scarring at bay?

      RE: hygiene.. do you wash penis with water every time you urinate? I am out of the house for work a lot and so that might be tricky when I'm using public toilets sad

      Also, if not using condoms how can I insure safe sex? Thats a tricky one.. I mean sex is way off my agenda until I get some calming of symptoms.. but don't wanna write it off completely. 

      Thanks for the tips! 

  • Posted

    YES, I have been using Clobetasol for over 7 years now.  I have let it lapse, specifically, ‘forgetting’ to apply at least every other day.  At the moment I am using it nearly everyday.  When I am sexually active (because of the change is size of the glans) I have to apply before, and sometimes during activity.

    YES, Clobetasol took away my initial horrendous scarring - the 2 or 3 times I had not been apply it regularly enough I simply returned to daily application and the scarring cleared very quickly.

    YES, wash you penis with water only EVERYTIME.  In public toilets either carry sufficient toilet roll sheets with you, paper hankies, or the little travel packs of paper hankies are good.  Or, simply do what I do, go into a cubicle and use the loo roll that is there.

    The important thing is that when you can, remove any presence of urine, sweat, pre-ejaculate, etc from the area - the important thing is ENSURE you are 100% dry.  If at home other people share towels, get your own, I use small towelling face-cloths for this AND the other important thing is that these must be washed in liquid soap flakes that you put in the washing machine, OR use a washing powder for sensitive skin such as Fairy.

    I haven’t needed to use condoms for some years, but there some for some for sensitive skin, hypo allergy - start looking for the right ones now, then, you will have something to look forward to, perhaps your partner (presuming you have a regular) could do some searching around for these, too.  The important thing is you must develop a sense of what is right for you penile skin - stay away from anything you suspect could, or has had a detrimental impact on your LS!  Good Luck …..

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