males with lichen sclerosus?

Posted , 10 users are following.

I'd like to ask men that have this some specific questions as to your beginning symptoms and treatments to see if it varies any from females symptoms and also what it looked like in the beginning...

0 likes, 21 replies

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  • Posted

    In the beginning it was just a couple of white patches on the head of my penis, no irritation or soreness at all. Went to my GP that eventually referred me to the dermatologist, who confirmed what I already suspected... LS. Dermatologist prescribed me Dermovate, which did nothing for the white patches. Then about 6-8 weeks ago I experienced my first flare up which is only just now beginning to get under control (I hope/think). Flare up is very sore foreskin with red patches creeping across the head. I'm not convinced the Dermovate has helped to be honest, it's only now I'm down to using it every few days that things appear to be improving. I'm hoping diet and lifestyle changes will keep things under control going forward.

  • Posted

    Hi Jared, I'm a 63 year old female and was was suffering with chronic LS, white patches, itching, burning, skin tearing and scar tissue forming, sex was totally out of the question. I started using plain cheap home brand olive oil and completely stopped using the creams that the gyro had prescribed that l found were not working at all, l just have an egg cup full if olive oil in the toilet and apply it EVERY TIME l use the toilet, massage it over the affected area leaving the affected skin just a little bit moist with the oil. Within 3 days l noticed a huge improvement, the itching, burning and inflammation was completely gone within 3 months the white patches had almost completely disappeared and the skin lesions were also completely gone as well, give the oil a try as skin is skin whether it be male or femal. Good luck Barb 😊

    • Posted

      I actually read your post about that and started using it today....I would like to get a diagnosis somehow though so I know for sure and so doctors will keep an eye on it for me...
    • Posted

      Thank you for this tip!!! I actually read your advice a couple of weeks ago and I’ve been doing it ever since. Pretty miraculous!
  • Posted

    I have the same white patches for about 8 months and they are spreading... however it's hard to see unless your looking from above so doctors are ignoring me...one dermatologist looked with a uv light and you could see where it all spread to but he immediately just said vitiligo...it doesn't look like vitiligo to me at all though

    • Posted

      Hi Jared, try the oil, l had two doctors tell me l needed a biopsy asap because there was so much white patches and it was a serious cancer issue but being on a pension money was an issue and it was almost three months before l could get to see a gyno but in the meantime l stopped using ALL the cortisone and steroid creams that the the other two doctors had prescribed. When l eventuality did get to see my gyno there was almost no white patches, no scaring, no itchiness, no swelling or inflammation and NO need for a biopsy. He was so impressed with the results from using the olive oil that he is now documenting my progress and has also now started several other patients on olive oil only treatment, no steroids or any other creams. If you have an itchiness, redness and or burning sensation and white patches you probably do have LS, you could also see a skin specialist rather than a general doctor but in the meantime try the olive oil and see if there is any improvement, cheers
    • Posted

      don't have much itching or burning except in my urethra but I also have autoimmune bladder stuff...only the white patches...problem is the skin specialists aren't taking it seriously it's so annoying watching it spread is freaking me out

    • Posted

      I am so thankful to you Hot2Trot.. on seeing another of your posts a couple of weeks ago re the Olive oil, I am now half way through my second week of using this and seeing 80% improvement in my white patches. I can’t wait to see my dermatologist on the 29th to let her know the good news! 🙏

    • Posted

      That is excellent news Jill, Just wonderful 😁

  • Posted

    Mine started the same as your's, just white patches no itching or burning that came later.

  • Posted

    hi jared, I was diagnosed with LS / BXO around 7 years ago.  The beginnings of the condition are difficult to track as my LS is, I believe, connected to the Phimosis I had from childhood - so it is possible 'the circumstances required' for the beginnings of my LS were present from around 8 YOA.

    In my teenage years no one told my about penile hygiene or the need to stretch my foreskin.  In terms of my LS 'journey' from then onwards, I think I was always applying antiseptic lotion, then the likes of baby oil and skin creams to my penis for my sexual practices.

    The situation came to a head [no pun intended] when, in 2011 I stopped working because of the huge amount of stress I was under at work {this in itself had been present for 10 / 11 years} and, I simply could no longer function productively.  In terms of penile symptomology, at this time, my penis became more and more irritated, and I constantly searched for the 'right' ointment to apply to relieve this.  Nothing ever did.  Then I got the scarring and what seemed like endless dead skin {similar to that you would have on the heal of your foot that had completely dried out} in the same area where scar tissue remained from me eventually being able to retract most of my foreskin.  This 'dead skin' was so annoying I even took a modeler's scalpel {NO, don't try this yourself, ANYONE!!!} to it and removed it for myself - but, eventually, it would come back again.  And, my foreskin became more and more irritated - then I got the tell-tale Lichen type pin-prick marking on the head / glans of my penis.

    I visited a UK GP and was given a steroidal until a biopsy with a dermatologist to rule out penile cancer revealed it was LS.  Since then I have used Clobetasol which I apply either every other day, or if I am sexually active, sometimes even 3 times within a 24 hour period. > *For others using steroidal ointment, I found you have to spend between 5 and 10 minutes massaging it into the effected area to get any real benefit from it! < 

    As I said, the complication from my teenage years was my Phimosis, and thanks to using the Clob, it is only in the last 2 years {I am now 61 YOA} that I have been able to expose {almost} the whole of my glans {other than the underside, which remains fused} and my penis now looks like an adult erect penis would normally look, for the first time in my life!

    In terms of your diagnosis, I have just been reading a post from a lady in the Solihull area I think it was who was singing the praises of Sexual Health Clinics in that area.  It sounds like you have not had the right professional advice, so perhaps, if you are in the UK, either a Sexual Health Clinic {and, no it does not have to be a STD / STI condition, only, that they look at} or a GUM Clinic at your local General Hospital {look it up as 'GUM Clinic near me' on the internet}  - Good Luck - W.D.

    • Posted

      thanks for the response it's much appreciated...I live in the US....I am circumcised and I have white shiny spots that are spreading and having white lines starting to try and connect them...I've used protopic for a few months but they haven't changed and the dermatologist just told me to try it and said he didn't know what I had...Another one said it's vitiligo but I don't know how he can tell so easily because it looks way more like pics of early LS that I've seen then vitiligo although I was hoping he's right...I'm very weary of just letting these spots spread without knowing what it is for sure...

    • Posted

      I wonder if I should apply the protopic the way you are describing the steroid cream because I don't do that at all...

    • Posted

      Unfortunately, my knowledge of LS for circumcised males is zero.  There are only specific ethnic groups in the UK who practice circumcision, and for those who have freely chosen it, it is not popular here either.  I am not aware of previous postings on here from LS circumcised males as I I only recently became aware of the existence of these forums.  Even the UK medical web sites that I first consulted on this previously suggested it was almost impossible for a circumcised male to have LS, believe it or not!

      In terms of you getting the correct formal diagnosis, having heard the wonderful ladies on this Women’s Health / LS forum, it is a question of getting to the right medical professional who can diagnose what it is you actually have.

      As I suggested before, try a medical route you have not tried before.  What options do you have?  Are there specialist Sexual Heath services you could access?  Perhaps there is a Vulval Heath specialist in your region who also sees males, occasionally, and would likely recognise what you have straight away, for example.  Thinking 'out-of-the-box', or getting a suggestion from someone else in the US and knows your health system options may be particularly helpful.

      Good luck on this …

    • Posted

      I would suggest to anyone that has been prescribed any form on lotion, ointment or cream to apply to their genitalia that they first of all need to clean the entire area first.

      Apply it working it in to each specific location the condition exists for at least 3 minutes.  Then, finish off by using more of a massage action that takes in the entirety of the region where the application has occurred.  This has to take at least 5, if not 10 minutes to do correctly - anyways, we are worth that level of attention, we have a condition we did not ask for, it is up to us to be kind to our skin so that it recovers as much as possible!

      For males with LS, it is important not to get the likes of steriodals anywhere else on the shaft of the penis, other than where the condition exists.

      The other possibility, for those not certain what condition they actually have is that an irritant can be a simple as washing powder residue left on undergarments - so, if this is a possible source, I would wash all such garments in natural soap flakes - you can get these in liquid form to go in the washing machine.  I also do my sports / outdoor activity clothing this way.  Then, obviously, change underwear as frequently as possible if this can be a source of an irritant, until you change to using natural soap flakes.

    • Posted

      did it ever hurt when you urinated or have urethra pain?
    • Posted

      Hi jared, I have only ever had pain urinating very briefly, and this cleared of its own accord quite quickly, so there was nothing I needed to do.  Do you have a sense of where the pain is?  Tip of the penis, inside your body at the base of your trunk; i.e. prostate area?

      If you do actually have LS / BXO it is quite easy to have cracked skin that can cause pain.  What is your meatus ( the very opening of the urethra ) like?  Does it look, red, agitated, at all?

      From your previous posts ( elsewhere on here ) have you implemented any of the tips I suggested, or sought medical advice from specialists?  Remind me where you are with following through what has been suggested to you?

    • Posted

      it must be my interstitial cystitis...it hurts near the end but my opening is fine...changed my whole diet...found out I was low on vitamin d so taking that...using olive an coconut oil...My GP says he doesn't know if its LS or not but there are only white spots no sores...Gonna go back and if it spreads more he said we would try a mid strength steroid to see if they went away....

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