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Any Men with LS on this site?

Posted , 8 users are following.

Tweetmepete
Tweetmepete

I am a 37 year old man and I have recently been diagnosed with LS on penis glans. I am absolutely distraught, not only with the confirmation of this horrible disease but distraught after going through years of treatments for what everyone thought was thrush. I have so much blood taken along with swabs that I have lost count. It has affected every part of my life and I am becoming more and more depressed by the day. I would love to talk to other men with the same issue, although women with the issue might also be a help but I'm not sure if it differs from men to women.

I think stress brought this on me in the first place around 3 years ago when we were renovating the house but I can't be sure.

Any advice, help, anything would be such a huge help as I feel I'm on the edge.

0 likes, 31 replies

31 Replies

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  • matt45876145
    matt45876145 Tweetmepete

    Posted

    Same boat mate... Unable to give a full reply at the moment... But I can say it's manageable and lots of reasons to have hope. With the right treatment and life style choices, life goes on. I'm just coming out of a major flare up, but everything works and my new girlfriend is very supportive and happy with how everything works! x

  • eamonn58740
    eamonn58740 Tweetmepete

    Posted

    Well mate I've been dealing with it for over a year now and a mixture of antibacterial wash morning and night a barrier cream and dermovate ointment has almost totally cured my symptoms which were horrific at one point. I totally get the fear though man and if I can be any support let me know I'm 34 so get how you feel

  • Tweetmepete
    Tweetmepete

    Posted

    I can’t say how comforting it is just to have 2 men reply with the same condition.  

    My main symptoms are extreme dryness on the head of my penis, which is very sore, itchy and has a burning feeling to it. If I leave it without any moisturiser, I get Balanitis which was confusing the whole thing for years as that came with its own symptoms.

    I tried Dermovate for 3 weeks but it didn’t seem to relieve the redness especially on the base of my glans so I started using Betnovate. Again that didn’t help so now I am simply using an emollient and seeing how I get on.

    My dermatologist is pushing me to get a circumcision which I am extremely reluctant to get, mainly because of the whole procedure but also the fact that it might not cure the condition at all.

    I’d be extremely interested in how you guys are dealing with it with your life choices etc? The anti bacterial wash for eg, never heard of that being used before.

    Thanks again!!

    • matt45876145
      matt45876145 Tweetmepete

      Posted

      I'm going to see a specialist next week to consider circumcision... And to be honest I'm all for it 75% chance of complete cure.

    • eamonn58740
      eamonn58740 Tweetmepete

      Posted

      I had the redness then it left but my foreskin was literally turning to scar tissue and had got so bad anytime I had sex it was splitting now I'm almost totally symptom free and my skin has turned back to a normal pink colour.

      My routine is dermovate twice a week maintenance , dermol 500 lotion as a soap substitute literally every morning and evening before bed I use this was and after the gym work etc and then cetraban lotion as the barrier cream.

    • Tweetmepete
      Tweetmepete matt45876145

      Posted

      I actually didn't know it was a 75% chance of curing it. I might have to eventually do this but I have a massive phobia against surgery and having a part of me cut off. I'd be very interested in hearing what the specialist has to say to you. Is there different types of circumcision where they cut off less skin or more skin or just one type?

    • Tweetmepete
      Tweetmepete eamonn58740

      Posted

      Hey Eamon, thanks for telling me your routine. I used Dermovate twice a day for 3 weeks which might not have helped things as I feel it was irritating me too much but it's interesting to hear you say that you use it twice a week only. The Dermol lotion, is that like E45 wash? Is the Cetraban like Vaseline or is it a very different product?

      I will pick these up over the weekend and see how I get on I think but I already have the E45 wash and Epaderm Ointment so I'm very curious as to what's so different about what you're using.

      Sorry about all the questions and thanks so much for sharing!

    • eamonn58740
      eamonn58740 Tweetmepete

      Posted

      No worries mate firstly are you in the UK cause your Dr should have written you a prescription for the items you need. When I got diagnosed the consultant set me up with this routine as far as I know e45 wash isn't a microbacterial wash so I think that's the difference between it and the dermol 500. If you're in the UK mate get back to the doctor sounds like you were misdiagnosed for ages which prob made it worse and it can be an expensive routine to maintain might as well get it on prescription.

    • Tweetmepete
      Tweetmepete eamonn58740

      Posted

      No I'm in Ireland. I was set up with an E45 wash and then the barrier which was Epaderm. After reading up on it, I think we might have pretty much the same stuff although yours is anti-microbial.

      Actually did you have a biopsy done or did they simply diagnose it visually?

    • eamonn58740
      eamonn58740 Tweetmepete

      Posted

      Ireland mate lol me too well Northern Ireland. Oh I had the biopsy done which wasn't the most pleasent moments of my life how about you ?

    • Tweetmepete
      Tweetmepete eamonn58740

      Posted

      haha yeah from Ireland. I feel like the only man with this condition in the south anyway! lol I was all set for going for a biopsy but before I went I decided to go to get my STIs checked just to be sure it wasn't an STD I had and the doctor there mentioned she had just been back from a conference and was blown away with a talk she had been to by a Professor from the UK called Christopher Bunker. She said he was a specialist dermatologist that only dealt with men and especially issues with genitals. I went over anyway and he took one look at me and diagnosed me straight away. I asked him about a biopsy and he doesn't recommend them as he said they don't always work and the procedure is pretty traumatic. For a while I thought of still have one done but I think it's safe to say I have LS from all the symptoms etc.

      Did you find the procedure horrific?

  • jane63639
    jane63639 Tweetmepete

    Posted

    Hello Pete , I was diagnosed myself on Tuesday totally distraught , just trying to come to terms with it , look at sky the threads and chat to everyone there are fine great people on here xxcc
    • Tweetmepete
      Tweetmepete jane63639

      Posted

      Sorry to hear that Jane! It's hard to deal with alright. I keep telling myself that it could always be worse news but it's still no comfort from the pain and discomfort this F**** condition is.

  • dani8979
    dani8979 Tweetmepete

    Posted

    I am sorry you have to deal with LS....affects people emotionally and physically. Beside the treatment with steroid cream, barrier cream you need to look at your diet. LS is an autoimmune disease and cutting sugar and wheat will help you, also find ways to manage stress levels...ways to relax, meditate etc.

    I wish you well

    • Tweetmepete
      Tweetmepete dani8979

      Posted

      Thanks Dani, I haven't looked at my diet at all yet but I do live a pretty healthy diet but maybe there is something I am allergic to which isn't helping. I feel my main issue however is stress.

    • dani8979
      dani8979 Tweetmepete

      Posted

      Find ways to relax...I do yoga, pilates, meditate, gardening anything that relaxes you. Stress is a major trigger for LS...Sugar is also a big player in LS. My LS came along with diabetes....

      Need to treat LS from inside out.....no processed food and limit the amount of chemicals you are eating, organic is better....

      I use a holistic way to treat myself, use the steroid cream but also oils, lavander oil, olive oil, avocado oil with calendula matricaria essential oil, castor oil. I take Vitamin D3, grapefruit seed extract, selenium, turmeric, biotin, glucosamine condroitin, B 12 one a day, Vitamin C, iron, magnesium.

    • Tweetmepete
      Tweetmepete dani8979

      Posted

      I am going to focus a lot more on my mental health over the next few months which is going to be very hard as work is up the walls but whether it's the cause of my LS or not, it can't be any good for it.  Can I ask, with you doing all of this, is the condition practically gone or is it just relieved somewhat?

    • dani8979
      dani8979 Tweetmepete

      Posted

      I learnt to control it....I no longer stress about getting a flare, I know what to do...LS flares up if you do not keep the area moist at all times or the treatment you are using is not good enough, or because of too much stress, refined sugar is also a culprit. 

      Coming to terms with the illness, managing it....some women go into remission with LS, for how long no one knows or if it will return again. I never really heard anyone who got rid of LS for good.....it is treatable but can not be cured.

    • Tweetmepete
      Tweetmepete dani8979

      Posted

      Thanks for the advice to keep area moist at all times. Will make sure I do that.
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