Is there any other guys out there?

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Hi everyone... I'm Aaron, I'm 24 years old and back in january 2018, i was partly diagnosed with Lichen Sclerosus, more specific Lichen Sclerosus et Atroficus / Balanitis Xerotica Obliterans - Reason I say partly is because the skin biopsy done on my foreskin never came back positive, but only with the label: Unspecific Reactive Change. I have white/greyish spots on my glans, and my foreskin is filled with plagues / white lesions, My frenulum have been attacked too, causing it to be tight and I have frenulum breve regularly. I was initially put on Dermovate / Clobetsol Propionate 0.5% and it seems to help, although it's only thinning the skin, however when i was forced to stop, my disease have spred even further, more plaques on the foreskin and even white spots below my foreskin on the inner shaft below the glans sad 

So as i thought it was some sort of candida, I called my doc and told em i was gonna do that, and they basically just said go for it... (Getting an appointment here is a nightmare and I am in no way patient) - The most worrying part is probably that not many doctors know of this condition, there's only a few specialists and they ain't in my country. 

Anyway back to the Canesten tryout it only seemed to make the plague amount worse, so I've stopped it and went back to the Dermovate 0.5% that I atleast have little effect with. I've also tried Protopic on my frenulum breve, which actually helped healing, but I am pretty determined in having my frenulum removed, Frenulectomy because it's always swollen, painful and in general too damaged. What worries me is that my doctor says that my LS is a mild case, however I like asking more doctors and another have said, He's never seen a case like mine before, which worries me a bit. Normally the plagues/lesions should only appear on the glans or foreskin. But mine also appear on the inside shaft skin, and that's worrying. After my biopsy i had a small cut that didn't fully heal, i don't know what it is with me but scars are always sore on me. I've thought about circumcision and I'm 99% sure I'm gonna go through it, however most surgeons only do the low and tight while i need a high and tight circumcision due to my LS plagues further up the shaft. 

Now my Meatus is heavily swollen, when i pee, i pee in 2 different directions (2 stripes) sometimes. The doctors here could have done sooooo many basic tests, however they just don't want... Though living in one of the best welfare countries on the globe, paying extremely high taxes, I still have to finance my LS treatment myself, cuz all i get when visiting clinics are old docs that don't care and just prescribe steroid creams to LS sufferers all day long, like what about a cystoscopy? (Long silicone like gummy tube with camera inserted through your urethra, to see if it's narrow) 

Cuz as we all know, LS can affect the urethra in men, which is a much more complex 2 stagenoperation with your penis getting sliced head to toe, and you getting your urethra rebuild with skin grafts from your mouth. My biggest issue is that... NOBODY cares... sad 

This is a low key illness, nobody knows about it, it's auto-immune and no one can figure out anything, yet they still swear that cancer is the worst. Am not going to say cancer is not bad, no no am just saying, atleast it can be treated and atleast you know your enemy. LS tends to re-make itself in a different version, and you becoming immune to certain drugs and having to find new remedies/solutions. 

I am aware of the fact that this mostly hit women, I feel with all of you. But atleast you have eachother, as a male i feel so alone, if not for my extreme confidence in life in general, and my slightly arrogant way to approach things, I think i'd jumped of a cliff long ago. 

I'm a member of the official Lichen Sclerosus Care in my country, there's 3 male members, including me. And when you add the fact that most men don't wanna debate such with eachother it's pretty tough to even get somewhere. 

Fast forward I have researched Stem Cell Theraphy, so i contacted different docs that do that in US. 

One says that in order for my LS to cure we need to use my foreskin as some sort of collector, cuz you can only heal skin, with sound skin, diseased skin doesn't heal. 

Another says, I can only get referred to him when I am circumcised, In general most doctor seem to advise circumcision.

My only worry is that my scar from the biopsy didn't heal well and is sore, just a small cut... 

I'm worried my circumcision scar line will be whack, this one stem cell doc, says i can only get circumsised after my LS is cured with stem cell theraphy. 

and a circumcision now will not heal well, and leave my cut with open edges. 

I'm just confused, when the supposed to be experts in the field can't even agree on the color Red, it makes it hard. 

I just wanna have my life back, that's all. 

I hope some of you males wanna respond me and share your experience, if some of you have managed to cure it partly, that would be a huge boost for me. I'd also like to hear from uncut males who got circumcised due to LS, my foreskin is getting tighter and i can't retract it all the way down, due to the hard ring who's pressuring in and tightening around my shaft, plus the plagues hardening my frenulum. 

So, if anyone have had a circumcision due to this or a frenulectomy aswell, kindly let me hear from you. 

I need my life back, doctors don't care, we're our own doctors now. 

All the best to all of you strong people out there suffering from this and god bless you! 

Aaron

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  • Posted

    Obviously any answer will be appreciate, male/female, 🙂

    Thanks for your time.

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    • Posted

      Hey Aaron, I posted a crazy long message but it's being moderated and I then PM'd you but that might also be moderated?! Anyway, if you don't get anything let me know.

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  • Posted

    Hi Aaron

    I am so sorry you are going through this , you are the same age as my son.

    There are other men on this site because they have been involved in conversations . I can understand how desperate you feel , this is a very lonely disease . 

    As we have gynaecologist s for us ladies , you need to find yourself an expert in this field , dies your local hospital have a clinic . The standard treatment is Dermovate , which appears to work really well in most cases , although it takes a good two to three months to settle initially . Most people have managed to live their lives ok , with the odd flare up , some people seem to get it in remission for years . There is hope , please don’t give up , you just need to find the right doctor to help you , someone who preferably knows what they are doing with this . You will get some anazing advice on here , I am sure there will be more replies to you . Jane xxxxxxx

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  • Posted

    Aaron, okay you are not alone! I know it seems like that but I am also a male with the same horrible condition and have had it for 3 years but literally only diagnosed as LS in the past 2 months. LS seems to affect everyone slightly differently. I have it only on the head of my penis and my main condition is extreme dryness, itch, burning, peeling skin etc. You are right when you say doctors don't know much about it. They know f*** all about it and it infuriates me that they are all pushing circumcision as an answer, more on this later.

    I first started noticing something was wrong with my penis around 3 years ago when my frelenium started developing a small tear and it was incredibly painful pulling my foreskin back. I went to my local STD clinic and had swabs and blood tests done only to have everything come back as negative. They did however say my condition was thrush. I then went to my local doctor who prescribed different types of thrush treatment over the course of maybe 6 months. Nothing seemed to fix my condition. He said my only other route was a circumcision. I was very very reluctant to go down this route so many different reasons so for the next 2 years I tried everything imaginable in order to try and cure the condition. Nothing seemed to work. It was only last January that I decided to go back and get another STD checkup that the doctor there said she was only back from a conference in London where a professor in dermatology gave a lecture on the penis and the many different conditions that can affect it. She said she was blown away with him and his knowledge and the fact that he doesn't work with women, only men and he focuses on the genital area. I immediately looked him up and I booked an appointment with him in his London clinic. he literally took one look at me and instantly diagnosed me with LS. I remember crying as he said this as finally I knew what I was dealing with and it made sense that it wasn't thrush as nothing I took for thrush seemed to have any affect. He put me on Dermovate for 1 month twice a day and he said that if this didn't work, I would most definitely need a circumcision. I tried Dermovate for 3 weeks but it seemed to aggravate things more so I stepped down to Betnovate which is a bit weaker. Again this was aggravating things. At the moment I am only using E45 cream and I have to say it's having a great affect as it's keeping everything moist and not aggravating the condition. Whenever I get a flareup I use the Dermovate once which instantly calms everything down again.

    Anyway onto much more exciting news. Something always felt very off with getting a circumcision to treat an autoimmune disease to me. It didn't sit right. It was the equivalent of having a nail stuck in your foot and going to the doctor and the doctor prescribing you with a lifetime worth of pain killers in order to carry on with our life and not feel the pain so much as opposed to looked around your body and finding the nail and pulling that out and letting your body heal. Okay maybe not the best analogy but I think it makes sense, somehow?!

    This got me looking around and I found a doctor which practices functional medicine. Functional medicine will look at the symptoms but then dig deeper and trace those symptoms back to the actual cause and then focus all their effort on fixing that cause. I found a doctor in Dublin who specialised in this area and I went to see her last week. She was amazing and although I need to get loads of tests done this week blood, fecal, DNA etc etc and then wait for the results. I already know I am on the right course of action. After talking to her I have realised that a lot of things that I took for granted over the years and thought they were just me, being me were in fact autoimmune symptoms. I get itchy painful skin a lot of the time and never thought much of it, I get extreme exhaustion a lot for no reason, if I have so much as one beer I am guaranteed a hangover the next day etc etc. All of these I took for granted as being normal until she pointed out that they are all stemming from my immune system and very much from the same source as my LS. She is convinced she can fix my immune system over the next few months which will in turn fix my LS and she's had a lot of success with other patients and after 6 months their LS has gone into remission. I mentioned the circumcision to her and she actually laughed. She said that was a ridiculous solution. She said that getting a circumcision might alleviate symptoms on my penis but meanwhile deep in my body it's tearing itself apart and potentially developing an even more serious condition.

    So yeah, that's where I am now but I have to say I am more hopeful than ever before. Anyway Aaron, all I want to say is that you are most definitely not alone in this horrible horrible nightmare. Please feel free to PM me or post here if you need to talk to anyone. We'll get through this and obliterate this condition.

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    • Posted

      Hi, I enjoyed reading your post and I agree with much of what you say.  Is it not the case that often finding the right doctor is the first step to healing and it sounds like you have done that.  Keep us posted on how you get on.
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    • Posted

      Hey Jane, her approach is amazing and I have an extremely positive feeling about the whole thing which I haven’t had in years. Not sure if I said anything about this in my post and I’m too lazy to re read the whole thing again but she is nearly convinced I have a parasite in my gut which is flaring my immune system and in turn causing my LS.

      The clinic is called Invigorate and it’s run by Dr Fionnula McHale. As far as I know there is also a London branch of this clinic. If you don’t find it on google, pm me and I’ll send you all the details smile

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  • Posted

    Hi, I'm female but I know that some guys post on here.  Your doctor doesn't know what he is talking about when he describes your LS as being mild, because it doesn't sound that way at all, and in any case, LS changes and evolves from mild to severe, and from severe to mild..that's how it goes.

    In your shoes, I would look at circumcision sooner rather than later.  But first, go to the search at the top and look for the thread that might help you.  It is called 'An experiment with Borax'   Many people have had good success using borax and I'm thinking you should give it a go before going down the circumcision route.

    Have you read much about diet? how that can impact LS?

     

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  • Posted

    I care Aaron!

    Look for the thread on here about borax, which plenty of women are finding to be a successful way to get rid of their LS .

    Thinking of you

    Julie

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  • Posted

    Aaron I think it was meant to be that I find your post! I’m a 28 year old guy, diagnosed with genital LS only 4 days ago.. and I’m freaking out.

    I can seriously relate to the anxiety you’re experiencing. It being such an unknown and progressive condition is making me freak.

    My Urologist even said he was pretty unconcerned when he diagnosed me. He even told me just to moisturise and that maybe in 10 years from now I might need a circumcision.. but after reading up more on the condition and it’s prognosis I’m beginning to realise how dangerous that advice is!

    Where are you based? I’m in the UK and from what I can see there aren’t many people who offer stem cell therapy for male LS sufferers.

    I think I’m going to opt for circumcision sooner rather than later. Firstly for comfort, but also in a handful of people circumcision has seen a regression and even remission of symptoms. So I figure it’s worth a try. Another bit worth mentioning is that many researchers believe LS in men is caused by regular urine irrigation of the foreskin and glans, which is why circumcised from birth sufferers of LS are rare. Circumcision will make the maintanance a whole lot easier I’m sure.

    If you want to connect properly then please do DM me! It sounds like we are both at similar stages with LS and it’d be great to have someone to discuss treatment with and compare notes smile

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    • Posted

      Have you been treating your condition for more than 4 days.  Wanting to opt for circumcision if you have NOT been treating your condition for more than 4 days, is, to me, very radical. 

      First, you need to find the right steroidal treatment that is right for your skin.  Clobetasol is best for most LS sufferers, the Brands most common are Dermovate and ClobaDerm - you need to give these at least 6 to 8 months of working properly on your skin - and if this is not the right one, get advice from a Dermatologist until you have found the right steroid ointment / cream right for your skin. 

      I would say opting for circumcision should be something you  would consider after 8 to 10 months AFTER you have found a steroidal regime that actually works for YOUR skin!

      Check-out my reply to Aaron in this forum discussion for guidance on hygiene and other very important stuff you should be aware of ... Good Luck - I am in the UK too!

      I prefer not to be PM'd - as I find it difficult to follow lots of conversations in different locations ....

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    • Posted

      Hey Lugaluga,

      I’m also a male 37 suffering from LS. I agree with Dugie, going straight into circumcision after 4 days is very extreme unless of course it’s something you were going to do anyway. Remember that LS is an autoimmune disease and getting a circumcision will only alleviate symptoms on your penis if it works whilst your immune systems internally continues to attack your body.  I spent three years treating my penis with creams ie steroids etc. I am now going to focus on the core issues, my immune system.

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    • Posted

      Thanks for getting back to me Wee Dugie.

      Your right to recommend not rushing to get a circumcision. I haven't started my treatment course yet as I am waiting until Tuesday for my appointment with Dermatologist. So from then I will hopefully start my steroid course. Will this help loosen the foreskin 'ring' that comes with the condition?

      I guess my eagerness to get the circumcision comes from a couple of factors. 1. I have suffered from post micturition dribble (small bits of urine leakage) since as far back as i can remember. I think this has been the main reason I've developed BXO. So no matter how thorough I am drying after going to the toilet 5 - 10 minutes later I will undoubtably have a small leakage, which gets trapped by the foreskin.

      Also, any insight into how this might affect my sex life would be most appreciated. Prior to this diagnosis I was very sexually active. Obviously right now my priority is my health but have you found it possible to still have a rewarding sex life once treatment has began?

      Thanks again for taking the time. Cant tell you how much its helping talking to another LS sufferer

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    • Posted

      Definitely. I'm planning on recalibrating my immune system to see some resolve. I suffer from IBS, allergies and Eczema so am very prone to autoimmune issues. 

      How are you looking at addressing your immune system? I've read a lot about repopulating gut flora, as 70% of the immune system is in the gut. 

      I've got another question on LS if you dont mind? I'm currently getting the sensation of needing a wee all the time and when I go do its mildy uncomfortable. similarly to the sensation of a UTI. The flow of urine is fine and not obstructed. But do you think this could be linked to LS? I'm slightly freaked out that this could mean I have it in my urethra.. as I know this can be quite a hard to deal with complication 

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    • Posted

      Hey Lugaluga, I went to see a specialist doctor there last week and she is nearly convinced from all my symptoms that I might have a parasitic infection in my gut and now tomorrow I am going for to do a fecal test as well as a DNA test and from those results I should know more. I thought I had heard it all on LS until this doctor mentioned to me that a very common occurrence in autoimmune issues is parasites living in your gut which leak toxins into your blood. All these toxins makes your immune system react and over flood itself with white blood cells which in turn attacks the body itself causing all sorts of immune conditions such as LS. So yeah I am very hopeful she finds a whole football field of these little parasites that she can then eliminate.

      Now in relation to your wee and that linked to LS, that I am not sure of. I am however also worried that my condition will spread down my urethra and cause complications which might involve the need of surgery but that's literally thinking the worst and I know it won't get to that. I don't think I'd be too worried about it mate but I would probably have it checked out if you can by a specialist in that area.

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    • Posted

      Yeah I'm hoping its just a mild UTI and nothing much to worry about. LS in the urethra is a terrifying thought, maybe my anxiety is getting the best of me (as it so often does!).

      That sounds very interesting about parasite involvement, I'd love to know how you get on with that and what they find 

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    • Posted

      Yeah I was instantly gripped when the doctor mentioned this to me as I've never heard of it before but she has successfully treated LS before and send it into remission in patients after finding this parasite living in the gut. I also sometimes suffer from itchy skin, painful sensitive skin, and exhaustion as well which are also symptoms of this parasite so all fingers crossed now that it does indeed end up being this parasite. Doing the test tomorrow and I think it will take around 10 days to hear back the results.

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    • Posted

      Hi Tweetmepete, thanks for highlighting the real culprit in many conditions such as LS is the attack our modern way of life has a severe impact on out Autoimmune system.  I also have Chronic Fatigue Syndrome and believe it or not when initially replying to Blazingheart I could not bring that information to mind (Autoimmune stuff I mean), that is how bizarre my condition is.

      Pleased to say I can control my LS / BXO with Dermovate - but as some would suggest sometimes having to use it twice a day when I am sexually active is too much steroidal at a high-potency level - but pleasure has never been any better as I have also struggled with Phimosis, Premature Ejaculation and Inability to maintain an erection over a period of several decades!

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    • Posted

      Oh god she said there are 2 main culprits but for the life of me I can’t recall as their names were very long and I instantly forgot. I will be in contact with her next week I’d say and I will find out and post it here. 
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    • Posted

      Wow!  It sounds like you are currently visiting all the penile issues I had been struggling with for years!!!  So logistically:-

      > I would strongly recommend no further thoughts on circumcision for at least 9 - 10 months.

      > Hopefully, Dermovate (Clobetasol) will be the right steroidal for your skin.  If not, stay in close contact with the Dermatologist to find the steroidal that is right for your skin, and the level of condition you have.

      > YES, while you may have had considerable tightening of the foreskin / swelling of the glans, Clobetasol (or alternative) will help you deal with this!  Give it a few months - do simple stretches when you are applying the steroid ointment - VERY gently at first, then as the steroid starts to have an impact you will find you can be more adventurous with different stretches.  Also, use more of a massage action once you have the right steroid / frequency of applying it sorted out - to ensure you are getting the most from the action of the steroid.

       - The most simple stretch is to draw the foreskin as far forward as it will COMFORTABLY go.  Easy does it to start with.  Then again, as you make progress - add slightly more force every few weeks.  The next stretch (steroid MUST be working at this point, or, no-go!) is to draw the skin of shaft of the penis towards the body.  Build-up slight increments in force every month or so ONLY if your are progressing well with the steroid.

      > I have been there with having just urinated and a few minutes later there is urine running down the inside of trousers, shorts or jeans.  Not recommended!!!  You must look up Kegels for Men!  Do them regularly from starting from 10 repetitions - until after a few weeks you are doing 50, then a 100, then use minutes, repetitions of 2 clasp and hold, 2 relax.  Then add on another minute every week or 2.  The best time I found doing them is when driving your car.

      *The best is if you can learn to tense and relax ALL the muscle groups from the bottom of your stomach, right the way round the back of your scrotum to your anus.  Focus on the PB muscle group, once you have discovered how to tense and relax them.  When you have fine-tuned this muscle group you can actually STOP yourself ejaculating, no matter how aroused you are!  Believe me, it is more than possible for any man to learn how to do this!!!

        Once you are into your PB Muscle training (male kegels) regime you will be able to rid yourself of the urine dribbles for life!  Believe me, I did it - no more urine down the inside of my trousers, for sure!

      > I hope that gives you REAL momentum to making progress and getting back to a very enjoyable sex life.  I did it, so unless you have 1 complication after another, you can too!!!

      *** For anyone using Dermovate / any steroidal ointment for LS / BXO, I would highly recommend spending time ensuring the ointment is worked well into the skin.  For Men, as we have a relatively limited area to deal with (luckily, compared to women) it is essential to build pressure in applying steroid ONLY after a period of a number of weeks, and, ONLY if you have no adverse reaction to the steroid.  If you have, get advice on finding the right steroid for your skin / condition severity, from a Dermatologist.  Good Luck .......

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    • Posted

      seems we are talking on two different threads! But wanted to feed back to you on the points you made here as well.

      I'm definitely going to give the Steroids a fair chance before any drastic circumcision decisions. Seems a lot of men have had significant relief from Phimosis via these creams, and the stretching (obviously once inflammation is controlled!!) sound like a good idea too.

      The dribble issues are so annoying! I actually read somewhere that some researchers believe the constant dribbling and urine irritation on the foreskin and glans (of uncircumcised men) is the main cause of BXO. It wouldn't surprise me at all if this was true.

      I'm going to try these exercises on my commute to work each day. Should get some funny looks from people on the tube as I pull my tensing face lol

      " I hope that gives you REAL momentum to making progress and getting back to a very enjoyable sex life. " Me too!!! I think this has been the biggest mental mountain for me so far... feeling like my sex life is RIP. SO relieving to hear that that doesn't have to be the case

      Thanks again for all your advice

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