Male Genital (Penis) Lichen Sclerosus

Posted , 25 users are following.

Hi there. I'm 41 years old and I have recently been diagnosed with Male Genital (Penis) Lichen Sclerosus. I'm currently experiencing a 'flare up' with a very dry/tight foreskin and white spots on my glans. I'm seeing a dermatologist about it, so I'm dealing with it.

The biggest problem I have is the lack of information and support about this for men. Are there any men out there that can offer me some reassurance, advice? I've recently met a woman that I'd like to have a long term relationship with, but this condition has left me with many doubts. Certainly at the moment sex is out of the question and it's not a pretty sight down there. Don't know what to do, just need to hear other men's experiences.

1 like, 38 replies

38 Replies

  • Posted

    Hi Matt, there has been one or two men post on here in the past but not for some time.  I think if you use the Clob cream you should get some relief fairly quickly.  I dont know if your aware but diet plays a role with this condition.  Sugar is a killer for LS, especially when flaring like you are now.  Best advice would be to cut out sugar as much as you can and make sure that you are free from candida (thrush) which I think causes LS flare it.  I take a Diflucan every four months as a preventative measure.
  • Posted

    HI Matt, I'm a 72 year old woman who was only diagnosed about six weeks ago. I've spent over 30 hours reading everything I could gt my hands on. I started with discovering a young woman on this site about 2 years ago who discovered the relationship to Vitamin D deficiency. I instantly started taking 3 chewables a day, 15,000 total. which alsmost immediately took the pain down and then whie as well.  I'm about to pot a long article on my discoveries - for your instant help... what I've pieced together is that LS is an autimmune disease, no longer in doubt and that means that it makes no matter if you are male or female, the solution is a total autoimmune diet protocol - which is in fact mostly a candida diet. I'll post as soon as I an about the supplements that bring this ting to halt. but for the moment bet yourself to a health food store that sells Vitamin D and preferably with K2 added since this is going to be a long road and we don't want to imbalance something else!  ALSO pick up vitamin C and grapeseed oil extract which has 50X antioxident capacity as vitamin c.. oh and CASTOR oil has fabulous healing capacities behind it so use it for all your parts. oh gosh, I could go on... will post soon on a new link.   

  • Posted


    From the American Jouranl of Pathology we learn that, " Autoimmune diseases affect ~8% of the population, 78% of whom are women. The reason for the high prevalence in women is unclear. Women are known to respond to infection, vaccination, and trauma with increased antibody production and a more T helper (Th)2-predominant immune response, whereas a Th1 response and inflammation are usually more severe in men. This review discusses the distribution of autoimmune diseases based on sex and age, showing that autoimmune diseases progress from an acute pathology associated with an inflammatory immune response to a chronic pathology associated with fibrosis in both sexes. Autoimmune diseases that are more prevalent in males usually manifest clinically before age 50 and are characterized by acute inflammation, the appearance of autoantibodies, and a proinflammatory Th1 immune response. In contrast, female-predominant autoimmune diseases that manifest during the acute phase, such as Graves’ disease and systemic lupus erythematosus, are diseases with a known antibody-mediated pathology. Autoimmune diseases with an increased incidence in females that appear clinically past age 50 are associated with a chronic, fibrotic Th2-mediated pathology. Th17 responses increase neutrophil inflammation and chronic fibrosis. This distinction between acute and chronic pathology has primarily been overlooked, but greatly impacts our understanding of sex differences in autoimmune disease."      I certainly can't speak to the hormone specific support that is needed that your integrative doctor will be able to help with... but until you find such a trained person, this quote should tell us all that reading up on general anti-inflammatory diet suggestions and autoimmune diet suggestions will aid either gender.

  • Posted

    an article from webMD notes back in 2010,  " Aug. 23, 2010 -- There is now biologic evidence to back up the belief that vitamin D may protect against autoimmune diseases and certain cancers.

    A new genetic analysis lends support to the idea that the vitamin interacts with genes specific for colorectal cancer, multiple sclerosis, type 1 diabetes, and other diseases, says Oxford University genetic researcher Sreeram Ramagopalan.

    The study is published in Genome Research.

    When Ramagopalan and colleagues analyzed the binding of vitamin D receptors to gene regions previously identified with different diseases, they found evidence of increased binding for multiple sclerosis, Crohn's disease, lupus, rheumatoid arthritis, colorectal cancer, and chronic lymphocytic leukemia (CLL).

    "Genes involved in autoimmune disease and cancer were regulated by vitamin D," Ramagopalan tells WebMD. "The next step is understanding how this interaction could lead to disease."

  • Posted

    Hi Matt, Im a 40 old men, Was diagnosed by LS about 3 years ago I guess. I started to see like a small red spot in the shaft skin that I tought was like an irritation and tought it was going to dissapear. But what was interesting is that on night when sleeping I used to have a lot of itching on the shaft skin exactly where the red small spot was located. I tried to totally ignored, then like after 3 days i start seeing that other red areas started to appear and I had itching so I started to looked over the internet and realize that the only thing I was getting into my head was horrible diseases. I went to see the urologyst and he saw the spots and he said, ok first we need to discard that this is a skin fungus so he prescribed me some medicines for treating that. He said that I had to wait about 2-3 weeks to see if the read areas started to dissapear. After 3 weeks I came back to see him and he said: "Ok, normally when you give this kind of treatment and a fungus doesnt disspaear then you can have a stronger fungus that we need to know exactly what medicine is used to treat that and for that we need to make a biopsy, and also from the biopsy we can detect if this is a Lichen. 

    I had the biopsy procedure done and after 1 week he called me and gave me the results: "Lichen sclerosus et atropicus penile". He said: ok, now that we know exactly what it is lets treat that asap because the idea is to have always LS turned off in order to avoid skin damage. He prescribed me Elomet that is a steroid cream Level 2 and he said just use it for 8 days apply it once in the morning a very small small cover over only the red areas and again at night. So interesting after day 5 or 6 I started to see how the red spots become smaller and smaller and suddently by day 8 the skin was perfect.

    He said, ok LS is unpredictable it could appear again in days or months or years, and the idea is to give small applications of steroid because we have learned that when you use more steroid then it can become more agresive over time.

    I was 100% perfect for about 6 months and then one day I saw again a small red area and I started to have itching there. So I get again worried, thinking the worst of the worst you get like sad and depressed but I went to see the urologyst again, he told me dont worry apply again the same medication for the same amount of days as the last time. So I did it, and same result and exactly after 6 or 8 months after that again, other red spot. Now this time I went to see a Dermatologyst that found on the internet that had experience treating LS, so this time she first told me: Dont worry and dont get panic, you can find over the internet a lot of wrong information or exagerated information that LS can lead into cancer, she said, it could but in order to get a cancer that is like veery very very very extreme strange and that over all the years that I have as a doctor I havent seen a patient having cancer because LS, but in order to avoid these we have to keep LS turned off. So I liked that both Urologys and Demartologys said the same but she also asked me to give her the results of the biopsy and the sample skink because whe wanted to give that to the best person that can see if this is really LS or other thing like a very extreeme fungus. (Btw I havent sent her that results and skin sample, I just remember I have to send that to her smile ). 

    Anyway she told me to apply now a different cream so she recommendme Clobestol (a steroid cream) but she said please apply that for 1 month, dont worry about applying that for long periods of time but apply that only once at night. These time the red spots were bigger because I leave like many days without going to see a doctor. Well I started applying this creme and honestly i didnt follow the prescription at all so I just apply that like for 12 days and I stop to because no red spots in the skin. Ohhh I also remember she said, after applying 1 month of clobestol you will be using 3 times a week a protopic cream thats name is Trocalimus. I read a little about it and I get scared because it said using Trocalimus may lead into cancer, we know that labs tried to write all the side effects about something in order to avoid any lawsuit but I get panic so I applied it only one day and really you feel like burning all the time. I called her and told her that Im worried about using that and that I was feeling burning in the skin, she said dont worry thats a normal effect and can last for about 1 week after that then you wont feel anything, and also she said Im not going to prescribe you something that can generate a big trobule later. Anyway Im very stubborn and I didnt use the Trocalimus cream any more. Today is like 6 months after the last episode of LS and Im very good.

    So from these time my experience is that first dont get panic. Dont worry about stuff that you can't control, just do what ever you have to do but dont think in the end of the world because that wont help. If something is going to happen is going to happen and it could be a heart attack or anything else so dont think you will die because of this or that you will get penis cancer. The true about this is that you have to have the LS sleeping because yes LS affects skin. About sex yes it affects that but if you have a mature relation and a smart wife or girlfriend they will understand it, if not then its not your problem its theirs. Life is not about sex, this doesnt mean you cant have it but it will be limitted sometimes. I know there are people that only think about sex all day, sorry for them because there are tons of things that are great in life, I not try to say you are going to be a Tibetan monk smile.

    Also I have read abour PRP (platelet plasma rich) treatment and also stem cells that they say is a great treament. There is this clinic from Dr. Newman where he said his treament is so great for LS. I called there like 1 year ago and they told me that for women this treatment seems to work amazing but for men they have only treated like 3 or 4 without great results. So you have to be careful about what you read also.

    Then there is a italian Dr. named  Francesco Casabona where he claims that his treatment is the best. His treatment is PRP and what I have read over the internet is that is not so great for treating LS, anyway he wrote me about 6 months saying that he have treated tons of men with LS having amazing results. You have to be some kind of suspicious about what they say and what they write in their websites. The only way I would get a treatment like these is having a conversation with a real patient that had LS before and after he is perfect because of the treatment. And honestly I havent found anything about it on the internet (including forums). We have to consider also that LS in men and someone else said in this post is very rare. LS is a lot much more common in women than in men.

    So Matt please feel free to post here to me or to anyone your experience and your progress because just having this kind of knowledge base is the only way to try new things that have worked to others.

    Ohh forget btw, I remember I also bought this cream from Perrins and I used one time before going to Dr. and for me it didnt work. I also have tried Emuoil and the same. The only ones that really have worked are the ones with steroid creams. What is a fact is that the next time LS appears (i hope this time would appear after many more months or years) I will try taking vitamin D as many here have said they got good results. And also I would like tro try Borax powder for a next time just to see if something else besides steroid creams work.

    Keep in touch and anything we can advice feel free to ask.

    • Posted

      Hi Alex1

      Thank you so much for writing up such a complete report/experience for us all to learn from.  I see at the very end that you would like to try Vitamin D the "next time" etc.  My suggestions woudl be not to wait to get an outbreak again, but to use it as a preventative - a nutritional lifestyle choice - perhaps if there is no deficiency then it won't come back for may be years inbetween instead of 6 months?? don't know - just surmising from talking with my integrative doctor. 

    • Posted

      Hi Nancy, mmm I think you are totally right. I will start taking Vitamin D. How much units do you recommend to take per day? Yeah would be amazing that it wont come back like in 10 years or more smile

      Appreciate it so much!!

    • Posted

      good evening, Alex.  That will eventually depend upon each individuals blood status.  My experience is that once I read here a few weeks ago that one woman put her LS in remission with Vitamin D I instantly got some (I had run out - my cardiologist had said to take it, and I had let it run out - my bad).  I had learned a few years ago from my Physician Assistant who went to a conference that the newest intel is that the worldwide deficiency is so great and affects so many diseases that the new standard should be about 5,000 to 10,000 for optimum health. geesh. SO, before I could get an appt with my integrative cardiologist again, I felt confident that I should be able to take 15,000 to work on this horrible disease.  I got better, not complete - but no itch etc.  So I have to tell you, for me personally I backed back down to 5,000 (one chewable) a day after 2 weeks... well eating humble pie here... I thought wow- I took care of this emergency jsut fine - ha... i just recently felt a twinge/tickle again.... dang. So i'll go back to 15,000. BUT, and the admin will appreciate this comment I hope. TWO POINTS actually. One is that we all need to work with our physicians and keep up with getting a CBC panel to find out our vitamin D status. The standard medical rule of thumb is that anything 30 ng/dl and above is okay. WELL, NO.  The integrative medicine books and articles I have read have said that true health is not obtained until your serum(is that right term?) levels have reached between 70-80 ng/dl.  Above 90 however is shown to be counter-productive. Anyone with an autoimmune disease (which LS has been confirmed to be as of 2012 medical study)  has a major  deficit of vitamin D.  NOW, part 2. so it's safe to go ahead with whatever amount you feel comfortable with until you can get another doctor appt to confirm, BUT you all need to think in terms of CO-FACTORS to ANY supplement you are considering taking. This is where the tire meets the road. If some doctors who never studied nutrition/biochemistry whatever declares that vitamin D is a toxin at such and such a level because one person had such and such a reaction... it is entirely possible that those people who have reactions to whatever have NOT done their due diligence to learn the INTERACTIONS between other biochemicals that keep these AMAZIng bodies alive.  SO, Alex I went off to visit my family for Christmas/New Years with only the knowledge about Vitamin D3.  I came home to study up like crazy. Here is what I've learned the last couple weeks: Vitamin D3 is the best form of D; Vitamin D3 requires a bit of K2 to do its work best; Other co-factors of Vitamin D are Vitamin A and also Omega-3's. These should keep any of us out of hot water for potentially imbalancing us more than we already are! good luck and THANKS for asking I"m on the trail of excellent health, leaving NO stone unturned. 

    • Posted


         Thank you for bringing all your research to share with us! I am off to get my vitamin D3!!

  • Posted

    Hi Matt,   

    I have info about males and LS. I would rather write to you in private.

    Any idea how to do that?

    • Posted

      You can use the "My Messages" facility on here laura to message other members personally .. only need to work out how to use it .. once you are logged in go to the top right hand corner of the screen page and click on My Messages .. I would presume to start with ....

    • Posted

      hey - I would love to chat to you about this more!

  • Posted

    Hi, I was diagnosed with BXO / LS in 2011 although the origins of my problems probably began in my childhood.

    I only realised at @ 17 YOA that I could not retract my foreskin and therefore that my penis did not look like other men's penises that were not circumcised.

    I can guide you on dealing with the tight foreskin and what is to do to alleviate your symptoms.  You are most likely to be given a steroidal cream and often it is a case of finding the one that works best for you.  Once you are prescribed stuff I can guide you on the best one to use it.

    In terms of your sex life, once you get the right treatment in place and you are using it CORRECTLY (not always straightforward) you can plan the use of the treatment so that you are not using it on the days in which you may be sexually active.

    I only began to read this LS Forum very recently and I was very alarmed by the 'shrinkage' issues women have to deal with on their genitalia.  Fortunately, from my experience, men get off relatively lightly on this front - but YOU need to learn about stretching and how to do this without creating further damage to the skin around the head of your penis (the glans itself, and the entire foreskin!).

    * What is essential is that you put in place exemplary hygiene practices for the head end of your penis!  Do not allow soap, shower gel etc. hair shampoo or anything like that to get anywhere near to the end of your penis.  If you shower, start by drawing the entire loose skin of your penis forward to protect the affected area, after you have finished cleaning yourself, ONLY THEN expose the head and foreskin of the penis and wash with warm - never HOT water.  THE ESSENTIAL is to ensure the entire skin of the penis is 100% dry, have a dedicated towel for this that no one else must be able to use. Each time you urinate, or become sexually aroused, or following masturbation and ejaculation YOU MUST ensure you wash with water only, and again 100% dry.

    Stay in touch as I have overcome ALL the difficulties entailed in male penile LS ... so, there is a great deal of hope in what you can achieve ........

    • Posted

      this is so useful. i have had it for nearly two years. i just wondered - have you been circumsized? my doctor who is the leading penis doctor in the UK who has done most of the leading Ls studies has advised circumcision reduces symptoms drastically. I feel very low today about it all. reports online are alarming. people think there are few mens with this but there isn't! men are just much less likely to talk about these issues.

    • Posted

      No, I chose not to get circumcised - I contacted a 'Non-Circ' organisation in the UK as I had severe symptoms from what I subsequently learned was LS for quite some extended period of time. The advice I got was from a retired UK GP - this led me to get checked by GP who gave me an initial steroidal treatment and was referred to Dermatology at my local hospital as my symptoms were so severe it was thought it could potentially be penile cancer, and I was at the at-risk age for this.

      I had a biopsy which proved the presence of LS - I have used Clobetasol ever since to control symptoms and I can usually only apply it 2 or 3 times weekly depending on my level of sexual activity.

      My advice would be to try to ensure you use Clobetasol (usually Dermovate) correctly for between 7 to 9 months before deciding whether to get circumcised or not.

      Worldwide published medical studies show consistently that females suffer from severe genital skin disorders much more than males do - these studies show between 70 and 90-odd Percent of all sufferers of severe genital skin disorders are female.

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