Male Genital (Penis) Lichen Sclerosus

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 ups...google it.  I take a Diflucan every four months as a preventative measure.

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.   

Matt, 

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.

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."

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 ). 

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 .

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 https://www.stem-cell-lift.com/lichen-sclerosus 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 http://francescocasabona.com/ 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.

Hi Matt,   

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

Any idea how to do that?

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 ........