Does this look like LS?
Posted , 9 users are following.
Posted , 9 users are following.
We want the community to be a useful resource for our users but it is important to remember that the community are not moderated or reviewed by doctors and so you should not rely on opinions or advice given by other users in respect of any healthcare matters. Always speak to your doctor before acting and in cases of emergency seek appropriate medical assistance immediately. Use of the community is subject to our Terms of Use and Privacy Policy and steps will be taken to remove posts identified as being in breach of those terms.
Wee_Dugie jj2013B
Posted
JJ, if a Biopsy is positive for one of the Lichen based disorders then there is not much else you can add to that. What it looks like to me is that you currently have the skin discolouration on the lower levels of your skin.
I have been treating my Biopsy confirmed LS for 8 years now - I am pretty sure I have had similar symptoms to this prior to treating my condition.
Have you been given any form of treatment and if so what is it?
jj2013B Wee_Dugie
Posted
Thanks, Wee_Dugie. In my case, since the DD was LP and LS, I would love to know which it is! (I think LS is potentially more aggressive?).
Since biopsy, I have been on clobetasol propionate cream 2X daily. I am hoping it helps to attack this early although I know I will have it for life. I had also started Elidel 2 weeks prior to biopsy and it seemed to help but switched to clob once the biopsy said LS or LP.
My biggest question for you and others: During that first 12 weeks of clob, what progress (if any) did you experience? I have been through 4 weeks and it feels better (I think) but still looks bad. Intercourse no longer hurts while I do it but the lesion by the meatus will swell and get very angry afterward!
PS:
The RED rash and erosion on either side of the meatus is tender and my primary problem. Did you have a red tender rash along with white skin?
jj2013B Wee_Dugie
Posted
The extreme rareness of LS in men is difficult to shake. It is even rare among circumcised men (like me) because there is no mucosal tissue on circumcised men except at the meatus (where I have LS). I have read statistics like this one (pic attached). 1 out of 1,000 for both sexes but much more common in women so . .. about 1 out of 5,000 to 1 out of 10,000 for men.
Do you ever thing "why me?"
jj2013B
Posted
Wee_Dugie jj2013B
Posted
I suppose it is possible for you to have both - or was the biopsy unable to distinguish?! My hunch is also that LS is more aggressive than LP, as for one thing, I think LP is more localised where is some men can get LS in different locations on the body, rather than around the tip of the penis only (but, I may be wrong!).
In terms of the Elidel - and this is where I dramatically vary from many ladies on here who use all kinds of things including olive oil - my guide is to use the minimum possible of different things applied to the infected skin. So it is the Clobetasol essentially is all I use. I had recently tried mixes of Aloe Vera Gel with Turmeric Essential Oil, and also Coconut Oil for sexual purposes with mixed, inconsistent results - so I have gone back to the Clobetasol only for the time being.
In terms of your biggest question - what results did I achieve in the first 12 weeks - Dramatic! My situation was complicated by the fact that I tried to deal with skin that would not heal for many months. When I went to the doctors, eventually, there was so much scar tissue that he suspected penile cancer and he gave me a mild steroid cream until I was seen by a Dermatologist. This was within the target period of 28 days, or however many it was - but when I saw the dermatologist most of the scar tissue had cleared. I think it was my 2nd visit when they did I biopsy, when I returned for the results they confirmed LS and gave me Clobetasol which I have been using ever since.
So essentially, certainly from the time of the initial cream I was given by the doctor, then the Clobetasol my penile skin looked a whole lot healthier within 3 months total. The main issue was that my penis had been unhealthy for so long it shrank to the size to the proverbial ‘wiener’ - the size it was when I was about 6 or 8 years of age!
In terms of the red rash, I had a number of things going on at the same time: my foreskin was like a battle ground, painful angry scar tissue that would not heal, but I had different things going on on the head of my penis. This is where the term L-i-c-h-e-n came in for me, it looked exactly like lichen you would see on the boarders of sea water, ships and boats etc. It did not look the same as yours, but looked like tiny pin-pricks on the surface levels of the penile head, then you could see it broaden out through the lower levels of skin. There could have been scar tissue on the head of the penis too but this was nothing like my foreskin in terms of quantity and seriousness.
When you then say in your follow-up post about the rareness in men: from what I gather for every male infected there are around 3 to 6 female infections.
In terms of you pondering “why me” - my understanding of both my own and others with severe genital skin conditions has changed considerably. I have been communicating on here with both Male and Female sufferers - most of the correspondence I deal with is on the “Penis Disorders” section of this web site - and of course, many of the issues on there have different causes, and vary in nature from being relatively brief, due to sexual contact (STD / STI issues) to others who have inadvertently caused injury to their penis that is causing them great distress.
So, I now understand fully where the roots of my LS began, and this began in my late Teens, but the LS, while it may have been present for decades, did not cause real problems until I was in my early 50’s.
Long-story short about the remainder of what I now understand, and again this has developed with other men raising all kinds of skin issues caused by a variety of different things who I have corresponded with on the “Penis Disorders” Forum. Essentially, in terms of LS to exist there must be a range of what I call ‘conditions necessary’ one of these is trauma to the skin, but added to these are relatively simply things such a lack of the correct level of penile hygiene.
Many months ago a Male on here posted about the role of Urine in the establishing of his LS, and several female respondents agreed about this being a factor for their own. I thought this cannot be, even to the point where I thought the male poster’ was delusional and this cannot be - of course I re-thought this and agreed, I remember from my early twenties that I always washed my penis after urinating, but, for example, that I did not completely dry myself afterwards
So, there is a whole lot going on, not as simple and straightforward as you might think. And! - LS is of course an Autoimmune disorder - you may ask, “how do we get a disorder such as LS?” and one of the major factors in this is diet and a lack of the essential nutritional mineral supplements and vitamins, as well as foods such as refined sugar and alcohol that are little more than poisons to us, given the other wrong nutritional circumstances.
If you want any further information, or want to check anything else out simply hit the Reply Button - please do NOT PM / Message me as I prefer to keep the information exchange so that other readers can potentially benefit from what both of us say, in the future . ………
PS: I have heard from 1 other man who was circumcised before he got LS, and 1 other who got circumcised to deal with his LS, but the condition persisted - I did not know about mucosal tissue issue that you have raised, so that is interesting and informative.
I recently read a medical website that gave a simple explanation of LS and where it affects, it described it in this manner: 'non hair bearing skin tissues' so if you think about it, for females this is the Labia, Clitoral Hood and immediately around the Anus, for males, the Foreskin and Head (Glans) of the penis. Of course some women get LS on the Breasts and the (under?) arms, and again I am presuming this is in areas where no hair grows.
jj2013B Wee_Dugie
Posted
I have read several studies that indicate urine relationship. It is not ironclad and I'm not sure it can be. It is one reason why the rate is dramatically lower for circumcised men (because we don't have all the skin you have to trap or adere to urine droplets.
Women do get it extragenitally but the rate is only 2.5%. They understand less why that 2.5% gets it away from mucosa. Researchers don't know why it is so extremely rare (LS) in mouth: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3157816/
LP, of course, targets the genital and oral mucosa.
Wee_Dugie jj2013B
Posted
Thanks for this detail ..... !
rupert23703 Wee_Dugie
Posted
Dear Wee_Dugie,
Thank you so much for all of your posts. My doctor (dermatologist) said that I may have LS. He said he wants to rule it out. I had an adhesion and he thought it was driven by a bad yeast infection...
I've noticed in the last few months that my penis seems smaller... Does BXO/LS work that fast? My foreskin looks very similar to another post here in which you suspected LS. My inner foreskin has been red, sticky, and wrinkly for decades. I just developed an adhesion roughly two months ago.
MBetter jj2013B
Posted
JJ i responded to one of your other posts, i completely agree with wee, my LS/LP was triggered by aggrevation nd irritstion of chemicals, check out this forum, people been treating LS/BXO, with tea tree pik and dmso, effectevily burning the infected skin off, ive done this for 2 years straight and do not have any scaring ( check my other response for process) due to this treatment. although i do not believe i removed all the infected skin yet, does your skin itch at all? before you started treatments? or was it just swollen and irritated? also close up what does your whit skin look like, does it have white streaks within it?
Moderator comment: I have removed the link(s) directing to site(s) unsuitable for inclusion in the forums. If users want this information please use the Private Message service to request the details.
a30971 jj2013B
Posted
any idea what it is?