Does occlusion (covering the skin) worsen LS?

marci, sometime when you're not having problems being able to type you will have to weigh in again. I am very interested in the PRP injections, but am having a difficult time finding a doctor who administers them. I think you are saying you had lesions that wouldn't heal(?) I spoke with one doc in a neighboring state who said she gave them to people with bad cases. I was interested in getting them to improve the skin now before it does get bad.

May I ask where are you located?

Thanks

Thanks, Wee_Dugie.

I have been massaging it as you directed. You aren't concerned that underwear will rub it off? I don't know where yours is located? Under the foreskin? On the foreskin? I don't have a foreskin so the tip rubs against underwear.

I agree about the 6 patients. Bad example because it is just the latest of MANY articles and studies on the occlusion theory of LS. I just posted a Google Scholar citation list. Or go to Google Scholar and enter occlusion lichen sclerosus.

I am skeptical of studies that implicitly support circumcision as I am a victim of that practice but, nonetheless there does seem to be some evidence for the occlusion theory.

When you and others talk about rubbing it in and stretching the skin, is it mucosal skin near an orifice? My skin is red and the broken there (the slightest abrasion or movement at that juncture rips the skin no matter how gentle and careful I am). I will do what I can do, I suppose.

JJ, thank you for giving your opinion on circumcision, I recently dealt with a young man who was adamant he wanted circumcision. I try to take an unbiased view of things like that and point out the alternative perspectives that it seems that had not thought of, then leave the decision to them.

In terms of me, my LS was initially present both on the head and foreskin, following initial application of a milder steroid ointment the LS on the head of penis cleared completely and has not returned. However, it is on the foreskin where the presence has remained and this is where I need to apply Clobetasol to on a regular basis.

So no, I am not concerned about rubbing off - and yes I do appreciate that in my case, once it is applied the area I apply it to is my inner foreskin and this is usually completely covered unless I fully retract the foreskin. Whereas in your case the LS infected skin is always exposed.

I forget how long you have been applying a topical treatment? As I say, it took me quite some time to perfect how I apply the Clobetasol and the regularity I needed to achieve.

So, think of a specific time of day: if you are someone who gets up early, takes a shower then has breakfast before leaving the house most mornings, the ideal time to apply would be after a shower, then put on a loose robe, or boxers or shorts where the crotch area of the clothing is way below the crotch region of your body. It is these kinds of issues that will help: what I have found is that after working on the peripherals of IT / LAN Networking, there are often several ways or routes to achieve what is is that you need as an outcome, or, you find a 'workaround' where there seems no direct, or specified way of achieving what it is you need.

Essentially, find what works for you, but starting from perfecting your application practices is an essential base ......

So, we are talking about the infected skin, essentially. However, what you first need to achieve is a stabilised situation - I think I already stated to you that this phase may take anywhere between 3, 6 or even 7 months (or more) to achieve, particularly if you are sexually active or regularly use 'manual stimulation' of the penis.

As you comment, you need to avoid any abrasion or anything that rips the skin. Again, for males who are sexually active, and who are in the initial phase of topical steroid use, damaging the skin goes 'hand-in-hand' with being sexually active - it is the nature of what takes place, it cannot be avoided. The only safe approach is completely abstaining from sex, or otherwise, as this will place too many demands on the skin that LS infected skin can deal with. Again, we are back to initial stability achieving phase, and I would suggest this takes upwards of 3 months as a bare minimum, until stability of treatment protocol has been achieved and you can say with some level of certainly that the skin is now as healthy as it is going to be from now on.

Essentially, you may need to wait until your skin is much stronger before you do any deliberate stretching, in addition, be as careful as you can with skin movement when you apply the steroid application ....

Thank you, Wee_Dugie.

I went without sex for 8 months before the LS diagnosis. Of course, abstinence alone did nothing (the LS worsened) because I didn't have right medicine.

I was on clobetasol for 13 weeks when I saw the expert I was waiting to see. I was applying as you and others indicated, twice daily. He told me to manage expectations because where I am now may be the best it will get. And he also noted that having it at the meatus makes it much more challenging. It is difficult to say whether the clob did anything. I know most people on here say it helped them go into remission or be largely pain/symptom free although I know for many people it doesn't work.

Last month on Elidel, then tacrolimus (he switched me to tacro because it is ointment). No real change yet either. I'll keep doing all this - and adjust clothes (I have tried so many things with clothes that I saw recommended here).

There was a study of hundreds of patients at a medical center in India (published in peer reviewed urology journal). Having LS on foreskin is the best scenario because worst case they can cut away the infected skin. Otherwise, if the LS is at the meatus, it often becomes a nightmare spreading into the urethra. They literally have to tear out your urethra and replace it with skin from your mouth! I have had urethritis so that is a fear too.

PS:

Re: circumcision: I have no frenulum and was circumcised Jewish-style (very tightly). The goal of that style circumcision (adopted by many US doctors) is to get rid of all "excess" skin. As a result, I have no sensitive spot on my penis and feel almost nothing from my hand or a woman's hand. I have to fantasize and with lots of jerking get the blood flowing. Thus, the only form of sex where I feel anything is intercourse - and now that is ruined by LS. I also can't feel oral sex done on me (it is uncomfortable because the pleasurable skin is all scar tissue with more sensitivity to pain). Now I watch porn videos of women pleasing a man's frenulum or rolling the foreskin over it but it all is foreign to me. Of course, the USA is a nation in denial because so many mothers were told "it is good for hygiene" or to prevent diseases like penis cancer or LS. They have no idea what is lost. Women will say "well, you can still orgasm so why are you complaining?" But it is like very low (or no) sensation prior to orgasm and the orgasm itself is less than half the duration of an uncircumcised orgasm. (Mine last 3 seconds - 6 seconds is a long orgasm). Some men have pieces of the frenulum left after circumcision, some don't. But the doctor won't ask a woman "how much do you want to cut off?" He just does what he wants to do. They now train doctors to avoid the frenulum but are told another way is to remove any "unnecessary" skin. Then they sell the skin for stem cells that go into making beauty cream for women's faces! (I am not kidding!).

There is an excellent history of the practice written by a Jewish M.D. and historian. (He thinks we need to abandon the barbaric practice): "Marked in Your Flesh: Circumcision from Ancient Judea to Modern America"

Wow. I knew there were pro and con arguments re circumcision but never heard a story like yours by someone personally impacted in such an extreme way. Very sad and unfortunate...and now the LS. That is, to put it mildly, a lot to deal with.

How old are you and how long have you had LS? Do you talk with a therapist or belong to a men's group? I know without this site I would probably feel as though I was dealing with something that no one I'd ever heard of had. There's strength in numbers and we do help one another by sharing our trials and tribulations, remedies, successes and theories. Other than Wee Dugie I don't think there's another male on here. So I guess we'll have to take you under our wings and share any info that might apply.

B.

Hello again JJ,

just to briefly mention again, the early information I read on Men and LS was basically saying because of your circumcision, and I take it you were circumcised as an infant, that you should not get LS and this shows that information that many in the medical profession may really on is completely incorrect.

You mention ‘the expert you waited to see’ - I am not sure whether we have detailed this elsewhere in a previous post, but is the expert someone specialising in Genital Skin Disorders? Furthermore, my suggestion would be such a specialist should be a Dermatologist by medical training.

Obviously, we would all certainly hope this issue does not spread into your urethra!

On the Penis Disorders Forum on this web site from time to time there is a Urologist who was circumcised as an infant and he has suffered horrendous consequences because of issues relating to the circumcision. So much so that he was determined to become a Urologist himself and warn other of the dangerous potential consequences, and the false information that you mention that is typical in the US and no doubt, still persists today.

Here in the UK the opposite is the case with circumcision, the vast majority of UK form males remain intact throughout life. Of course there are sizeable groups from different religious and cultural backgrounds who are born in the UK who do get circumcised as infants but this is far less than a quarter of the population.

So again, thank you for detailing your perspectives on circumcision and the impact this has had on your sex life, particularly for the many USA based Ladies on this Forum for them to understand the Male point of view.

The USA is unique in that over 100 million men have this done. Not to sound anti-Semitic but when you end up with as many Jews as there are in Israel and the one thing that always marked them from persecution was circumcision + American mothers freaked about masturbation and hygiene + Jewish doctors flooded urology in the early 20th century, we had (and still have) many doctors with a vested interest. See the book I mentioned. Until very recently, there was no anesthetic used on the babies (in accordance with Jewish practice but then simply medicalized so people forget the religious roots). People convinced themself that "babies don't feel pain" but I have had women friends who didn't want their baby cut persuade their husband (who is cut) to watch the procedure on a video. it is horrifying the pain they go through (the babies). They feel 4X more sensitivity to pain than adults who have built up some tolerance for pain.

I will try to find the person you mentioned on Penis Disorders forum.

PS: Each year about 100 babies die from the traditional Jewish mohel practice of sucking the blood from the cirmcucised penis. Mostly in NYC. Most Jews abandoned this for the "medical" practice but the Orthodox have not. The mayor and public health officials encouraged Jewish parents to go to hospital but when there was criticism, those asking the city to do something faced the anti-Semitism charge and nothing happened. Both mayoral candidates said they respected this tradition - even if babies are dying. The government here won't let Jehovah's Witnesses deny blood transfusions to children but the Jewish practice is untouchable.For one of many mainstream news stories, see "Baby Dies of Herpes in Ritual Circumcision By Orthodox Jews"

I am 55. There are no such men's groups here in my rural area. Besides, men do not talk about this stuff. And finding men that also have LS is a needle in the haystack.

I believe there is an LS FB page. Wonder if they could steer you to a men's group. I'm not on the FB page so I don't know anything about it. Would your doctor possibly know of one? Is he a urologist or dermatologist?

My doctor is a dermatologist. The urologist was useless. He said it was yeast infection and, after pills and creams failed for 2 months, and the tests showed no yeast, he gave me another Rx for yeast cream and asked "do you want to see a dermatologist?" That was after he did a cytoscopy of my bladder and urethra "to rule out cancer." Charged my insurance company thousands for that procedure.

I will try to find the FB page. I don't know if I want to be seen under my real name though. Too embarrassing.

Unfortunately the experiences you had with the urologist show what many medical (so called) professionals will do: they begin with the lowest potential cause (the yeast infection) and then work towards what is actually causing the problem. The do things like cytoscopy simply to charge the funder of your treatment the largest amount. This is purely wrong, what patients have to go through, such as with conditions such as LS is that their symptoms worsen and rather than the appropriate treatment being put in place at the earliest possible moment, this can be delayed, and delayed so that the insurance company has to fund a fat overall bill.

Dear JJ, Did you know you have your messaging turned off? I'd like to send you some very hopeful info. Blessings, Nancy

I didn't know. It is now turned on. Thanks for letting me know!

Well, you'd only be known by people who also have LS. Maybe there's a male site specializing in genital issues(?) I do wonder how male and female LS can be the same problem. Even among women they can experience it differently.

Dear Dr JJ,

I, Too, understand about having your real name associated with this disease. I don't trust the drs I've seen to keep my info private. There have already been lapses and embarrassing moments. I know how you feel. This is why this forum is helpful. Don't give up yet...

Beverly, I had thought of doing a Male specific LS Forum on this web site but all the males I have contact on the Penis Disorders Forum on the men's health part of this web site did not offer any practical thoughts on how to get it up and running such the opening details at the start of the Forum for all readers to benefit from as a starting point.

The other issue that goes hand in hand with this lack of practical support was the thought that I would probably end up answering all Forum posts. Of course I would draw attention to Nancy KB's detailed posts as part of any such Forum ....

It is still off somehow, JJ sorry I don't know how that happened, I don't remember having to turn something on when I joine this group. Maybe you can send a message to the admin?

It is still off somehow, JJ sorry I don't know how that happened, I don't remember having to turn something on when I joine this group. Maybe you can send a message to the admin?

JJ, I completely agree with you on this! What you have in the USA is that professions were built on selling products and services to people whether they wanted, or needed them or not. The medical profession is no exception to this - the essential is to sell drug treatments and carry out medical procedures irrespective of whether that provides actual benefit or not.

That is not to say that there will no doubt be thousands of medical professionals across the US that have to maintain a clear conscience as the first priority and only provide necessary treatments. However, what you also have are Religious, Cultural and Ethnic beliefs driving the demand for circumcision, and no doubt, other heath related issues too.

Here in the UK in the last decade or so we have had an issue of what is termed "Female Genital Mutilation" where the clitoris is removed from Girls - this practice is common among mother's from specific African nation's and their belief is that this 'needs' to be done to girls of around the age of 4 to 10 years of age.

It rightly has been outlawed in the UK, where no medical professionals are permitted to do this or they risk being struck-off the Medical Register, and this led to some women taking their children to nations where it is still practiced. However, from time to time there are cases where mother's have been reported before they leave the UK, and other where it has been carried out and they are returning to the UK.

Seems to me, while humanity has advanced a great deal in many areas, there are still many areas of daily life that are in the relative Dark Ages - time they were confined to History, rather than the 'Here and Now' .......

I believe there are issues with this in the US as well. The need of males to control female bodies runs deep. Surely these mothers haven't come up with this hideous pseudo religious practice on their own. It has been drilled into their heads by religious elders.

Can they not be charged with child abuse in the UK? I don't know if it is in the US, but seems highly likely.

Hello Beverly, if you are talking about Female Genital Mutilation (FGM) as it is referred to now in the UK then I would not pretend to know about or understand the specific ethnic groups that this practice is particular to.

As far as I am aware, it is not linked to religion, certainly not in the way we understand religion to be - it is more to do with accepted cultural practices that these women fully believe they must strictly adhere to. Such need or requirement is passed down through female elders, although again, I would not pretend to know whether male dictates are ultimately behind such beliefs or that these were the originators for the need for the practice.

And yes, in the UK both medical professionals have been prosecuted (there have been very few cases of FGM being carried out in the UK) as have women who have been planning to take their daughters abroad to have this done and mother's when they actually have returned. This is one thing UK Customs officials are on the look out for at airports and suchlike as the practice is limited to specific African countries.

"In every society in which it is practiced, female genital mutilation is a manifestation of deeply entrenched gender inequality. Where it is widely practiced, FGM is supported by both men and women, usually without question, and anyone that does not follow the norm may face condemnation, harassment and ostracism......it is often practiced even when it is known to inflict harm upon girls because the perceived social benefits of the practice are deemed higher than its disadvantages".

from the UN Population Fund page

You can bet the top social benefit is marriageability as no man will want to marry them if they are not mutilated. An example of religious roots:

"Over 80 percent of Malaysian women claim religious obligation as the primary reason for practising FGM, along with hygiene (41 percent) and cultural practice (32 percent). The practice is widespread among Muslim women in Indonesia, and over 90 percent of Muslim adults supported it as of 2003".

Extricating cruelty from society is not easy, neither is chauvinism. Male circumcision was/ is not currently performed to rob men of sexual pleasure or orgasm although JJ's case has certainly shown us that it can do just that in rare & unfortunate cases.

As one of the causes of LS is thought to be trauma, I wonder if women who have tragically undergone FGM end up with LS.

Please excuse my bluntness....but if your in so much discomfort why do you still feel the need to orgasm? I get sex is a big issue, but when im so uncomfortable sex is the last thing on my mind.

Just interested to hear others point of view.

In further looking you have testosterone injections, maybe this is why?

Beverley, I agree completely with what you are saying. One of the International Organisations I support via my actual name on Social Media is Global Citizen, they fight for the broadest Rights of Female infants, Girls and Women, not only in the likes of the countries you mention, but also to achieve progression in countries such as the UK as well.