Does BXO originate from skin damage?
This morning I was pondering the question "So where does BXO come from?". We're told it's an autoimmune disease, perhaps genetic, and basically that's it. I'm not an immunologist, nor will I ever be. But I don't understand how someone can have an autoimmune disease that stops being active just because it is kept dry. I've read it countless times - keeping the area dry seems to help. I've asked on forums who finds that dryness helps their BXO heal, and the answers are never "not me". Plenty say yes. So why is an autoimmune disease only an autoimmune disease if the area is wet? Forgive my ignorance, but that feels like a bit of a weak argument, but I'll reserve judgment. Maybe there's a rational explanation.
Another school of thought I've found in several places is that LS/BXO plaques sometimes occur around previously damaged skin. As I have pointed out earlier on, I was circumcised as an infant, and have since restored my foreskin as an adult. It was only since this happened that I developed BXO. A question I was asked not so long ago was whether the trauma of tissue expansion on the affected area may have caused BXO in my case. This is a very good question, and takes a bit to answer.
I don't believe that BXO originates as a result of tissue expansion. If it did, we would see much higher instances of it among men who have undergone nonsurgical foreskin restoration. The Internet is perhaps the largest community of men undergoing restoration, and a search for the phrase "BXO" or "Lichen Sclerosus" on foreskin restoration forums seldom yields much in the way of results.
So if not from that damage, then where did my BXO come from? I've been restored for so long now that I can't actually remember all that much about what I used to look like. One thing I do remember, however, was that I had a somewhat uneven circumcision. I had much more inner skin remaining on one side to the other. This has gradually evened out with the expansion of the shorter skin, simply because it was the tightest at the time of placing tension on it. But one thing I also remember was something where my frenulum originally was. I can remember one time, a woman noticing something there and commenting on it. She wasn't being degrading when she said it. She just asked if it was ever sore at all. I've thought about that over the last few years, while I've been dealing with BXO. The patch of skin she talked about was an area of slight dryness, where the circumcision scar is. If I look at it today, I can see there is a tiny excess of skin there, but it's not dry and tough like it used to be before I started restoring.
So here's what I think could be the cause of my BXO... When I was circumcised, either things didn't go totally smoothly, or the job was rushed or whatever, leaving me with a) an uneven amount of skin between the left and the right side and b) a slightly suboptimal fusion of skin at the frenulum. This second area may have taken some time to heal, compared to the rest of the scar, and subsequently developed BXO. However, because I was constantly exposed to the elements by virtue of the fact I had no foreskin, I saw no ill effects, other than the tiny patch that might occasionally show up as dry and tougher than the surrounding skin. Enter foreskin restoration, and gradually, more and more skin became covered. Still no major issue... at least, not yet. Then in around 2011 when I started noticing small amounts of urine after going (presumably, a normal sign of aging) I then spent more and more time with urine underneath my foreskin. That appears to be the lethal combination for all men with BXO.
The other reason why I buy into this theory is that, as we all know, some men end up getting circumcised because of BXO. Evidently, even if it has progressed onto the glans, after circumcision it will gradually go away.
There was only one recurrence after total circumcision. This patient was an obese boy with a so-called buried penis. The skin around the penis developed lichen sclerosus after circumcision, leading to recurrent phimosis.
Source http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3036008/
So it appears that BXO/LS is something that we have indefinitely, but the symptoms are only apparent in a moist environment. Therefore, it's highly conceivable that someone who is already circumcised could well have it, but simply never observe it as the disease never has a chance to progress. I now believe I was one of those people.
There is still a couple of unexplained matters. First, why was that 'dry patch' noticeable at all? Surely if it was totally exposed to the elements and dry 24/7, it shouldn't have ever been anything other than normal-looking skin. This I can't really explain. Secondly, I know for a fact I'm not the only restorer who had started with a suboptimal circumcision, with additional tissue damage. So in theory, I shouldn't be the only restorer who appears to have come forward with BXO.
But what I will say is, the small dry patch where my frenulum once was is a tangible thing that I can say I absolutely had. That area was also one of the most troublesome when I was suffering heavily from BXO, and was often an area undergoing damage after sexual activity. It also felt like the white skin was thickest there. In fact, it took me months of treating BXO before I even started photographing any other area, as I wasn't even sure how far around my BXO extended. To me, the evidence is clear that my BXO began in the remnants of my frenulum. Why it started there, who knows.
Another school of thought I've found in several places is that LS/BXO plaques sometimes occur around previously damaged skin. As I have pointed out earlier on, I was circumcised as an infant, and have since restored my foreskin as an adult. It was only since this happened that I developed BXO. A question I was asked not so long ago was whether the trauma of tissue expansion on the affected area may have caused BXO in my case. This is a very good question, and takes a bit to answer.
I don't believe that BXO originates as a result of tissue expansion. If it did, we would see much higher instances of it among men who have undergone nonsurgical foreskin restoration. The Internet is perhaps the largest community of men undergoing restoration, and a search for the phrase "BXO" or "Lichen Sclerosus" on foreskin restoration forums seldom yields much in the way of results.
So if not from that damage, then where did my BXO come from? I've been restored for so long now that I can't actually remember all that much about what I used to look like. One thing I do remember, however, was that I had a somewhat uneven circumcision. I had much more inner skin remaining on one side to the other. This has gradually evened out with the expansion of the shorter skin, simply because it was the tightest at the time of placing tension on it. But one thing I also remember was something where my frenulum originally was. I can remember one time, a woman noticing something there and commenting on it. She wasn't being degrading when she said it. She just asked if it was ever sore at all. I've thought about that over the last few years, while I've been dealing with BXO. The patch of skin she talked about was an area of slight dryness, where the circumcision scar is. If I look at it today, I can see there is a tiny excess of skin there, but it's not dry and tough like it used to be before I started restoring.
So here's what I think could be the cause of my BXO... When I was circumcised, either things didn't go totally smoothly, or the job was rushed or whatever, leaving me with a) an uneven amount of skin between the left and the right side and b) a slightly suboptimal fusion of skin at the frenulum. This second area may have taken some time to heal, compared to the rest of the scar, and subsequently developed BXO. However, because I was constantly exposed to the elements by virtue of the fact I had no foreskin, I saw no ill effects, other than the tiny patch that might occasionally show up as dry and tougher than the surrounding skin. Enter foreskin restoration, and gradually, more and more skin became covered. Still no major issue... at least, not yet. Then in around 2011 when I started noticing small amounts of urine after going (presumably, a normal sign of aging) I then spent more and more time with urine underneath my foreskin. That appears to be the lethal combination for all men with BXO.
The other reason why I buy into this theory is that, as we all know, some men end up getting circumcised because of BXO. Evidently, even if it has progressed onto the glans, after circumcision it will gradually go away.
There was only one recurrence after total circumcision. This patient was an obese boy with a so-called buried penis. The skin around the penis developed lichen sclerosus after circumcision, leading to recurrent phimosis.
Source http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3036008/
So it appears that BXO/LS is something that we have indefinitely, but the symptoms are only apparent in a moist environment. Therefore, it's highly conceivable that someone who is already circumcised could well have it, but simply never observe it as the disease never has a chance to progress. I now believe I was one of those people.
There is still a couple of unexplained matters. First, why was that 'dry patch' noticeable at all? Surely if it was totally exposed to the elements and dry 24/7, it shouldn't have ever been anything other than normal-looking skin. This I can't really explain. Secondly, I know for a fact I'm not the only restorer who had started with a suboptimal circumcision, with additional tissue damage. So in theory, I shouldn't be the only restorer who appears to have come forward with BXO.
But what I will say is, the small dry patch where my frenulum once was is a tangible thing that I can say I absolutely had. That area was also one of the most troublesome when I was suffering heavily from BXO, and was often an area undergoing damage after sexual activity. It also felt like the white skin was thickest there. In fact, it took me months of treating BXO before I even started photographing any other area, as I wasn't even sure how far around my BXO extended. To me, the evidence is clear that my BXO began in the remnants of my frenulum. Why it started there, who knows.
Interesting post, my BXO is also present at my frenulum I think, because sometimes when I get my penis dry for a longer time I see that the skin is peelin off from frenulum just like from the tighter ring around my foreskin. And after BXO reoccurs I see that skin on frenulum has similiar hard, white patches just like on my foreskin.
ReplyDeleteI think a lot of it is to do with physics. When you urinate, you probably pull your foreskin back. When done, you slide it forward again. That act moves leftover urine out of the urethra, and it dribbles down toward the frenulum. Once thing I never managed to explain (but I'm sure physics can do that too) is, why the ring of BXO? I had one as well when I first started out. I struggle to explain how that area gets wet enough to cause BXO.
DeleteYes! That's puzzling me too. When I go to sleep I ensure that penis and foreskin is dry, I'm even sleeping with foresking pulled back at night to ensure no wetness for example from sweating will occur. And when I get up I see the built up bxo tissue on ring. It's always the same after the night. So something is happening during night that keeps BXO coming back. But it's not wettness. I think that this might prove that BXO is autoimmune. Why? Because at night our immune system is most active and maybe due to this bxo skin shows up faster than during a day. Also I would like to say something about theory you mentioned that BXO might be caused to the damage to the skin. I'm myself using stretching techniques to fight phimosis I had whole of my life. I managed to treat it almost completely but this BXO ring is the last obstacle i'm struggling with. I've noticed that after intense sessions of stretching BXO keeps getting worse especially when I stretch foreskin few times a day, then go to sleep and at morning BXO skin is built up like twice more than normal. This might be to the skin damage caused by stretching. So this theory might have some truth in it.
DeleteI'm now thinking to apply some additional treatment to my BXO besides keeping penis dry and clean.
I'm surprised you're noticing an apparent difference in the amount of BXO skin overnight. I always felt the fastest acting treatment was Manuka Honey, as it 'felt' like it was visually shrinking the ring overnight. Each morning, I would notice it had become ever so slightly smaller. Have you tried Manuka Honey? It's rather messy, but it also seemed to do more good stuff for the ring than any other treatment I ever used, particularly at night.
DeleteI didn't try manuka honey. I'm thinking about tea tree oil. Do you apply it directly or dilute it with water or other oils? I heard it's very strong.
DeleteTea Tree Oil is very strong. I couldn't tolerate it well undiluted. It burned quite heavily. If I were going to try it again, I would dilute it in a carrier oil of some variety.
DeleteThere is another blog from a long time back that was run by a guy who had a similar case of BXO to you, and cured it using nothing but Manuka Honey. There seems to be a perception that, because they come from the same plant, they work the same. They don't. Manuka is healing, while TTO is attacking, in my experience.
Thanks I will try manuka honey then. How strong in terms of MDO it should be? This honey is pretty expensive here in europe especially the strongest one.
DeleteSorry I meant MGO.
DeleteThanks I will try manuka honey then. How strong in terms of MDO it should be? This honey is pretty expensive here in europe especially the strongest one.
DeleteOver here, we measure Manuka honey's strength by referring to the UMF level. I know many swear that UMF 18+ is necessary when treating BXO. I personally just bought the only one I could find at the supermarket, which was UMF 5. That cost about $15, so was still quite pricey (the very very cheapest loaf of bread here costs about $1, to put it into perspective).
DeleteHi,
ReplyDeleteI am posting here because it is your most recent post, my comments aren't directly related to it.
I am a 33 year old male from Sydney. I was never circumcised. About three years ago after a period of extraordinary stress I noticed some white patches on funnily enough just under the right side of the glans. These never really became much in themselves but a whitish ring had begun to form on the foreskin on the left side.
The diagnoses scared me. Terrified me. It still does. I am relatively young to have this condition and it scares the crap out of me that this could interfere with my possible love life.
Anyway my dermatologist gave me a topical steroid which I used. I also sought a second opinion on whether circumcision was a better option (I just wanted this gone!). This second guy had a great personality and put my mind at ease. I know I am lucky that my lichen never progressed far at all and he pointed that out and said circumcision was a last resort.
So I used the steroid I also did my own research (like we all have) on any herbal remedy or cures. Nothing gave me much hope. I did however use two things both meant to promote the immune systems T cells to kill off cells properly. These were black seed oil and mangostein. Both were being researched for cancer and autoimmune diseases. Who knows if these helped.
But I returned to the dermatologists twice and both times he was very happy. The hardened skin had become simply whitened skin and on the second visit we ceased the steroid and I was told I didn't need to come back unless the condition changed.
So to give you an overview of where I ended up. First of all I never had any itching - which many people seem to have as their main symptom. Not one bit. My condition looks pretty close to your recent pics where you are almost cured. I have a whitish ring on the foreskin more visible on the left half. The right side of my glans to the front also looks whitish. That's it. To be honest a lot of the time these are barely visible. However, things like temperature, moisture, blood flow etc seem to vary that a fair bit. Recently one day the whiteness stood out to me more and I went back to the dermatologist. After a thorough examination he said it is still 100% dormant and that the changes would be only in appearance due to those things mentioned above. His view has always been that these cells have lost pigmentation and that will never come back. Which I was cool with if I had a functional penis.
But since that day when I thought it looked whiter my paranoia has returned. This condition hangs over my head. So I thought if I could minimize the signs of it maybe I would feel better. So I began looking for ways to repigment skin. Ginger is what I came up with from one blog. It is apparently a very slow process. I have been doing it a few weeks and to be honest I have no clue if there is an improvement.
The other thing is this skin is also thickened a little under the surface so I have no idea if there's more than pigmentation - if it is actually scar tissue who knows if ginger will work even if it isn't one of the million home remedies that doesn't work.
So I am asking your opinion on what you think? Manuka honey, dryness etc do not cause me to peel. This skin seems to have not changed in 2.5 years and any thickness to it seems 'inside.' It would almost lend me to think I don't have lichen at the moment, just it's markings. If that's so fading them would help me feel normal and not worry.
I hate this. Checking my penis multiple times a day to see if anything has changed. Wondering if I should give up any idea of a relationship incase one day it progresses. It is ruining my life...which I know is stupid Coz so far in 3 years it hasn't hurt or stopped me functioning in any way. But it's the idea what if...
Hi, and thanks for your post. First of all, sorry you're suffering from this and experiencing so much mental trauma as a result. That in itself may have to be another topic for me to address in a separate post, as it's an area I definitely an passionate about.
DeleteIn terms of your situation, I have to confess I myself sometimes wonder if my BXO is actually improving at all, or just fluctuating due to the variables you mentioned. Then I post pics on here, for those who only see me a couple of times a year, and they say I look almost healed. Remember, when you look at yourself all the time, with something as slow-moving as BXO is, you'll probably never see any change, even though it's happening.
2.5 years is a long time, but in saying that, I'm about 1.5 years through mine and far from where I expect to be when I consider myself 'healed'.
The part that sits as a total buster of the 'skin cells have lost their pigmentation' theory to me is, why was my skin (that was once uniformly white) now fully back to normal in patches where there were wounds, but not immediately adjacent to them? Something about the healing process of recovering from a wound seems to be able to bring the tissue right back to normal again, and yet, the tissue right next to it that was never injured is still more pale. I know they use dermarollers to heal up some scarring, so perhaps that process activates something we can't get from topicals alone, but the point it shows is that the skin can heal all the way back. Maybe it's my stubbornness, maybe it's false optimism. But I am adamant that there is something out there than can help speed up this process on the slower skin.
Have you tried any product with Comfrey in it? That seems to be the best thing I can find for darkening up my skin at the moment. It works very slowly, as does everything, but at least it seems to work. Comfrey's a bit of a funny plant though, since there seems to be a perception in some circles that it's toxic.
I don't know much about Ginger for repigmenting skin. I do know that many other products that reportedly help 'skincare' have no effect on BXO. What I've often said to myself is "that's because BXO's awful white patches aren't normal skin". Maybe the same applies to Ginger?
The thing to remember is, not much is known about BXO. 'Silly' theories, like some of mine, can't be discounted because medicine still has a lot to explain. That's why I set this blog up. Because I couldn't find a comprehensive discussion for men. I'm not saying ignore your dermatologist, because by the sounds, they are very happy with you (and the guy rightly suggesting circumcision as a last resort - yay). But I also wouldn't take their word as final, or as any implication you have no hope of progressing further. You absolutely do.
Thanks a lot for your reply.
ReplyDeleteYes, the mental trauma has been massive. I'm sure it has been for all of us. What is shocking, especially just having graduated a psychology degree, is at no point has anyone suggested counselling for me - not the gp, dermatologists no one. Seriously?
I am lucky to know enough of that field and seek help if I feel it's needed. But many might not be.
Haha isn't that wound healing theory tempting...I could cut the white out! Lol but of course cutting that area at all could have unknown impacts. I also believe there's a way. They can replace a heart! We are talking about skin here...we just don't know the way.
The thing with ginger is it is meant to take up to 6 months. Which is slow as you said. I actually do feel it has improved a bit. But hard to tell if I am imaging it. Btw your condition has totally transformed and gives me some hope!
I have since reading your blog found a topical comfrey cream. Comfrey is illegal here except as a topical applicant. Which is fine by me. I feel applying it to the skin is best. I have not really used it a lot yet.
I have a whole range of home remedies ATM lol. Ginger is the main, I tried some Manuka, bio oil even. But I am not thinking that Manuka probably isn't so needed since my only issue is the whiteness right now. I will continue with comfrey and ginger.
What fascinated me about the ginger theory (which well may be silly) is that it apparently gets the neighbouring cells to teach the damaged cells how to function again. Wouldn't that be awesome? Although I'll admit it sounds far fetched. But hopefully one day one of us stumbles on something then one person says it worked for me too, then 10, then 100. Then people will have some hope.
bye the bio oil I mentioned earlier seemed to make it slightly worse. I have only used it a couple of times. Hard to tell though if that's a temporary effect and it would eventually get better. It is however very oily and prob isn't great since we want to keep the area dry.
So one question, how do I reconcile the comfrey cream with keeping the area dry?
There are two different schools of thought on keeping the area dry. One is that it's the oxygen that helps kill the disease, and anything that smothers it will hinder this. The other (which is the theory I subscribe to) is that the only compound that it's really important to keep the area clear of is urine, and perhaps sweat. I've always felt that, in some ways, barrier creams are actually a good thing as they would naturally keep the urine off the affected skin anyway. When I was able to tolerate creme complete, and also when I used Manuka Honey, I would keep my skin covered in either of them all day/night. The foreskin would stop it from rubbing off onto my underwear. My healing continued on both treatments. I've also found that letting the area get wet with water seems to encourage peeling also. In my opinion, there's something particularly harmful about urine on BXO skin. I can't explain how the urethra doesn't seem at all bothered by it, however.
DeleteThank you for this post. It is interesting that you were circumcised as a baby and developed LS only after the restoration process started. Whatever triggered it or awakened it into being, keep doing what you're doing, because there has been much healing and progress obvious from your pics.
ReplyDeleteIt seems like the frenulum and/or the foreskin are where most cases of male LS begin from. I remember reading about a young guy who was fine up until he cut his frenulum during sex...and that is where his bxo started spreading from. For young boys, it seems the foreskin tip is the place where it starts. For some women, it starts after childbirth...and others after menopause. Young girls who get LS...might be from urine irritating their skin. And then the inflammation makes them sensitive to a lot of other things as well, like tight clothing and soap.
ReplyDeleteAll those cases can be traced back to wounding, in some form or another can't they? The frenulum can be a troublesome area for tearing, childbirth invariably can cause some tearing, and in the case of BXO starting in the white ring, perhaps those are cases that begin as phimosis. The tightness could cause some tearing, which is perhaps enough to trigger the disease.
DeleteAll I can say is, I'm extremely grateful I'm not a woman suffering from LS. At least we have the ability to keep ourselves dry to help it heal. Incidentally, given that it's almost certain that dampness from bodily fluids helps the disease progress, I wonder if that is the reason medicine notes a much higher incidence of LS in women than in men?
Yes, there does seem to be more women than men with LS. I also wonder about the impact of hormones...and undiagnosed or misdiagnosed male cases. Wonder how many penile LS cases are never discovered because of the circumcisions that are performed and the foreskins aren't routinely biopsied. Candida might play a role? Not sure...but the Naturopath we are seeing for my son believes LS and all related skin diseases like psoriasis are auto immune diseases...and ALL auto immune diseases begin with "leaky gut"...meaning the permeability of the intestines cause particles to seep through which in turn causes inflammation which attacks various sites, including skin. There are some women who say they have cured themselves by change in diet alone. Specifically eating organic, no dairy, wheat, or sugar. I know for a fact that cutting out gluten has decreased my sons migraines...so we will continue gluten free. We haven't been able to reduce sugar yet...
DeleteI do wish this disease got more research attention. What you say does make sense, and I too have read a lot of reports from people who believe diet played a critical role in their overcoming BXO. I have recently been diagnosed with Ulcerative Colitis, which also reportedly follows leaky gut syndrome in some cases. I personally never found a diet change had any effect on my BXO. I did, however, discover a direct correlation between my acne rosacea severity, and how much dairy I have consumed. I don't eat any now, and I never have rosacea.
DeleteAnother theory I've seen banded around is that LS is fungal. I don't know about that, as if it were the case, antifungals (the '-azole' medicines would take care of it, but they don't.
Leaky gut is a pretty well known scam and doesn't hold up to research.
ReplyDeleteThe "leaky gut" hypothesis is vague and largely unproven, and the scientific community continues to debate whether "leaky gut syndrome" exists at all. There is no credible evidence that any chronic diseases are caused by a "leaky" gut, nor that any remedies marketed for its treatment bring the benefits they claim.
ReplyDeleteFrom wiki. But there's literally overwhelming evidence it's a scam. It's great for naturopaths to con in anxious vulnerable people for ongoing treatment that does nothing but send the client broke. I am pretty hostile toward it I've seen people scammed by it.
Why you say to keep the area dry? I mean this condition already cause critical skin dryness. Why using moisturizers should be bad? I'd like to know that
ReplyDeleteBecause the BXO-affected skin isn't 'dry skin', it's 'different skin tissue'. It looks dry, because it is white and something we associate with being dry. Dry skin is also inelastic, but very thin. BXO skin is as thick as you let it get. When it gets thick enough, it restricts movement in a way that normal but otherwise dry skin doesn't.
DeleteAlso, if you have a read through my most recent post, you'll note there's been research done suggesting urine damage is the likely cause of BXO, which explains my dryness hypothesis.