Medicine is starting to agree with me

For many years, I have stated that BXO is caused by dampness. I started showing BXO after I began dribbling slightly after urination, and my symptoms improved under opposite conditions. While I employed a range of treatments, I also experienced a steady improvement in symptoms using nothing other than dryness.

I was browsing forums recently, and I came across a paper published in 2015, which stated that Male Genital Lichen Sclerosus (MGLSc) was most likely not autoimmune in nature, but instead, symptomatic of exposure to urine.

You may read the whole paper if you wish, but essentially the conclusion sums it up nicely:

MGLSc is an acquired, chronic, inflammatory and fibrosing cutaneous disease responsible for significant sexual and urological dysfunction as well as creating a risk of squamous carcinoma of the penis. The etiology of MGLSc is now much better understood. It is not primarily an autoimmune condition. It is likely that an interaction between the irritant effects of urine and other pathogenic factors, such as chronicity, occlusion and as yet undetermined differential epithelial susceptibility, or reaction, to injury, are necessary for the development of MGLSc. Better understanding the pathogenesis of MGLSc is important to minimize sexual morbidity, urological dysfunction, mitigate the cancer risk it generates and preserve the foreskin when possible.

This point was also raised in the paper Diagnosis and Treatment of Lichen Sclerosus, which was published in 2013. :
Chronic exposure to urine has been implicated as a causative factor for genital LS

It also mentions that the chemistry of urine of both affected and unaffected patients was examined, and no difference was noted.

So, in short, it most certainly appears that my hypothesis is correct. Urine exposure is the major contributing factor in the development of BXO. Note that both these papers recommend the use of potent topical steroids, which I tried but found were no more effective than the natural treatments I tried, most of which were hardly more effective than treatments that simply kept the area dry. 

I still wonder to this day whether many of the oils I tried were helpful, simply because they repelled urine. The only exception appears to be Manuka Honey, which is not oil based but caused a very subtle improvement each day.

I would still like to see whether I can reverse some of the scarring, and as you can see from the mere existence of this post, I am still here and definitely still visit this blog reasonably often to see if people have posted any questions or comments.

Comments

  1. Hi,

    Very nice blog and thanks for sharing all your experience. I am happy for you. I have been diagnosed with this condition few weeks ago by a Dermatologist. I think I have this condition only very small portion of foreskin and a small 3-4 mm dot on glans under the meatus. The dermatologist had referred me to a Urologist whom I am going to meet soon and also he has suggested to undergo Circumcision which I am considering as I always had tight foreskin. What I am more worried about right now is that the BXO seems to spread at the lower portion of meatus by 0.5-1 mm and not sure if it starts going inside the penis opening. I have been using Clobetasol for a week or so seeing good improvement on my foreskin but not much on my glans yet. Not sure if Circumcision could cure the infection on the glans or it will still progress and cause me more problems in future. But I am optimistic after reading your blog and will try my best to fight this disease.

    Thank you.

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  2. Hi I would just like to thank you a lot for all the work you’ve put into this blog. I am getting a lot of peeling by using TTO and have ordered some comfrey leaves and will alternate between the two. I have on question though, I have one small raised white scar on the glans caused by the un elastic skin and was wondering if you had anything similar and wether it disappeared with peeling? Thanks again for you blog because it has been the only thing filling me with hope seeing as multiple doctors I have seen have gave up and told me I will be stuck with this for live due to steroids being un effective but am getting peeling using TTO so I’m staying hopeful.

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    Replies
    1. I am also using Manuka Honey overnight and was wondering if you think it’s worth carrying on with it?

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    2. Hi there. No, I never had anything like that. Though I did have some pretty hideous red blotches on my glans, caused by the ring pressing hard against it. They have long since healed back to normal looking skin again.

      Great to hear you've been having progress using TTO. I partly wonder whether the peeling isn't the result of some irritation, but in the case of BXO, maybe that's a good thing, as it speeds up the shedding of the unsightly layers

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    3. On the Manuka Honey, of all the remedies I tried, that was easily the fastest working. I noticed a very very minute improvement in the size of the phimotic ring every morning, after covering myself in it overnight. There did become a point where I stopped noticing the improvement so much. That may have had more to do with the comparatively small size of the ring (making improvement harder to notice) than the efficacy of the Manuka Honey. I would say do what you feel is best.

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    4. Also what did/do you use to wash yourself? Because currently I’m using a tea tree bar soap which seems to help with promoting peeling but was wondering if you used anything when washing which helped?

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    5. I just use regular soap. I've never relied on soap as an active ingredient in the healing process. It's more been simply to clean the area of any urine and sweat deposits. In saying that, I'm not surprised tea tree oil based soap promotes peeling. Tea Tree Oil really is wonderful stuff.

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    6. one last thing, what would you say was the best treatment that you use for the white skin. Currently I am at the stage where the glans doesn't have thick BXO layers but has a white patch of skin running around the right side of the glans and nothing seems to make that white skin peel. All of the surrounding skin seems to peel fine but this white pigmented skin just won't seem to peel. I am considering trying DMSO but feel like that is best for when the BXO is thick. Youe opinion on this would be greatly appreciated

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    7. I feel like the skin could be thinned due to overuse of steroids in the early stages or de pigmented skin from the LS or it could be all in my head and actually be LS which is just taking ages to clear

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    8. Hello, I think you should consult a dermatologist online diagnosis can be false. The white skin might be a vitiligo patch.

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    9. I didn't just diagnose online. I saw my GP who diagnosed me as having Lichen Sclerosus, and prescribed medication accordingly.

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  3. Thanks a lot for your reply, also one last question what did/do you use to wash yourself. Currently I’m using a tea tree oil bar soap which seems to help dry the glans out and promote peeling, but was just wondering if there is anything better to use.

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  4. Also you said you would like to reverse some of the scarring, I would recommend you see a dermatologist and ask for a topical retinoid such as tretinoin. This is what I am currently using and it has seemed to help, bear in mind though only apply it once a week at night and also once you’ve applied it, it will make the bxo look worse but once you wake up it looks fine and it does seem to make the glans look better so it’s worth a try

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    Replies
    1. I haven't heard of that before. Perhaps I'll have to do some research and share my findings in a future post. Thanks for the tip.

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  5. Did you consult a urologist in regards to urine dribble? After reading this I've noticed I do this also. Wondering whether they can help prevent this from occurring so frequently after using the toliet! I find that I would have to dab a lot into the day to avoid any dribble.

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    Replies
    1. No. I wrote it off as part of aging. The trouble with specialists like urologists is that they are surgeons, and in their view, surgery is the answer to many things. In reality, you can sometimes achieve the same quality of outcome by adjusting your expectations slightly.

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    2. How then would you keep yourself 'dry' post urination?

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    3. You want to squeeze your shaft and penis glans for a while and after doing it enough till you don't see dribbles dry up your foreskin and glans with toilet paper and keeping foreskin down all times helps too.

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    4. Exactly. Also, sometimes the mere act of putting your penis back in your underwear can cause a few drops to come out, so I check if that's the case, and am always prepared to repeat the process.

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  6. Hi, I would like to update that I got circumcised in January. The sensitivity might have reduced a bit but the discoloration on glans has disappeared. I would recommend circumcision if anyone of you are considering it.

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  7. I am in general agreement with you in regards to urine being somehow connected to causing plaques and inflamation. Since for the last few months things have improved for me drastically, I'd like to share my own experience and findings if I may.

    It's been a long journey of trial and error for me. A couple of years ago things had gotten so bad I feared I'd develop penile cancer. I had badly inflamed glans, with two nasty red weals on either side of the meatus. Reflecting at that time on my diet, I was eating a lot of carbohydrates, especially cakes and other sugary foods and this is where it get interesting. Because I also had a digestive disorder, after much research I decided to adopt the ketogenic diet and severely restrict my carbohydrate consumption. After just days on this diet many notable benefits occurred, notably my digestive disorder disappeared and the inflamation of my glans gradually subsided, but didn't disappear entirely. Even though my glans were in much better shape, a few months ago the phimosis got bad and knew very quickly why. I had a habit of retracting my foreskin during the day to keep it supple and to avoid urine from contacting the foreskin. Over the period that the phimosis returned I had been getting up in the night to urinate while my foreskin was not retracted and the urine was quite dark, suggesting dehydration. This convinced me that it was the urine, or something in the urine that was exacerbating the condition and that I need to stay well hydrated to dilute any toxic elements and to prevent the urine from prolonged contact with my gentitals. At this point I did two things, I started using Emu oil as a barrier and made sure when I did urinate at night, I waited until I could retract my foreskin to do so. After doing these things the phimosis healed quickly and I very happy to say that they have stayed that way.

    I am of the opinion that the urine connection could well have something to do with oxalates. Ever since I stopped eating so many vegetables and cutting out processed and sugary foods that are known to be inflammatory, my condition improved. That's not to say that vegetables are bad for me per se, but maybe cutting them out I also cut out vegetable high in oxalates. There are some woman who have reported good results after adopting a low oxalate diet, which gives the oxalate theory some support. Just take a look at some images of calcium oxalate crystals, they are sharp and often spikey, so it makes some sense to suspect the connection. Anyway, since this condition is so worrisome for us, these things are all worthy of consideration and exploration.

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