An update on this blog
I wanted to give you all an update on the future of this blog. As you know, I set it up primarily as a diary of my own recovery journey. I did so in the hope that others might benefit from my experience, and wanted to create a resource that I myself wish had been around when I was at my lowest due to BXO. Those days are mostly behind me, and although I'm still far from the stage I'd like to be at, I'm much much less concerned about my BXO than I was when I set this blog up.
So, you would tend to think that my motivation for posting here would be waning. But it's not, and here's why:
This week, we reached 10,000 all-time views
We are approaching 1000 views per month
We have a total of 79 comments (including my own)
Now, some of those views will have come from search engines, but as anyone hoping to launch a new blog or website knows, getting hit by search engines is a sure sign you are doing something right, because it means you will show up in response to people's queries. This is reflected in the fact that most of my referrals are people who have come here from Google.
For me, this is really humbling, as it shows I am most likely having a positive impact on some BXO sufferers out there. Getting comments and questions always makes my day, as it reinforces the fact that I am having an impact on real people with real feelings.
Those of you without adblock installed will have noticed this blog is now ad enabled. There's a reason why. This blog has never been about the money. I think I've proven that in how long the blog has been around and updated without me receiving a cent in return for my time and effort. But I have recently decided I'd like to take blogging more seriously, both this blog and others, and start putting some serious effort into creating resources as a business in its own right. With any medical topic, I have to be careful what I say and do, as too much interaction could be seen as practising medicine without a licence. The beauty of using advertisements is that, not only does it cost the reader nothing, it also means I am never seen as charging for what I do. The model is very different.
I could continue blogging the way I have been doing up until now - very much from a personal experience point of view, and as such, giving information that is subsequently limited in its validity for others from differing circumstances. Or, I could take the blog in more of a 'collaborating the research and posts of others' point of view, in attempt to compile much of what is known about LS/BXO and available on the Internet, and put it into one place. The catch is, that would take considerable time, and would take the blog well beyond the 'hobby' state it is currently in for me. When you have a full time job and two children, you can't do that without some payback, hence the ads.
The change of direction for the blog may never happen. To generate income with advertisements, you need a high enough volume of visitors and clicks. BXO isn't an especially common disease, so my audience will always be limited in size. But I have enabled adsense as an experiment to see how much potential is there. If the numbers show potential and an increase, I won't hesitate to shift the direction of the blog to the research collaboration angle.
I don't want to do a poll asking who supports this idea, as it's very easy to vote for something that looks nice on paper. The vote I have given out to the community is to enable ads, and look for potential that way.
I hope you understand, and support the potential developments I just discussed.
So, you would tend to think that my motivation for posting here would be waning. But it's not, and here's why:
This week, we reached 10,000 all-time views
We are approaching 1000 views per month
We have a total of 79 comments (including my own)
Now, some of those views will have come from search engines, but as anyone hoping to launch a new blog or website knows, getting hit by search engines is a sure sign you are doing something right, because it means you will show up in response to people's queries. This is reflected in the fact that most of my referrals are people who have come here from Google.
For me, this is really humbling, as it shows I am most likely having a positive impact on some BXO sufferers out there. Getting comments and questions always makes my day, as it reinforces the fact that I am having an impact on real people with real feelings.
Those of you without adblock installed will have noticed this blog is now ad enabled. There's a reason why. This blog has never been about the money. I think I've proven that in how long the blog has been around and updated without me receiving a cent in return for my time and effort. But I have recently decided I'd like to take blogging more seriously, both this blog and others, and start putting some serious effort into creating resources as a business in its own right. With any medical topic, I have to be careful what I say and do, as too much interaction could be seen as practising medicine without a licence. The beauty of using advertisements is that, not only does it cost the reader nothing, it also means I am never seen as charging for what I do. The model is very different.
I could continue blogging the way I have been doing up until now - very much from a personal experience point of view, and as such, giving information that is subsequently limited in its validity for others from differing circumstances. Or, I could take the blog in more of a 'collaborating the research and posts of others' point of view, in attempt to compile much of what is known about LS/BXO and available on the Internet, and put it into one place. The catch is, that would take considerable time, and would take the blog well beyond the 'hobby' state it is currently in for me. When you have a full time job and two children, you can't do that without some payback, hence the ads.
The change of direction for the blog may never happen. To generate income with advertisements, you need a high enough volume of visitors and clicks. BXO isn't an especially common disease, so my audience will always be limited in size. But I have enabled adsense as an experiment to see how much potential is there. If the numbers show potential and an increase, I won't hesitate to shift the direction of the blog to the research collaboration angle.
I don't want to do a poll asking who supports this idea, as it's very easy to vote for something that looks nice on paper. The vote I have given out to the community is to enable ads, and look for potential that way.
I hope you understand, and support the potential developments I just discussed.
Good luck.
ReplyDeleteMaybe it will end up forming a community and get some consensus happening of what works and what doesn't.
I would still appreciate being able to ask you questions due to your progress if you would be kind enough to answer.
Should I post on here? Or can I email you?
One thing is I don't think I've found anything to improve at all. As I have stated before it isn't particularly bad or progressing. But I also haven't managed to get skin to peek. To definitively reduce whiteness. Perhaps if I could my anxiety would lower knowing I a least have SOMETHING in the case it does begin to progress.
Another question to anyone here. Have people managed to continue a healthy Sex life with bxo? You made a good point on the other post that we don't have to have sex until ready. But the thing is like most of us I'm sure I WANT to, all the time. Lol I'm a guy. Hearing that people are able to at least have a sex life with this condition would be reassuring.
So many things about this condition don't make sense...
Really hope we have some better treatments soon.
Nothing is going to change in terms of what this blog is already used for. I'll still be here, and still post updates on my own progress. I'll also still happily respond to comments on here. The additional content I mentioned will be 'as well as' rather than 'instead of' the current content.
DeleteI've re-read your earlier comments, and one thing I haven't seen is, what natural treatments have you tried, and for how long? You mentioned the dermatologist and steroid cream (which for me did nothing other than reduce the areas that were red due to inflammation). What else have you tried?
I have just diagnosed myself with this condition. It has been there for around 5 years I think, slowly but constantly progressing. First I chose to ignore it because it did not cause much trouble but now I finally started google-ing wtf is wrong with me and why do I have this white skin and tight ring around my penis. BXO it is. Thank god it has not gone so far that I can not have sex at all... it is possible to have almost normal sex life with this condition. I am having great sex with my partner once or twice a week, it hurts a bit after sex and sometimes I get small cuts because the skin is so tight and breaks. This is what lead me here... I finally started my research because I was at that point when I realised that if I keep ignoring it, there will soon be no sex at all because it is getting too painful. This blog motivated me to start the long and depressing process of experimenting. Today is day 2. So I am just starting. I am using a creme called Fucicort twice a day - it is antibiotics creme to beat the inflammation first. I have kept the skin back and everything dry during last 48 hours and I can already feel it not being as painful and tight as it was before. Also the skin is not as red and sensitive as it was two days ago - at least the Fucicort is working and I am beating the inflammation. Also it makes my skin more elastic and if I continue this routine I think I can have sex without skin tears in couple of weeks time. Then comes the hard part. How to make the white skin disappear... First I am going to try just to keep it dry ALL THE TIME. If anyone around here is interested I can give feedback in two weeks. If there is no progress at all I am going to try Manuka honey because it is forbidden to use Fucicort for more than 2 weeks and I want to keep the skin elastic. PS! Sorry for my english - It is not my native language.
DeleteWelcome to the site! It's great you've figured out what this is before it has too much of an impact on your life. The post-sex injuries are definitely something I can relate to.
DeleteFucicort is fusidic acid, which is something I was prescribed after suffering an infection caused by a tear due to the tight skin. If by inflammation you mean skin that is red and swollen, then yes, Fucicort will help (although you may need oral antibiotics if the infection is too progressed). If, however, you mean 'inflammation' (in the BXO sense) then fucicort probably won't do much more than keeping the area dry will.
My advice would be to use Fucicort to treat the red inflammation, then after no more than two weeks, resort to purely natural methods. Dryness is, the number one, if not the only treatment that does anything for BXO in my experience.
Another general question..does everyone else find the appearance of their penis/ bxo changes? I can look 10 times a day and see ten different things. This makes me paranoid...need to normalize this.
ReplyDeleteI missed this post until just now. Yes, mine used to change appearance a lot. There's two things that affect it - moisture (things like sweat and even water after a long bath) will accentuate the white and make it look whiter, and any change to circulation (either more or less) will make the healthy tissue change from pale to very red. This creates the illusion that the white skin is changing, as the 'control' has changed.
DeleteThis is one reason why I found photographing myself to track progress was difficult - along with the fact that reflected light looks like BXO skin in a photograph, making it even more difficult to measure.
Thank you for trying to help others. Your blog is very optimistic and insightful and informative. We really appreciate it, because there is so little out there on penile LS.
ReplyDeleteThank you for trying to help others. Your blog is very optimistic and insightful and informative. We really appreciate it, because there is so little out there on penile LS.
ReplyDeleteI have tried manuka, ginger (to reduce scarring), recently comfrey. Unlike many people online the steroid seemed to work well and has been the only thing to have worked at all.
ReplyDeleteAs I said on another post I also used mangostein and black seed oil internally. I feel it helped but have no evidence.
Airing it seems to help.. The skin looks very nice and not irritated if if is aired. But aside from that...nothing natural has impacted.
I even stopped to comfrey for a few days as it seems to be irritating the non-ls skin. Although I will reinstate it to make sure it wasn't just a coincidence.
Id really like to reduce my white skin...even though it doesn't bother me physically.
What about simply keeping the area dry? I don't just mean the odd pat down with toilet paper once a day if you remember, I mean every single time you use the bathroom, and not leaving until you are certain the affected area is dry? Even keeping the skin pulled back when you can.
DeleteI have been doing that recently (1 month). I feel it helps. But it still doesn't reverse the whiteness or cause peeling. Perhaps my whiteness is just depigmentation?
ReplyDeleteGive it time. One month is absolutely nothing, in the scheme of this disease. You won't see the whiteness reverse in front of your eyes. Even if you do manage to see peeling, underneath the peeled skin you'll see more white skin. The process of skin returning to its normal colour from white takes many months.
DeleteI understand what you are saying but that's so frustrating! How do I even have a clue if what I am doing is working at all?? I'd have to try something for months and months for it to maybe do nothing. :/
ReplyDeleteRemember my phrase from way back: Peeling equals progress.
DeleteIf you've got any talcum powder handy, what you can do is spread some over the white skin when it's dry, as this will make it easier to see the edges of peeling skin. If you see peeling, you'll know that the white skin is at least responding to the dryness in a positive way. At least then you'll know that your progress is happening.
Believe me, I know what you mean. I spent months not actually sure whether my condition was improving, or whether I just wanted it so desperately to be the case but it wasn't changing at all. I think my photos today show the real answer to that.
So just a couple of things.
ReplyDeleteFirst of all I stopped comfrey as I thought it was irritating my skin and used black seed oil for a week or so.
No I restarted comfrey. It definitely makes my condition WORSE. But is this a good thing? I think I read the skin turns whiter before peeling. It does look whiter at times but as I have said this changes so much it's hard to tell. But I have some of the scaley type of skin reappearing it seems when I use comfrey. I am thinking maybe I need to persist and see if it peels?
Also, on a side note. I have a natural foreskin. It is so HARD to make sure it is completely dry! I can squeeze, shake, pat with toilet paper ten times and still there might be some slight moisture. Granted this is probably a million times better than it was in the past where I barely noticed - is there some trick to this? I do get it 99% dry but it's kinda time consuming and not perfect.
It took me a while to stop getting freaked out every time I saw skin get whiter, as for a while I thought it meant I was getting worse. Eventually I realised that white skin means a peel is on the way. I suspect the increased whiteness is due to the skin dying off, but not yet separating (peeling). You're right that it does change a lot. I think most of these changes (that you notice as the day goes on) are superficial changes and don't suggest the condition is deteriorating in any way.
DeleteAs far as dryness goes, what you're doing sounds fine. Mine is a bit the same, in that it is quite tricky to get bone dry. But whatever you do will be a marked improvement on doing nothing.
Hi. Yes I have gotten used to the changes and what is normal.
ReplyDeleteWell, guess what. I put comfrey for probably about 4 days. Then stopped. What happened is the skin became very shiny, wrinkled very easily with fine wrinkles and the unaffected skin became reddish. So I stopped for a few days and I HAVE PEELING! :) quite a bit I think. So I am giving it time to peel.
Another thing that seems promising is although the whole glans and foreskin got red/ shiny I only seem to be peeling in the LS affected areas while the other skin is just going back to normal.
A part of me would love to keep slapping comfrey on but I fee maybe the skin wouldn't handle that. I'll let I peel then go again. Also, does the redness/ shiny wrinkly skin sound familiar at all?
I will be interested to see if I can see a difference in whiteness after a peel. The white ring (foreskin) I can not see any peeling but it would be hard to see here so may well be happening.
Also I am convinced now (despite early views) that urine plays a role. Id never have thought that white ring would contact urine. But now allying creams to that ring and seeing where it ends up when I roll the foreskin forward again it is exactly where it would meet urine.
That sounds very promising. I wouldn't consider it anything of a failure that you've stopped treatment after 4 days. For a while I've had a feeling that what is often needed with LS is to treat it in bursts, then allow time for the skin to react accordingly. Skin has a healing cycle that you can't accelerate, and sometimes all that's needed is to 'shock' the skin into doing something different, then riding it out and watching as the body starts to heal. I'm pretty sure dermatologists would use a similar kind of treatment methodology at times. I actually got a similar kind of reaction from Creme Complete in the end.
DeleteAs for the red, shiny, wrinkly skin, yes I saw that too. I've seen pretty much everything at one time or another. I saw the shiny/wrinkly skin when my skin was beginning to transition back from the taut, inflexible BXO skin into the normal-looking skin that has the ridges and valleys that allow it to be flexible. If you graze yourself then get a scab, then it dries out and come away, your skin underneath looks quite red and wrinkles easily too. I think what you just described is only a good thing.
So I hit the comfrey again and more peeling. I have just looked at the toxicity issue and it worries me a little. Mostly because I am applying it to my glans and it may be absorbed.
ReplyDeleteThat being said many people ingest it etc. some people feel the studies have not been very scientific. However is it worth the risk???
But! I found therons wonder comfrey. Alkaloid free!!! Even infants can use it. Problem solved.