Update - September 2018
Wow, has it really been 10 months since my last update!?!
I thought I'd give an update on where things are currently at for me, with regard to my whole health. This isn't just about BXO/LS. It's about my entire health. Perhaps some of this will resonate with you.
BXO is referred to as an autoimmune disease. This is a term used to describe conditions whereby the body mistakes its own tissue as foreign, and begins to attack it. Multiple Sclerosus. Hashimoto's thyroiditis, Lupus, Rheumatoid Arthritis, Inflammatory Bowel Disease and Graves disease are all examples of autoimmune conditions. There are others also.
Another term for an autoimmune disease is a 'we don't know' disease. Western medicine cannot determine the origins of autoimmune diseases. It can do a pretty good job of treating the symptoms in many cases, but comes up short when identifying the underlying cause.
This is one reason why BXO has proven so fascinating for me. Not only was it a disease that had a direct impact on me, but it's a heavily-neglected disease (particularly in men) without known origins. Not as hard to become a 'star' by finding information on it that nobody else has, in other words. Necessitiy is the mother of all invention, and I most certainly had a strong drive to resolve my BXO when it was troubling me. Hence why I set up this blog.
In my search, I discovered a lot of views I thought were somewhat airey-fairey. Some people (usually women) went so far as to say they believed their Lichen Sclerosus was caused by grief around their relationship, or sexual shame about their past. At the time, I wrote it off as utter nonsense, but over the last few years I've come to understand the link behind mind and body, in terms of health.
I had another 'autoimmune disease': Inflammatory Bowel Disease. I first showed symptoms about six months after my marriage ended. It was probably the most stressful period of my life. To me, IBD didn't just come in for no reason - it came in because stress had heavily compromised my internal health.
And here's the thing. People don't leave happy marriages. Mine had been broken for about 6 years before it ended. I developed BXO at the time when my marriage was painfully broken. While I didn't realise it at the time, living in an unhappy relationship is incredibly stressful, just in a different way to leaving one.
So that's two health conditions potentially caused by emotional triggers. Keep reading...
Finally, when I first entered the workforce, it didn't take long for me to develop chronic fatigue. I eventually crashed when I ended up with Glandular Fever, which took me out for about a month. The chronic fatigue stayed with me for years afterward, before I met someone who suggested I treat myself for adrenal fatigue. I did, and back came my energy levels.
Adrenal Fatigue is common among people who don't handle stress well.
That's three medical conditions, potentially occurring as a result of stress.
I still have IBD, I feel I've pretty well cracked BXO, and I occasionally suffer from adrenal fatigue. In other words, I have a problem with stress. I realise that now. I'm working hard on the way I deal with stress to make myself more healthy. In all seriousness, I'm probably sitting on a shorter life expectancy at the moment. I'm fortunate to have had the issues I did when I was otherwise fit and healthy. But imagine if I came down with something like this if I was 20-30 years older.
So, I am particularly interested in your own stories. If you don't feel comfortable sharing, then I understand. But even if you just write something in the comments indicating whether you were in a truly happy place when you came down with BXO. Alternatively (or as well) I'd be interested to know if BXO was/is the only autoimmune or stress-related illness you've had or whether there have also been others.
I'd really appreciate that.
I thought I'd give an update on where things are currently at for me, with regard to my whole health. This isn't just about BXO/LS. It's about my entire health. Perhaps some of this will resonate with you.
BXO is referred to as an autoimmune disease. This is a term used to describe conditions whereby the body mistakes its own tissue as foreign, and begins to attack it. Multiple Sclerosus. Hashimoto's thyroiditis, Lupus, Rheumatoid Arthritis, Inflammatory Bowel Disease and Graves disease are all examples of autoimmune conditions. There are others also.
Another term for an autoimmune disease is a 'we don't know' disease. Western medicine cannot determine the origins of autoimmune diseases. It can do a pretty good job of treating the symptoms in many cases, but comes up short when identifying the underlying cause.
This is one reason why BXO has proven so fascinating for me. Not only was it a disease that had a direct impact on me, but it's a heavily-neglected disease (particularly in men) without known origins. Not as hard to become a 'star' by finding information on it that nobody else has, in other words. Necessitiy is the mother of all invention, and I most certainly had a strong drive to resolve my BXO when it was troubling me. Hence why I set up this blog.
In my search, I discovered a lot of views I thought were somewhat airey-fairey. Some people (usually women) went so far as to say they believed their Lichen Sclerosus was caused by grief around their relationship, or sexual shame about their past. At the time, I wrote it off as utter nonsense, but over the last few years I've come to understand the link behind mind and body, in terms of health.
I had another 'autoimmune disease': Inflammatory Bowel Disease. I first showed symptoms about six months after my marriage ended. It was probably the most stressful period of my life. To me, IBD didn't just come in for no reason - it came in because stress had heavily compromised my internal health.
And here's the thing. People don't leave happy marriages. Mine had been broken for about 6 years before it ended. I developed BXO at the time when my marriage was painfully broken. While I didn't realise it at the time, living in an unhappy relationship is incredibly stressful, just in a different way to leaving one.
So that's two health conditions potentially caused by emotional triggers. Keep reading...
Finally, when I first entered the workforce, it didn't take long for me to develop chronic fatigue. I eventually crashed when I ended up with Glandular Fever, which took me out for about a month. The chronic fatigue stayed with me for years afterward, before I met someone who suggested I treat myself for adrenal fatigue. I did, and back came my energy levels.
Adrenal Fatigue is common among people who don't handle stress well.
That's three medical conditions, potentially occurring as a result of stress.
I still have IBD, I feel I've pretty well cracked BXO, and I occasionally suffer from adrenal fatigue. In other words, I have a problem with stress. I realise that now. I'm working hard on the way I deal with stress to make myself more healthy. In all seriousness, I'm probably sitting on a shorter life expectancy at the moment. I'm fortunate to have had the issues I did when I was otherwise fit and healthy. But imagine if I came down with something like this if I was 20-30 years older.
So, I am particularly interested in your own stories. If you don't feel comfortable sharing, then I understand. But even if you just write something in the comments indicating whether you were in a truly happy place when you came down with BXO. Alternatively (or as well) I'd be interested to know if BXO was/is the only autoimmune or stress-related illness you've had or whether there have also been others.
I'd really appreciate that.
Hello,
ReplyDeleteThanks for your blog. English is not my first language, so I may make some mistakes, but I will try my best to be understood.
To answer your question, my BXO is definitely related to my psychological state. When it started, I was in a low point in my life. It was after I had broken up with a long-term relationship. That girlfriend had cheated on me for months behind my back with a guy I knew. At one point she admitted she was having an affair, but made up a name and didn’t tell me until later it was with him. When I found out with whom her affair was, we broke up “officially”, but I continued to see her, trying to fix things up. She was psychologically abusive and she completely destroyed my self-esteem (in general but also sexually). She was saying things like “you’re not good in bed” or “you have a small penis”, which is not even true by the way, but it got in my head and I started to believe it. When the BXO started, the disease itself stressed me and played on my self-esteem, so it became a vicious circle.
I’m not sure if the psychological state is the only factor, though. In my opinion, I tend to believe that BXO (and most things in life) happen because of multiple factors that interact together, creating a perfect storm, and rarely because of a unique cause. But in my case, at least, my mental state is definitely a huge factor. My BXO definitely gets worse when I feel stressed or depressed, and it gets better when I feel good.
Since a few months, I started doing meditation, self-hypnosis (I create clear images in my head that my BXO is healed and that my skin is normal, and that it gives me joy). I am also interested in mindfulness and do different things to improve my self-esteem. The results are almost immediate. When I do these things on a daily basis, my BXO heals and gets better. When I get lazy or too busy and start to skip days, my BXO comes back.
Also, a strange anecdote: I stayed single for years because of my BXO. But this summer, for the first time in years, I started to consider getting into a relationship. I started thinking that it would probably be possible even if I have this disease, and I even went on a “date” with a cool girl who works in the same building as me. Nothing sexual or romantic happened with her. But strangely, the only fact of considering getting into a relationship or into sexual activities seemed to have almost healed my BXO… because during this time, my skin started to look WAY better than it did in years. It’s just a theory, but I started to think that, maybe, a part of my BXO is my mind trying to keep me away from women and relationships because, unconsciously, I associate relationship with danger of getting hurt! Just a theory, though. But when it comes to stress and self-esteem, I'm 100% sure that it has an impact.
Thanks again for your blog, and I’m looking forward to continue reading you.
Thanks so much for sharing your story. Your English reads fine, by the way.
DeleteA good example to explain how I believe the mind/body connection works is viral illnesses. People who aren't getting enough sleep, are constantly stressed, are depressed or tired or whatnot, are more likely to get sick from the common cold than those people who are mentally healthier. To get sick with a cold requires two things: Exposure to the virus, and the right environment in the body for the virus to spread.
Perhaps BXO is the same - it requires multiple factors (one being, an optimal environment within the body) to all exist.
The old saying goes "laughter is the best medicine" but actually, I think you could extend that and say "happiness is the best medicine". That would certainly help explain the phenomenon you described, where your symptoms felt like they had cleared in anticipation of a relationship possibility.
Another thing I've started doing lately is to stop thinking of named diseases as such. We call it "BXO" or "Lichen Sclerosus", and that mere diagnosis of a 'disease' makes it seem so 'final'. But in fact, that is simply a label that practitioners use to refer to the condition we have. You could also say "I have white skin on my penis" and it would define the same thing, but removes all the predefined boundaries that western medicine has taught us about it.
I have recently been diagnosed and found your blog. This is the best source I have found and thr sole place for me to find people who actually know what this is like. So to respond to your question here I was thinking about something interesting relates to autoimmune and that is the lymphatic system. I belive this might be the ley and when I was young I was diagnosed eoth lymphadema in my right wrist. This simply mean the lymph node doesn't clean thr blood properly and leads to carteledge build up. It is a weird correlation and not one I I.sure that makes any sense but nonetheless I think it is interesting.
ReplyDelete