UCPPS - Prostatitis, Interstitial Cystitis Forum

As I have now asatained I have actual damage to my penis I would like to hear your thought on a fix or cure

how long do you think it will be before they can fix me?

i have tissue and nerve damage all caused by extreame inflamation, I must be 1 in a million for this to happen to but it has and I have lost everthing including my girlfriend that I was to marry, we had been together 5 years since the age of 16

You last posted a thread about penis shrinkage here viewtopic.php?p=17085

What do you mean, you have now ascertained that you have penis damage?

ok so it all started over a year ago when I went into hospital with a appendix mass. they treated me with IV antybiotics and sent me home to wate for the operaton, 7 months later I had the operation to remove the appendix, a month after that I started to get really bad bladder problems. this then turnend into palpitations and shakes and my penis shrunk up.
i then developed a feaver, my glands came up I started to get pain in the anus and penis then I got huge hives come up all over my body including my penis that came up like a huge red baloon, after this everything slowly started to get better apart from my anus and penis, my penis was still shrunk up and now had pain to it and looked totaly differant.
the tissue felt much harder and the whole shape of it was differant. it started to extend to its normal lenght but there was nothing to it in girth and on feeling it, it was like feeling some tough old rubber rather than a soft spong there is also a hard painfull lump half way down the shaft. I have no abbility to get an erection and constant pain in the penis and anus.

through the strange series of events what has happened is the tissue in the penis has basically been destroyed the urol can't really explain why other than an adverce reaction to inflamation. I am going to try to get an MRI to see if they can see any more into this but I'm not hopefull there is anything out there that can help

Unheard wrote:the tissue in the penis has basically been destroyed

I can see no reason for you to come to this conclusion. Have you seen a psychologist about this problem yet?

it was not me that came to it

What amazes me the most is how we tend to overlook the powerful effects of stress yet we will look everywhere else for the cause (bacteria, pollutants, etc..) There is ample literature that shows how stress causes health problems.

When I was at my worst I had many physical problems besides just pelvic pain but I really did not consider that stress was the primary cause.

For the most part I consider myself about 90% better and keep improving slowly but surely. I am now convinced without a doubt that stress is the not only the primary cause of this problem but it is the fuel that perpetuates the problems too.

Personally I have found the following to be essential for my stress reduction: Cognitive Therapy (Byron Katie Work), Meditation, and the right kind of excercise.

I'm sorry but I had to jump in on this!
NoMoPain has it right I believe for most of us. Upon diagnosis of having this condition I have begun to realize that I myself can be a really anxious person. A feeling of uncertainty sometimes pops into the back of my head for no apparent reason. I also began to notice that I would think the worst about whatever may ill me in any way. This was the case with the begining of my symptoms. Even a simple visit to a specialist who doesnt seem to find anything that concerns him/her is enough to releave a little bit of stress, enough sometimes to alleviate most of my symptoms.

I am a strong believer that stress has cause a lot of what bothers me symptoms wise. I mean when I am stressing about work I get a flare up, or at least a lot of my symptoms return. When I am happy and having a good time with others then I tend to not have my symptoms anymore(or at least they arent as noticeable). Meditation/relaxation had helped me out greatly in the past, its a shame that I slowly stopped doing it as much, and when I did slow down my symptoms slowly began to return.
I am currently back into it again and slowly but surely I begin to feel better.

Needadvice,

You have given yourself the advice that you seek, I think that is really cool. Since you clearly see the connection between stress and symptoms you are way ahead of the curve to recovery.

I am working on my own transformation from being a stressful person to a relaxed and low stress person. I am convinced without a doubt that this will get me to a 100% and living happy and at peace.

NoMoPain

I will admit it is very easy for me to type that, but for me to actually go through with it is a long and hard process. Like I said I have begun to notice little things that would upset me. Its tough trying to not get worked up over things that you have always been worked up over. Some1 else on this forum had mentioned to me that most of us sufferers tend to be controlling people who tend to be anxious, this is me to the "T" at times, then at others it isn't lol.
But when something small tends to get me going, my symptoms return, and then a whole new set of worry and stress begins. It is this cycle that I believe that we all have to find a way to cope with.
The road that we are on is a tough one to walk down, but at times it is a little releaving to see that I am not alone on this journey. (Its too bad we couldnt find a short cut or perhaps a smoother road)

Unheard,

I dont know much else to tell ya in terms of comforting advice except try and relax and calm urself down. This is gonna be tough, but believe me that once you can do that then all the other options that are available(found all over this forum) will be easier to cope with. Try and not think of anything as being permanent and a lost cause, this will only send you spiraling down a road to more pain I'm sure.

First off, I'm sorry to hear about your problems Unheard.

I am not sure you want to hear talk about your problems being psychologically triggered, and there is no reason to believe it from what you write - that's my opinion anyway.

If you have some sort of structural damage to your penis, I think you should seek out the best specialists, and see if they can help - or know what the future might bring of treatments.

Even so, A lot of people with our kind of problems experience the penis shrinking, getting hard and bloodless +++ - and loose function.

My best advice to you is to seek out a psychotherapist (not a psychologist or psychiatrist). A psychotherapist can help you with the obvious stress and emotions you must be living with right now. Your symptoms might not get better, but you will have someone help you deal.
A lot of people also get relief from bodily symptoms after being treated by psychotherapists, so that might be a bonus.

Do you have conclusive diagnosis that the tissue is destroyed? Have you had second opinions?
The body tends to rebuild itself, so I hope this will happen for you - even if it might take some time.

I am really sorry to hear about your problems.. and I am sure everybody agree that we are here to hear what you want to say. I agree with Moonrock that the problem does not sound psychological, but I might be wrong. Stress can be at the root of too many probelms, also could possibly cancer over time , but a cancer patient will hate to hear somoene telling him don t stress... he needs a solution..

I get frustrated when medicine tend to blame everything unkown on stress.. This year Nobel Prize winner is the guy who changed peoples belief about ulcer and saved many. DON T GET ME WRONG, I am not suggesting that our problem is bacterial, but I DOUBT IT SIMPLY IN THE HEAD.

UNHEARD you really need to see a doctor, and many actually till you find someone open to hear everything you have to say and maybe you will find a solution together with your doctor.

Penis Shrinkage and the loss of sensation and the annoying rubber feeling is also what I have. And god knows how much this makes me sad. As you, I said to myself what were the chances to get something like that.. I wishes I had 100 times more pain and 100 times less ED problems. But that s life.

I guess it is clear that blood is not flowing normally. How can I tell ?
for me it is worse during the winter and cold and stress too.. or when I drink a lot.. what I would really suggest, id for you to run and excercise, to keep moving , this has helped me a bit.

Your story is muc more different than mine, and I can t see why and how you had this, if this is a chronic prostatitis / chronic pelvic pain syndrome symtom or other.
Stanford/Wise-Anderson Protocol is by far the best protocol yet. I d say If it succeeds from 30-99% in getting rid of the PAIN problem, my experience and from my communications with others it seems to be much less helpful in beating ED , but quite helpful.
In fact, in case you have trigger points in you stomach, I heard this could affect the blood flow to your pelvic area. For me it is a simple excercise to see this. I just need to trigger my stomach either with stress or heavy abdominal excercises and minutes later, my penis shrinks and feels dead. something of course I never had before. and no it is not in my head. People are sometimes smart enough to know whether a problem they are having could be psychological or not.

Unheard pls be in touch , I would like to know how is it going for you

I'd just like to second (third, or 10th) the notion that stress can exacerbate everything. Like many of us, I too have learned how rotten stress is on my body. It's caused horrible problems. It's funny that I never thought I was an anxious person beforehand. I guess I kept it bottled up inside, and tightened and tightened my way through every problem. I've become better at letting it out, even if it makes me feel weaker. But recognizing this trait in myself was a big step for me. In my case, it was a MAJOR step in helping to reduce my anxiety problems, and has been a big step in reducing CPPS. I'm currently going through IBS problems now, but I think stress played a part in setting that up too.

Regarding physical damage to yourself. I agree that you should seek out the best treatment possible there. This is one area where you don't want to feel left out in the cold.

I too have had the "numness" and "limp noodle" feeling before, although these times were rare and time limited.

If you can't see a specialist about your stress and anxiety, try taking some classes. My HMO offered free 4 hour seminars on both, and they helped me tremendously. I don't know why you need a psychotherapist verse a psychologist (my wife is a psychologist and she treats anxious and stressed out people all the time), but whatever you do, start helping your emotional state. Get control emotionally, and I think you will be able to get control physically too.

Michael

Unheard,

I'm sorry to hear that a doctor has detected nerve and tissue damage. I remember your first post and I was hoping that it wouldn't come to that. I can only imagine how you feel right now.

I agree with the last few posts that you deserve counseling to help you deal with your injury.

Obviously, as lay people we can't give you good medical advice for penile tissue damage, particularly becuase that is generally not what people with chronic prostatitis / chronic pelvic pain syndrome deal with.

But you might want to do some reading on your own about things you might be able to do. In particular, take a look at this Wikipedia entry
[linked on Dec 5, 2005] http://en.wikipedia.org/wiki/Peyronie%27s_disease
Note the mention of surgery being an option for correctoin of fibris tissue.

Only a professional medical doctor could tell you if this were an option for you, and only if they saw you personally. But it might apply. Its at least worth you mentioning to the doctor.

Also, keep in mind that damaged nerves can heal over time, though it generally takes between 6 months and a year, or so I have heard. You might want to talk to your doctors about that as well.

Please keep us informed.