CPPS - a new prognosis

[GP2]

I am a firm believer in what you believe you have is an essential part of beating any medical condition. Often the reason why "chronic prostatitis" hit so many men so badly I believe is the prognosis of the condition & not just the major frustration of chronic prostatitis / chronic pelvic pain syndrome symptoms itself. Dr Wise talks of this.

BUT - It's 2006 & times have moved on - we have knowledge unavailable to previous sufferers (including may long-termers on this site). We have access to the Internet & knowledge will spread beyond this forum. What I call for is a DIFFERENT PROGNOSIS FOR chronic prostatitis / chronic pelvic pain syndrome SUFFERERS.

We now know about trigger points, mast cells & their relation to stress, dietary effects on CPPS, relaxation methods, psychotherapy, repressed emotions, personality types & this is great - thank you to this forum / Dr Wise.

What I really desire is a BELIEF amongst us all & eventually amongst the medial profession at large & any future suffers that your not "IN THE SHIT BIG TIME" when you are diagnosed with CPPS.

Maybe from being a condition that effected your quality of life 9 on a scale of 1-10 (10 being severe effect on one's quality of life) now with all this info can we step into a brave new world & say "I have chronic prostatitis / chronic pelvic pain syndrome - so what? Its bad but my life is not ruined" Can we maybe give it a maybe a 7 out of 10 & not a 9 or 10??

[CppsDad]

I think that is very true. I think we find even on this board that people feel somewhat better as soon as they find these forums, and learn about the condition, and what they can do to help themselves. It turns the 9/10 to a 7/10 real quick. Most men are terrified of chronic prostatitis / chronic pelvic pain syndrome because even the doctor doesn't know what to do. That, by itself, can be scary. And then you have to read posts from people all over the internet saying that chronic prostatitis / chronic pelvic pain syndrome has ruined their lives. Yet the majority of these people haven't found our board.

I look at chronic prostatitis / chronic pelvic pain syndrome like a chronic knee problem. It has to be dealt with, understood, and treated. But I no longer consider my life ruined, something I was certainly afraid of 5 years ago.

Mike

[robertpagen]

So this 39 year old former sufferrer feels compeled to second what the above have said. As late as 2001 chronic prostatitis / chronic pelvic pain syndrome was essentially a living death, albeit dragged out into a slow, interminable suffering. And my symptoms had been around since 1984. up until 2001 my symptoms were often as bad as 10 out of 10 and I did not know why they were there. Life was often unliveable in those days.

Now it is 2006. And I guess it is like a bad knee(though my knees are great so I don't know how a bad knee feels). In the past year, only one flare went above a 5/10. and it lasted less than a week. I am often symptom free, I sleep at night, I have normal sex of normal duration. I have sex at least every other day and I can sleep next to the lady I love. (Try explaining to a man or woman without chronic prostatitis / chronic pelvic pain syndrome how wonderful it is to be able to lie in bed without pain) Regularly I am aware of my pelvic area muscles, but that is not pain. Sometimes I urinate once an hour if iritated. These are but minor annoyances when compared to the crushing hell that I lived with from 1992 to 2002.

Still, I am reminded that even a man symptomatic nowadays is probably not treated much better than in those days. I recently picked up a copy of AHIP which I had lent to a urologist in NYC who had treated me in 2002, George Young. When I picked up the book he had not even read it and seemed unimpressed with it's message. I used to think I was from the last group of young men whose lives would be altered by this ailment, but now I wonder how many as we speak are today the victims of "standard medical care".