a few comments

[gmccormack]

Looks like a good day for chronic prostatitis / chronic pelvic pain syndrome sufferers without any insurance, now everyone can line up for some nerve blocks, PT, monthly uro visits, pain management, shrinks, all kinds of meds, genetic profiles, scans, etc

I was doing a search this weekend on a chronic prostatitis / chronic pelvic pain syndrome related topic and I came across a board on Facebook, I read through a few of the posts, it is SOOO BAD. These guys are out of their minds, only a few mentioned of PT, relaxation, just fixated on PNE, getting nerves destroyed, bladders removed, etc. I was going to write something but these people are so far set in their ways. Some are obviously muscle related, a bodybuilder who is also a cycler, does it get anymore clear cut? A guy with the condition for 5 years says he found something "that kinda works...Elavil" It took this guy 5 years to find Elavil?!?

It made me wonder, I sometimes feel like the people on this board are the only ones suffering/recovered from CPPS. But in reality there are millions of men suffering and most have no clue what to do. I honestly feel bad for many of them.

[carld]

I have often wondered what many of these men do...If perhaps 3 % of the male population comes down with some sort of pelvic pain syndrome...You have millions of men silently suffering needlessly...If they only knew what we do...

Best

[d_man]

I am so thankful to be on this board. I know I have a long road ahead of me, and I've been dropping my pelvis like it's hot but honestly. I was a lost cause a month ago. I am surprised there is no awareness or organization for men with pelvic pain. I mean, if 9 Million people a year go through this or diagnosed, you would think there'd be some help.

[gmccormack]

dman,

there are a couple organizations

[d_man]

Cool, didn't know. You'd think more uros would know more about treating this. Only the third uro I saw said it was stressed related and I shouldn't have taken any antibiotics. Just saying the awareness is very limited but good to know some exist. And good know this board exists.

[calguy]

Only women get attention for pelvic pain cause of child birth but I wonder the same thing how many guys suffering with this? I think if we went on good morning america there would be huge response from men and docs would take notice. But really we have the answers here, I dont think there is anything else they could do. Pt's do the same for women as they do for us but at least men would know where to go for help! No easy fix guys and the uros are right in major way. . . a lot of this is mental!

[Sherradin]

Even the women are focused on diet and Elmiron. It took me three years while I got worse to find this site and then another year to fly from AUST to the US to see Dr Wise. It took a lot of research. When you're in pain it is hard to take control and make sensible decisions. I had a year of a pain clinic first. What about some of the kids who play active soccer and get frequent urination...It needs a high profile man to go on that big American woman's show whats her name??? You know prime time rabble TV and talk about in in muscular then anxiety terms. Then maybe some more money and people would get behind it. As John at the course intimated this way of thinking will ultimately change the way pelvic pain is managed but it needs a ground swell to convince the urological community. I mean Oprah by the way.

[gmccormack]

It's not going to happen when there are respected uro's looked upon favorably by the NIH that are caught up on other etiologies than PFD. I recently read JC Nickel's paper about the current climate of CPPS. This is a guy who has had some big money thrown his way from the NIH, Merck, PFE, etc. He said we likely will never find the etiology and it is still not known why some men do respond to some therapies (Elavil, quercetin, etc) and others don't. For example, Webslave and others have flare-ups with wheat, I can eat all the wheat I want, does that make his condition different from mine? Sure, but is the source the same? I don't know. Is it just different genetic responses to the same condition? Some people pass out out after a pill of codeine others can eat it like candy because their body doesn't convert it to morphine, a harmless simple genetic difference.

Now you got the proteomics world entering in, with Tanezumab and CC-10004 both immunomodulatory drugs. These drugs they will be able to able to tailor fit to your condition whether it be AIDS, cancer, etc. not blanket drugs.

[carld]

Perfectly said... Many of your comments I find to be spot on and extremely intelligent. I really wish you well...You have worked very hard to try and get this demon under control...I feel you will.

Best...

[scotcan]

I looked for almost 2 years and saw 4 urologists before I found this board or even heard of CPPS! None of the Urologists I saw mentioned anything to do with muscles or stress and just told me I'd get better with time! I actually first saw the term 'CPPS' on a health forum from Australia, and it was a doctor who was suffering with this that posted about TP therapy. Because he was a doctor (Or claimed to be a doctor) everyone kept asking him questions about it - So I did a search and found this site. I don't think there is much information out there because you really have to dig to find anything - Or know the right people!

I have to say this is the only site I've been on where there are 'feelgood' stories! Everything else on the internet is all about people suffering for years and tearing their hair out. I think the fact people on here are positive and encouraging helps many of the other members. When you believe there is a cure, you stop thinking about the pain as much and learn to relax.

Everyone who helps out with this forum deserves great credit for what they have done, without it I think a lot of us would be lost!