CPPS duration - a positive

[GP2]

An often discussed topic but I wanted to give my views on it..

We have never really got to the bottom of the duration of CPPS, the likelihood of occurrences & the likelihood of continuous pain compared to intermittent pain.

I think when we mention a certain amount of men who have unremitting, continuous pain for many years I think we should be careful. It is my view that most men who come under this bracket of long term chronic prostatitis / chronic pelvic pain syndrome (say over 5 years) have mild - moderate pain for years (usually on & off) which then gets worse after may years. This gives the false impression that their pain has been unrelenting and severe for ten, twenty years continuously. David Wise himself, Latte, Dan in TO on this forum came under this bracket. In actual fact when you think about these cases are luckier than we think. Symptoms for these men are tolerable for many years (Latte tolerated it well every 3 years or so for 25 years & Dan says his pain rarely become intolerable) and then after a long term the big hit occurs. I believe that their cases werent as bad as others where a big hit happens immediately (CPPS Dad, Scotsman). Maybe the state of their muscles didn't get to critical level until years later hence the onset of big pain after many years.

I am yet to see an example of one man on this forum who has been in continuous pain for years and years. Maybe Webslave was one. Even those who seem to be in continuous pain for 2, 3 years if you look closely at their posts this is not the case as they slowly improve over time generally. Or it is because they are not actively seeking treatment?

Continuous unrelenting pain for years & years may be more prevalent but I think it is a fear we should try not to harbour!

[GP2]

Sorry - I am not saying Latte etc didn't have cases that were severe and disrupting. I'm saying that it took many years for them to get to this stage.

[Clay]

This is an excellent point. The internet is a terrible place to try to get a handle on demographics, at least in my opinion.

It seems to me a board like this is incredibly selective. Men who don't have a bad case aren't likely to find it, much less stick around and post. Speaking for myself, I'm more likely to post when things aren't going well.

Thank you for the info on Wise and the others. I didn't realize that. I think I'll go have a better day now.

[GP2]

I just think that especially if you're a newbie it is so critical to "get your mind right" before tackling this condition. That is exactly what I have done & it takes time & understanding. I will write more on this in another post.

I know its a pretty pointless thing to say but if GOD came down from heaven now & said - " Greg, for 2 months every year you will have pelvic pain & then for the rest of the year you'll be ok. This will happen for the rest of your life. Take it or leave it?" I'd possibly take it! Many of us would too. Anyway talking hypothetically doesnt really get us anywhere does it?

[alprost]

I am yet to see an example of one man on this forum who has been in continuous pain for years and years.

Until I started getting PT treatment, my symptoms, both pain and urinary (check my signatutre for more info) were constant and unrelenting.

[GP2]

Yep I realized my error after writing this post. Apologies - I should have said that I have yet to see someone with unrelenting pain who has started treatment and not seen it diminish. I hear that approximately 10% of men never (even with treatment) get better but I believe that now with all the knowledge available to us I think that perhaps the figure is less.

I wonder for these who dont get better man what is causing & perpetuating their pain if TP / SP; dietary changes etc dont significantly help them? I'm sure this has been discussed by more intelligent people than me. Thankfully the treatment methods on this forum work for the vast majority of men.

[scoobysnacks]

I am yet to see an example of one man on this forum who has been in continuous pain for years and years.

Until I started getting PT treatment, my symptoms, both pain and urinary (check my signatutre for more info) were constant and unrelenting.

Yep I was going to say the same thing. I never really knew what wax and wane meant. I kept saying, maybe I dont have this, mine dont go away.

But, I am so tightly wound that it makes sense.

Its getting better. But, my pain was never above a 6 in my opinion. I've been told my threshold is fairly decent from falls, spills, injuries I've had and not really been phased or didn't need strong pain killers.

I would never say I've had 10 on the pain scale.

Regards,

SS

[Rufus]

For the first 8 months, the pain level was at an 8 but quickly diminished to a 1-2 with occasional flare ups to a 4 after sex. The flares wouldn't happen all the time but there was this underlying fear that a flare could happen after my wife and I would get together.

I have not had PT but with time, prayer ( I was never really religious until I got this horrible condition and I wouldn't really consider myself a zelot but who do you turn to in this situation?) and destressing I've got to a point where this condition is tolerable.

I will explore PT with the hope it will eradicate all symptoms and return my life to what it was but I think there's so many conflicting theories on CP/CPPS that it's hard to really know where to begin and attack this issue.

I refer to the transcript from the 2006 AUA conference.
Anyway, I'd like to think that we, as a community, keep our minds open to all possibilities, continue to work hard at maintaining our quality of life and hope for a resolution to this condition.

Happy Holidays

[CppsDad]

My pain was almost unrelenting the last two years before I started treatment. My only relief was maybe a day here or a day there. It was constant.

And unfortunately, I never had any mild symptoms before hand. It just came on, full force, literally overnight. Quite a suprise!

Mike

[Edinburgh94]

My Pain was unrelenting for seven years and came on very suddenly after I caught chlamydia. Having PT is helping and I have found many trigger points internally. I think a lot of sufferers have had unrelenting pain for years especially when it is triggered by infection (i'm not saying chronic prostatitis / chronic pelvic pain syndrome is an 'active infection')

[GP2]

My personal belief is that some of the worse cases are triggered by infection in the prostate /surrounding area usually due to an STD for example. I have met a handful of guys with bad cases who had infections to begin with. I believe Scotsman & Alprost did too. It makes sense because the muscles surrounding the prostate may go into severe spasm as a neuromuscular response to an "alien" infection. I may be wrong.

Greg

[webslave]

Many men are convinced their cases started with an infection, but I have found that when closely questioned, very few have any laboratory proof that an infection was present. Some do have the proof, of course, but it's a small minority. Most base their conclusion on 1) their doctors' assumptions, 2) the painful, infection-like symptoms, and 3) the short-lived anti-inflammatory effects of antibiotics.

[GP2]

Unfortunate in a way isn't it?

I met a guy in Scotland who has been in pain for 7 years & did not want to go on this forum because "it scared him"! Well - his obvious lack of knowledge & progress told me that he needed to visit here again. He also has been to Sebastopol but didn't "agree" with the stress / anxiety theory of CPPS!

[webslave]

I think it is unquestionably proven now that pelvic myoneuropathy (aka CP/CPPS) is a combination of three things: 1) overstimulated pelvic nerves (caused by anxiety, trauma, or other pelvic conditions) and the associated muscular trigger points and pain, 2) mast cell proliferation and degranulation at the ends of these nerves, and 3) in some men, the first two are exacerbated by an atopic (allergic ) disposition (this area deals with foods sensitivities and problem e.g. gluten, the effects of sensitizers like chlorine, etc).

That said, there is a significant subset of men that is deeply invested in the simple idea that all the pain is caused by a mysterious infection, and this fallacy is encouraged by many doctors (still!) and backward-looking websites like prostatitis dot org (which is run by a 75+ yr old cattle farmer, btw).

[GP2]

Of course you're right

I note how you say that other pelvic floor conditions can stimulate chronic prostatitis / chronic pelvic pain syndrome through the over stimulation of nerves & I for one agree. Usually stress / anxiety is the sole trigger & is a partial trigger in all cases of CPPS. However, I note that many men (perhaps more than was previously thought) see a direct relation between chronic prostatitis / chronic pelvic pain syndrome & gastrointestinal / stomach problems.

I think for myself & others perhaps gluten intolerance / IBS was not only a exacerbating factor but also a causal (or part causal) factor. Prior to my chronic prostatitis / chronic pelvic pain syndrome onset I had a one month of very bad constipation. I have suffered with constipation all my life. Perhaps, & its very conceivable, IBS (albeit a catch all diagnosis) / gluten intolerance directly affect the muscles & nerves causing over-stimulation & eventually trigger points. Even without the factor of chronic stress (although IBS sufferers often have big stress issues). Gluten for example in those that are intolerant causes muscle spasms & mineral deficiency (calcium/magnesium/vitamin B that are all vital to muscle health). This is in turn could cause tight muscles in the pelvis region & then trigger points & dysfunction follow.

Nothing knew here & written in lay man's terms but I know for me the SP would not be anywhere near as effective until I sorted out these dietary issues / gastro-intestinal complaints!

Greg