Rant on CPPS and Research Efforts (or lack of)

[HateCPPS]

I know CPPS/CNBP has many different symptomatic properties amongst those who suffer, but broadly I feel like the research efforts are absolutely terrible.

One thing I do not understand is why everything that is done research wise is always drug trials. (Drug trials, drug trials, drug trials!) I don't think we are ever going to find a pill that cures CPPS.

I feel like with having this disease over the last 5 years I have noticed a lot of physical problems and physical problems that happen in sequence. Example being: Urinating after ejaculation. Before I had this problem I would ejaculate and could immediately go to the bathroom and urinate with the boldest stream ever. Now I have a regular semi slow stream but after I ejaculate and try to pee right after it's like the pipes have been sealed off completely. I could have a pretty full bladder (needing to go) but when I go the urine drops down straight, without a stream, because it is so blocked up. Or I pee in a sideways direction. Or it looks as if I am spraying a hose with my thumb over it. Now is this because of my muscles are tighter post ejaculation? Is it because my prostate becomes more inflamed during ejaculation? Is it because my ejaculate is not draining completely - bloating up my prostate? Or a combination of all?

Now if you asked doctors this, no one doctor would give you the same answer. Why can't we study this? Doctors have looked at men and women having sex under MRI. Why can't we do something like this with CPPS? I feel like there is very little study of what is actually going on physically in the prostate and pelvis with this problem. We have surveys and surveys and spend 2 million dollars on a drug trial and find out that the NIH score went from a 34 to a 31 when giving XY drug and that was 4.3% better than placebo, but we can't put one guy in a MRI machine and find out what's going on physically in the pelvis post ejaculation that makes everyone in great pain. I feel like capabilities have to be there. We have Tesla 7 machines that can show the tiniest speck in the brain. Can't we look at pelvic floor muscles and the prostate using TRUS/MRI and figure out what's going on in comparison with a normal guy???

My theory on my case is that my prostate has some sort of damage. I feel like there is an issue somewhere which is leading to things not draining correctly. I think the muscular tightness I have is a response to my body wanting to expel prostate fluid that has not fully exited during ejaculation. Which leads to all the muscles around the prostate to clamp down around it to squeeze the prostate like a sponge. But I think something is damaged and not draining properly, so the squeezing process is there for 24-48 hours, instead of a normal guys just releasing right away. Now I know if I do not ejaculate for 2 weeks my pelvic muscles will feel a lot better and muscles will be looser. But as soon as I do it's back to day 1 again. I've went to over 30+ PT visits and any relief if any that I do get does not hold. I just can't figure out what is going on and I am out of things to try.

A study that is currently going on through the NIH is about pain in the brain. Now this uses F-MRI to look CPPS patients brain and how their brain activity differs from people without chronic pain. Now is this a nice step? Yes. However, I think the NIH is completely after the large scope of finding something to fix chronic pain amongst all the other illnesses and it's kind of just a little side way of bringing CPPS into something. This idea that the brain doesn't realize that something was wrong in the prostate (I.E. an infection that went away) and keeps the inflammation muscular response there indefinitely sounds like BS to me. I can see the tension problem but I know there is many of us out there who have tried all the options available properly with no luck.

Maybe stem cells are the answer....

Feel free to share any thoughts and ideas. Thanks for reading.

[webslave]

I think the interest in the brain is because there is a loss of grey matter in many chronic pain conditions, including CPPS
http://www.jurology.com/article/S0022-5 ... 4/abstract

[MajorSky1]

Definitely the brain. It's where the pain is ultimately felt, and imho where CPPS starts. We often think of the brain as this separate organ up in the skull. The fact is that every nerve in the body is connected to it, and every muscle in the body is connected to a nerve.
Every emotion you feel, including the ones that we swipe aside are in the brain which is connected to those nerves, which are connected to the muscles.
There is SO MUCH to learn. I often wonder if CPPS is a direct litmus of the true amount of stress we have on us today. It's a certain kind of pressure that I wonder if any other century of human existence has ever had to deal with.
That, or glyphosate (which they're finding out is actually NOT good for nerves).