What I've found after 2 years of this.. hope !

[mbaker]

I've been away from the board for awhile but thought I'd take a few minutes and give you guys an update and maybe a new path for some of you to consider as you work through CPPS. Again, this is my experience so it may not help everyone, but may for some of you.

My pain level is now down to a little penile soreness once a week for a short stretch. I go usually a few days with no pain or so insignificant (15 min) that I don't notice it. I have noticed that extreme stress can bring it back. And caffeine seems to set me off. But I've been able to suspend most of the Stanford/Wise-Anderson Protocol now - I still do some moment-to-moment relaxation just to manage daily stress, but not the rest. However, my pain trend was nearly constant for about 18 months. It would ebb and flow every few months a bit, but nearly constant during the day. I was fine at night laying down but standing back up and moving around brought it right back. The first 6 months or so in 2007 was pretty miserable - I remember buying every brand of underwear known just to find a pair that wouldn't aggravate the pain. I would switch pairs throughout the day as the pain would get better, then worse. Finally this abated mostly where I could go back to boxers, but the pain was still there and many days I just got through until bedtime, a hot bath and some sleep.

I did a lot of walking starting shortly after this happened just to get exercise and take my mind off things. Although walking didn't fix me by any stretch, it did get me much more aware of taking care of my physical health. I'm a normal weight (195 at 6'2"), blood pressure is normal, etc. I have a bad disc in my back, but that's another topic. Overall good health except for the CPPS. I saw many PTs who specialized in CPPS, some good, some not so good. They helped some, mainly I think in just helping me keep my hopes alive that maybe, just maybe there was hope. I also was struggling with the bad disc and was seeing other PTs for that. Along that journey, I had a really good ortho PT suggest I consider taking a Pilates class with a PT instructor in the clinic. I never shared the chronic prostatitis / chronic pelvic pain syndrome with them as that's tough to do with people who've never heard of it, and I didn't feel comfortable. I was initially concerned that it might aggravate the chronic prostatitis / chronic pelvic pain syndrome but I thought, "if it does, I'll just stop".

I started in May 08. I'm still doing it now almost 10 months later. And I can safely say now that Pilates is helping cure me of CPPS.

I write this after monitoring my responses carefully for months now. Initially, I was just tired after a workout. I'd meet the PT at the clinic for 1 hr in the morning once a week. We started with some very basic moves focusing on the transverse abdominus muscles in the core and some in the low back. After I realized it wasn't making me worse, I just plugged along week after week. Then in the fall of 08, I began noticing something interesting which has increased in tendency to this very day. I might awake in the morning with some mild soreness. I'd troop off to class and go through the routine. Really tough. Instructor was gentle but pushed me. Often afterwards, I noticed that my pain was gone or very mild. Might stay that way for the rest of the day. Then come back.

Time passed. My core is steadily getting stronger as I progress up through the intermediate level of exercises 2-3x per week. I'm now doing this on my own now that I know what to do and I have books to assist with new exercises, not to mention YouTube when I need a video example. I began to realize slowly that there was this pattern - I would have some pain in the penile area, I would do my 30-60 min routine at night, finish and the pain was gone. If I was lucky, it would stay away until I worked out again 2 days later. Sometimes it would begin to creep back just as I worked out again. But when I was lucky, it would stay away for the period between exercise days.

I had read a year or so ago about the relationship between the transverse muscles and the pelvic floor muscles that are a part of the chronic prostatitis / chronic pelvic pain syndrome problem. The transverse muscles work in coordination with the pelvic floor throughout the day. However, in most people they are underdeveloped and don't function optimally. So the floor has to do more of the work than ideal. This sets up an ideal playing field for CPPS. So it stands to reason that strengthening the transverse muscles would take strain off of the floor and help the chronic prostatitis / chronic pelvic pain syndrome condition. So that means that chronic prostatitis / chronic pelvic pain syndrome *may* for some of us be a case of an injured/weak floor that can't fully recover through stretching, relaxation, etc because it's doing more work during the day than it should be (ie the transverse is too weak to help). So you could go on like this for a very long time without getting better.

I continue to monitor the pattern, and it's possibly that the last 10 months are an aberration. But I'm hopeful I may have found a solution for myself. I'd be very interested if any of you guys try this out and report back what you find. This may be another useful tool in the kit for us. If you do decide to look at Pilates, I highly suggest you find a good practitioner (preferably a PT) and go to a class for a few months. Pilates exercises must be done correctly with proper form and breathing to be maximally effective. Pilates is all about control (it was originally called "contrology" by Joseph Pilates), but his name stuck rather than his term. You may be shocked at just how weak your core really is regardless of many sit-ups you can do. There are many, many muscles in this region which are not targeted when exercising using weights, etc.

Anyway, that's enough for now. I'll report back periodically with updates. Hopefully you guys will do the same.

Take care,
--mb

[scotcan]

I've had pain for 2 and a half years now and in that time exercise was just impossible, as a result my overall physical health has deteriorated. I used to be quite fit (very fit at one stage) but would struggle to run for 10 minutes now!

Anyway over the last couple of years my pain has gradually decreased, but I still get flare ups and the pain is always there. I decided to join the gym again last year and just did my own thing (running, cycling, rowing and weights), but I would suffer for weeks after so never went back!

This year I joined again with my girlfriend and decided to take some of the classes they offer, to start slowly and work my way back to fitness. The first class I went to was a Tai-Chi/Pilates/Yoga class that incorporated 10 minutes of relaxation at the end. I felt very relaxed and had less pain when I finished the class and have went back every week since.

I agree with you that there may be something in this as I have never once felt worse after doing this class. Some of the stretches are difficult and some I would never have tried a year or so ago, as I would have imagined it would cause an increase in my pain (I get mainly testicle pain), but for some reason I think I actually get some relief!

I'm going to increase the number of classes I do for this to 2 or 3 a week and keep going with the relaxation stuff, as well as seeing a PT. I have my first PT appointment at the end of this month, so hopefully I'll learn more about this then!

[carld]

Welcome news to read...I have always said that power yoga for me works very well...So keep us posted...Please keep in mind that there has to be a healing time where we lay off, but slowly come back with these types of activities.


Best, Carl...

[scotcan]

The one thing I have noticed about some stretching is that a couple of days later I might get a few symptoms that I don't usually get. I sometimes get a burning pain in my rectum and in the tip of my penis, which I haven't had.

I think this might be because I am stretching muscles that haven't been stretched for a while and thats what is causing the burning feeling - Like when you stretch your fingers apart and the skin burns in between after a while. Could this be the reason? Does anyone else get these symptoms when they start stretching after a long lay off from physical activity?