CppsDad's success story

[latte]

Since I can't respond to CppsDad's success story under that section I would like to respond to him in the general discussion section. First, I am very aware of the helplessness you experienced for several years as I did. No one seemed to have any idea what was going on. I dreamed about having a relative in the medical field that could find someone who had a clue. Great that we both found a better way.
I also did the SP for several months and endured over thirty PT sessions and at the end of this cycle(January 2005) I wasn't much better but a strange thing happened and you described it as well. After I completed the PT and still did the relaxation tapes I started to get better. It was like a delayed reaction. I couldn't understand it but the improvement was lasting and now I don't do the tapes or go to PT and feel pretty good most of the time. I rarely take my cushion out with me although I still sit on a cushion at work and to drive. When my pelvis aches I do the stretches the PT showed me, take a hot bath and lie down. It goes away. I haven't taken any pain meds in a long time. At one time I was taking codiene regularly. Thank you so much for sharing your story, I lived it also.

[robertpagen]

I can't tell how long you sufferred from this as you have not filled out your banner.

Robert

[HuckFinn]

CPPSDad

I'm heartened to hear about your progress, and I've actually got more good news for you: I predict further significant improvements for you in the coming months. I say that because your story very closely parallels mine, except that I've been doing SP for 15 months.

Like you, I was in debilitating agony prior to beginning SP. I attended Dr. Wise's six-day clinic in June 2004. I was extremely impressed with the program and found it well worth the money. And like you, I was significantly better after a year of paradoxical relaxation, trigger point and stretching (I was very dedicated to the regimen, never missing a day)--with either no symptoms of minor ones at this point, depending on the day. Better still, I can still detect continuing improvement from month to month. In just the past two months, I moved into a status where I really don't feel limited in any way by my CPPS, though I do still notice mild pelvic discomfort, typically later in the evening and during my relaxation sessions. During the day the symptoms are basically nonexistent. And about six weeks go, my urinary urgency pretty much went away after 15 months of always having to scope out the terrain for the nearest bathroom. Two weeks ago, I took my first vacation in nearly two years, and I genuinely had a great time with no concerns about pain, bathroom needs, or setback. I was absolutely thrilled!

I plan on continuing the SP regimen for life. My advice to anyone considering adopting the SP protocol: just do it. And remember, it's a slow fix, not a fast one. Think a healing time frame of 1 to 2 years. It takes patience, but it absolutely does work if you stick to it.

--Huck Finn

[latte]

I have had pelvic discomfort of varying degrees since my twenties and I am now in my fifties, but the chronic prostatitis / chronic pelvic pain syndrome really got bad in 2001 and I was a mess for a few years. It has been now about four years and I am doing pretty well. I keep my expectations low but I do not obsess about it anymore, just deal with it.

[CppsDad]

I'm glad to hear others had similar stories to mine and are getting better. This post itself has reason to move to the success stories posts, given all of your own successes.

I also did the SP for several months and endured over thirty PT sessions and at the end of this cycle(January 2005) I wasn't much better but a strange thing happened and you described it as well. After I completed the PT and still did the relaxation tapes I started to get better. It was like a delayed reaction.

Latte, I think for me this had to do with the fact that with the continual PT, we were always stirring things back up, creating pain again, and so I never got to see the results of the work until we stopped everything completely. It takes time for sore muscles to heal, and since I was doing 2-3 sessions per week for a few months, I was never fully healed prior to doing another session. Since that initial improvement, I've noticed other incremental improvements occurring in much the same way (i.e. I'll do a few weeks of hard therapy with my wife or by myself, have flare ups, but after stopping that phase of therapy, I feel really good when the last flare-up ends).

Keep at it guys. I'm inspired as we speak, and I'll be doing some really good stretching and relaxation tonight!

Michael

[Dj Smitty]

CppsDad...I just read your progress report over in another part of the site.

Man, you really had it bad eh? Jesus...I've never been THAT bad at all. The most distressing thing for me is when my urinary symptoms get difficult, but they've been ok lately. I don't think my pain has ever been intense enough to actually make me stay home from school but just having that chronic dull ache has put me in moods. I consider myself fortunate that I haven't had it nearly as bad as some people.

In everyone's experience, does it typically get worse over time or better?

[treynor33]

So far in my experience. Things can change. My first few months were pretty bad and then I went along pretty well for about a year. I had bad days but for the most part it was pretty predictable. Now for the last 3 weeks things have gotten worse. I also have different things happening. I never had any testicle pain before and now I have some minor testicle pain. Also alcohol and ejaculation never bothered me till the last 2 months. I thought I was past the worst of it.

However, since I thought I was past he worst of it, I probably wasn't doing the right things, i.e., relaxation, sex in moderation, watching my alcohol etc. This crap will always come back to let you know it's still there if you don't continue to work on things and restrict the things that "may" cause problems. So for those of you that things like alcohol doesn't bother, don't think that they never will. Things change.

One thing that is better is where the problem is. In the first few months my bladder was very involved, now everything is lower and pain and discomfort doesn't get up in my bladder region. Although some of the pain and sensations can cause some frequency. When the problem is in your bladder or near it things are much worse IMO.

Also if you have anxiety issues, they MUST be worked on. I think that is my big issue and now I am just working hard to get back to where I was.

[robertpagen]

It is a challenge to decide at what point to stop doing PT. I too had the experience of doing about twenty sessions of PT over four months yet experiencing the improvement most after stopping. Then three months later when I resumed PT it flared up again. Made me miserable for two months. How does one choose an end point for PT?

[robertpagen]

CppsDad or other old Hand,

Is it reasonable to fear that too much Pelvic muscle manipulation through the anus could cause a problem with the rectum or bowel movements. I mean that is an important function and I don't want to screw up those muscles or the lining inside the rectum. I feel like my body is telling me to stop invasive manipulation by aching. I also don't feel comfortable when the pt reaches in to push on Coxxyx. I'm just plain scared after I had a flare caused by PT in July and even 7 subsequent PT treatments did not make it dissipate. I had been feeling great for 3 months while off PT and I only went back because I thought at that point IT couldn't hurt.
Maybe you are right that the body needs a break for the muscles to relax.

[CppsDad]

Man, you really had it bad eh?

I think I had it really bad, but that's just my own opinion. I never had significant pain during urination, only small problems here and there, and many have reported that that was their worst symptom. For me, I had so many things going on that I was truly lost, and had no idea what to do. Unfortunately, you can't fix them all at once, so it was important for me to do therapy and know that I was going to have tons of pain and flare ups, and just be patient while we unravelled the problems one at a time.

Jesus...I've never been THAT bad at all.

Also, and I do know this from experience, it doesn't mean anything if someone else had it worse than you. The fact is that YOU are in pain, and because others are worse doesn't make your mood much better. People would always tell me things like "it could be worse, you could be in Iraq getting kidnapped". The truth is, that stuff like that made me feel worse, because not only did I feel guilty when they said things like that, but they made me feel bad for feeling bad. I have no doubt that being kidnapped in Iraq is worse, but it's just not that easy to get passed being doubled over in pain and being depressed and anxious. So don't worry if you think someone else had it worse, because each of us is entitled to feeling screwed in the whole situation.

Keep your head up, things do get better over time. And sometimes you have flareups (I'm having a minor one this week). But overall, things should get better.

Maybe you are right that the body needs a break for the muscles to relax.

I do think that a body needs a break here and there. But don't stop stretching, and try to keep up the trigger point therapy externally as much as possible. I'm getting ready to start another round of internal work, and I know that that will be rough for a few months. But after it, things will improve.

Mike

[Dj Smitty]

I still feel really bad for you though mate. Like tonight, right now I'm really drunk, I had a great night out. My symptoms go into remission for days at a time and then get horrendous. But I'm still able to have enjoyable nights with my buddies and the ladies. I kinda feel it the day after, especially in the bladder area.

it's so frustrating that it varies so much between people.

[CppsDad]

I still feel really bad for you though mate.

I appreciate the sentiment, but there's no reason to feel bad for me now. I'm clearly into the recovery stage and there are plenty of other people to feel bad for at this point. If you are feeling bad that I had it so bad in the past... well, many of us are ticked off at the time we lost over the bad years. Can't look backwards though! Got to look forwards!

Mike