UCPPS - Prostatitis, Interstitial Cystitis Forum

Well what can I say there had been some time since I was frequenting this site in search of an answer or just assurance that I wasn't alone. Like before this site provides me with some relief that I am not alone(mind you I wish none of us were in this boat).
My symptoms started about two years ago, and of course there was a lot of worry and concern, which I found only aggrevated my situation making my symptoms feel a lot worse. I went to Uro after Uro, and they never found anything wrong except for an inflamed prostate. Was thrown on antibiotics(which wasn't fun) and told to change my diet, even though all tests(mainly urine and DREs) came up with inconclsive results. My symptoms slowly got better with time, but there was a change in diet(less caffeinne, spice....) and then there was the slight change in lifestyle by incorporating Yoga into my life. All of which seemed to have helped. My symptoms though never actually leaving, were almost non existent.
But still I find that there is penile pain, and as the cold winter months arrive I find that they get worse, which I believe is a common thing with sufferers such as myself.
One thing that I never really mentioned before though was that every now and then there is a sharp pain that I feel like a pin prick, which only lasts a couple seconds. The pain is located on the bottom of my penis about a cm down from the head of it. I also have noticed that there appears to be a little more skin under there then normal, like that of a hood/sheath perhaps I'm not all too sure how to explain it. Perhaps this excess of skin is something that has always been there and I havent noticed it before but have now cause of all the attention the little guy's gettting, and it is supposed to be there. (if someone knows what I'm talking about please let me know)
There is a little burning sensation when I urinate and it gets worse if I have ejaculated prior to releasing my bladder.(In other words it burns when I pee after sex)
I'm also beginging to think that I may have peyronies as well and am going to get this looked into next week. Are there any links between having chronic prostasitus and peyronies.
Some of the best advice that I have ever received about my condition came from you guys, "Do Not Stress", and you guys are right it only does make things a heck of a lot worse. Other than that I have to thank you guys for this website it has provided much peace of mind when it has been needed! Keep up the great work!

Did you ever do any trigger point release? I have found that some of my muscles need more than stretching and relaxation to break down the tension and reduce pain.

Mike

No that was one thing that I never actually got into doing. After changing my diet and learning Yoga I found that my condition had greatly improved. (There was still some symptoms present but I had taaken them with a "grain of salt" sort to speak).
When you refer to trigger point release are you refering to a type of physiotherapy? I will have to look around the forum I'm sure to see what it is that you are talking about.
I'm beginning to think that some of the symptoms that I do have I always have had before I was diagnosed, the pain and uncomfort on the little guy(penis), that wasn't there before, takes its toll on me some days though.
Something that I have neglected to mention is how a lot of what I had done in the first place to alleviate my symptoms I have slowly trailed off of doing. I am back on that road again and hopefully I can at least get back to where I was. The cold weather though is still one heck of a trigger I find.

No that was one thing that I never actually got into doing.

That's both good news and bad news. The bad news is that you never did it and may overlooked a key component in your full recovery. The good news is that you still have a valuable tool at your disposal that you've never tried. This is much better than, for example, someone who has tried everything and who is still getting worse.

If you don't already, buy Dr. Wise's book "A Headache In The Pelvis". Basically, he believes that there are 3 main components to recovery from this: 1) Relaxation, 2) Stretching, and 3) Physical Therapy

Personally, I found that nothing else I did made a difference until I started doing physical therapy and getting my muscles worked on by a therapist. No amount of relaxation was able to break down the muscle knots that were contributing to my pain (the trigger points). Only by breaking these down through multiple therapy sessions was I finally able to relax and stretch these muscles to their full extent (the trigger points can impede blood flow and starve critical areas of oxygen, meaning they never heal properly and/or fully). After getting some PT, I than began to do it on myself and/or with my wife. But I can say straight up that NOTHING else I did made any sort of impact without the physical therapy. So don't overlook it.

As you suggest, read as much as you can about trigger points and therapy on this board to decide if it's right for you. Hopefully, you can add therapy to your arsenal of weapons to beat this condition back. And yes, backing off on your other treatments (the Yoga especially) can be a big factor in your symptoms returning too.

Mike

CppsDad: Are you cured ? I mean, if I spend my money on a physical therapist and a teracane and follow Stanford/Wise-Anderson Protocol religiously for month and months what should I expect ?

I'm looking at all of you guys that are doing trigger point release and I haven't heard of someone getting totally and definitely rid of CPPS. It seem to me that TP is an efficient way of relieving symptoms but not attacking the source problem, which no one really knows about. (stress? allergy? anxiety? microbacteria? aliens?)

You see I am almost 100% sure that my symptoms started with stress.

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And most of my symptoms return when stress is beating down on myself. One of the main problems is that when stress gets my symptoms going a whole new worry begins that is focusing on my symptoms, hence making them worse. I'm not saying that this is all in my head, believe me I've seen and felt a lot that wasn't there before. But I am saying that by reducing my stress levels in the first place greatly reduced my symptoms. On another note is a lot easier said then done when it comes to what we have.

CppsDad I will look at this trigger point that you speak of and see if it is something for me. I get weary about ppl poking and prodding me though

CppsDad: Are you cured ?

I don't think I'll ever be "cured", any more than I can say my back is cured until the next time I pull it out. I can say, however, that I don't take pain medications any more, that I rarely feel impeded by my CPPS, that it doesn't affect my sex life much, nor do I think about it much during the day any longer. I have minor flare-ups here and there now, but I still haven't had to take medication for chronic prostatitis / chronic pelvic pain syndrome pain in nearly 6 months. The minor flare-ups are annoying, but they last a few days, some times longer, and then they are gone again. My pain level is typically about a 1-2 out of 10, sometimes less.

I mean, if I spend my money on a physical therapist and a teracane and follow Stanford/Wise-Anderson Protocol religiously for month and months what should I expect ?

Those are good questions. I am not going to sit here and tell you that the Stanford/Wise-Anderson Protocol, while right for me and I think a good percentage of chronic prostatitis / chronic pelvic pain syndrome sufferers, is the answer for you. I don't know your condition (not without reading all your old posts), nor have I ever personally evaluated you. I would say this, however: You can do the entire Stanford/Wise-Anderson Protocol for free. Nothing. Nada. If you are in pain, and haven't tried the Stanford/Wise-Anderson Protocol, than I ask you: WHY NOT. What have you got to lose? Certainly not money. You can stretch, do relaxation, do external massage and therapy, and eventually, do internal work, all by yourself or with a partner (even better). I saw a PT 15 times, and I've never seen him again because I focussed entirely on what he was doing and how he did it. I probably could have shortened it to just 3-5 sessions, and then taken it from there. My wife learned to be a solid PT in just a few sessions, and I think she is just as good as the PT. I've learned to do amazing things with my Theracane on myself (external and internal), and I can treat my problems pretty well. I can't tell you whether following the protocol religiously for months and months will cure you. For some, recovery is faster. For others, it takes years. I think expecting a full cure may not be realistic for our condition - any more so than a person with Migraine headaches can ever be cured. But they can hopefully be mitigated, prevented most of the time, and shortened. So what should you expect? I HOPE you feel better, but I can't guarantee that. But I am certain you'll at least feel some encouragement from taking some active steps to treat your case. For me, doing the stretching and therapy was the first time I felt like I was DOING something about the condition, rather than waiting for the pain to do ME. So that, alone is worth it.

CppsDad I will look at this trigger point that you speak of and see if it is something for me. I get weary about ppl poking and prodding me though

Not all pain from the muscles comes from Trigger Points, I should add. I think just taut, irritated muscles can cause some discomfort too, and just the act of stretching them, is helpful enough. neeedadvice, do you have a partner that can help you?

To rational and needadvice, I FULLY recognize that PT sessions are expensive. I'm not going to sit here and tell you that you can't get better without them. I believe that a lot of trigger point work you can do yourself (I believe my abdominal trigger points were a major pain center for me - and my Theracane reduced almost all of them). But if you can afford it, and have tried everything else, than going for a basic evaluation with a PT for one session is generally worthwhile. At least after that eval, you can have a better sense of where your problems are. You dont' need to commit to $1000 of sessions. Just be aware that not all problems in the region are easy to diagnose, and some trigger points and sore spots you will only find after a number of sessions, so even if you go one session and stop, don't be discouraged if they don't find much right away. It's my view that some areas are not accessible until the taut, upper muscle bands are worked through first.

Mike