New and wondering

[samgg10]

Hey everyone, it's been great to find this place - I've been searching & reading all day. Still thought I'd post.

After having mild frequency issues for the past 2-3 years, which I mostly shrugged off, I developed a much-exacerbated form of the same about 8 months ago. Heavy frequency, urgency, pain in the penis/urethra, and (more recently) minor suprapubic pain toward the left side of the pelvis. Symptoms worsen after a bowel movement, and frequent constipation probably contributes heavily to what's happening here. It's not constipation as in "not going", but in having multiple small stools and having to strain to clear even a couple of them (I know now not to strain and have had mixed success treating the constipation, but with definite quality-of-life gains when succeeding).

Still, the penis pain is the real issue. It ebbs and flows but almost always follows me. I know a lot of you have similar issues. What confuses me, even after all this reading, is that I have no associated pain beyond this small suprapubic issue which I could swear had not existed even a few months ago despite relatively rough penis/urethra issues (plus the omnipresent post-ejaculatory flaring).

I've seen a Uro and, like many of you, thoroughly baffled his battery of (sickeningly invasive) tests. Also did not respond to antibiotics.

Now I'm seeing a PT for internal/external myofascial release. PT says my muscles are extremely tight, especially on the left side, and all of it makes sense except the seeming lack of trigger points. I have not felt the sensation of referred pain, or extreme pain of any kind, during our 2 sessions. Of course I want to improve as rapidly as I can, notwithstanding the stretch & relax philosophy I've been adhering to for the past 2 months, but I worry that the PT isn't going as well as it might be. I am in a flare this week, which might be consistent with good PT, but the lack of any discernible pain (beyond discomfort) during or immediately after our sessions is the nag.

Is this normal for successful PT? Is there any way I can assist in identifying problem regions for my specific symptoms? I guess I'm also asking: does anyone recognize themselves here? Am I moving the right way?


Also, I can complete vigorous exercise (competitive sports like basketball and soccer) without any real pain issues. The pelvic pain dissipates after a few minutes of concentrated effort on the game, and the relief lasts for hours. This seems unusual, given what I'm reading here. It ties into my last discovery:

I'm an avid fly-fisherman, and I've discovered that fly-tying itself is a major source of pain-relief for me. Very relaxing, makes sense. I can consciously consider my pelvic pain issue without triggering it anew. Still, is this type of activity something that might contribute to healing my overall condition (muscular, fascial, mental) or is it an oasis? (edit: even though it involves sitting for long periods). Same Q for vigorous exercise.

I mean, should I increase the role these activities play in my life in an attempt to heal myself? These are some of the only times I can quit the pain.

Thanks guys. I know I'm going to beat this thing. We all are.

[extreme3]

First off, welcome to the forum - you've come to the right place. Your story echoes many others I've come across here, including my own.

In my opinion, the answer to your question is a resounding 'Yes'. Do whatever makes you feel better and don't become obsessive over your condition. This affliction demands deep introspection along with the necessary lifestyle adjustments. In my case, I've needed to change my expectations out of life, drop some of the Type A personality traits and focus more on those little things that do improve my symptoms (e.g. taking time to relax - really relax!, exercise, spend time with the kids, feel 'ok' with doing NOTHING when I feel like it). I know I'm not going to do everything I've always wanted to do in life, but it's not because of the condition, it's because I've come to the realization that I'm overreaching and should focus more on what I do have and not what I don't.

Best of luck. I am 100% sure you will get better.

[samgg10]

Thanks for the support. Taking the time to do nothing at all is definitely an eye-opener. That will help. And I'm sure we all obsess over this a fair bit more than we should, but you know how that is. Still, and I really don't want to call you out because I see this constantly across the forum and because you mention overreaching more as a personal stress-trigger you needed to eliminate,

...I can't help but be a little piqued by the willingness to accept a long-term lower quality of life among many chronic prostatitis / chronic pelvic pain syndrome suffers. Maybe my symptoms are mild and I'm overly optimistic. I mean, they don't feel mild, but they also don't measure up to the worst I've read on here. Maybe it's that I can still do all of these physical activities, I don't know.

But whatever. I'm not backing down from life and I'm not overreaching. Caffeine's been out for a while, stress is practically gone, serenity through the roof nowadays. Briefs have helped. Any accredited quercetin product should help when it arrives. Stretching, breathing. I'm hopeful with PT, but still have my previous questions. I don't have major stress issues, just a high-stress episode a few years back combined with goblets of caffeinated beverages & high activity. I do have a bit of sucked-in-belly syndrome. I can fix this.

I know different methods assist different people, but I don't understand the defeatism that some of us have developed. As before, that might be a pain difference, but this thinking sure hasn't helped me. Complete recovery looks within reach. Why not? There is a way out. Wise-Anderson has a lot to do with it, as do the most avid members of this forum. You have to go at it and keep going and that's it. It's on you.

[webslave]

Don't misinterpret a changed philosophy to life as "defeatism". In some cases, people have changed their occupations so that they are subject to less stress, because they know that genetically they are vulnerable to the effects of stress. That's like avoiding the sun because you burn easily. It's wisdom, not defeatism.

[samgg10]

I don't think I am misinterpreting. I mean, I hope I am. Limiting stress is a given, we all do it, and making a previously-undesired career (or just life) change is the fullest form of that. What bothers me is the disconnect between stunningly high levels of support, knowledge, experience, encouragement, and genuine affability on the one side here, and then a darker half of 'living, but less well' that always lurks and often finds a voice in some post or other by otherwise upbeat posters.

From all I've otherwise read, and certainly in all I feel about my personal state of being, there follows a long-term prognosis of full recovery. Sure, along the way you make lifestyle changes that shape your future, but isn't that all? A cure. Maybe the same rough habits would infinitely drag us down again, but this isn't Tartarus and you're nobody's Sisyphus. You don't push the rock; you walk away. Where's the melancholy in that?

There are things I can't enjoyably do now. I embrace that. They haven't contributed an ounce to my condition, but in my current state I'm too raw to do them. Too much pain, maybe. Too much flux in the healing. But these things, I'm damned well going to do them. Only later.

I don't see that attitude from everyone here and it makes me wonder. Makes me sad.

Hope I'm as wrong as can be.

[webslave]

... a darker half of 'living, but less well' that always lurks and often finds a voice in some post or other by otherwise upbeat posters.

Examples?

Maybe the same rough habits would infinitely drag us down again, but this isn't Tartarus and nobody's Sisyphus. You don't push the rock; you walk away. Where's the melancholy in that?

This is a lifelong condition. Your propensity to develop these symptoms will never go away, just as if you are fair-skinned, you will always be prone to sunburn. But just as the fair-skinned person avoids problems by protecting himself from the sun, so you to can "cure" yourself with the right strategies.

But these things, I'm damned well going to do them. Only later. I don't see that attitude from everyone here and it makes me wonder. Makes me sad.

As I said, examples? If you take your cue from men who have recently arrived here and who are depressed and disconsolate because of the pain and disability, then you are taking your cue from the wrong quarter. I think what you are saying, in a round about way, is "Will I be cured?" The answer is yes.

Hope I'm as wrong as can be.

I think you are, on this issue.

[samgg10]

Not worth dragging in examples, IMHO. Thanks for the quick responses. If you don't see what I'm talking about, it probably isn't there. I regret the distraction, in a good way. Thanks!

Still have my original questions though.

[gmccormack]

Samgg10,

I know that there are posts on here that are not that pleasant and as webslave says these in many cases are new or were new when they wrote it. At my onset I was very negative, when you feel a certain way you pick up on posts or ideas/theories that support that. I was convinced this does not get better and despite all the positive posts I found one back in like 2004 from a guy who said he had practiced the wise/anderson protocol and he was worse and his life is ruins (lost job etc). I fixated on this post and believed it to be my case, it's human nature for a pessimistic person.

However, there is no secret here this is forum for a hideous condition that causes destruction in many lives, just like any other chronic pain ailment. Being depressed, anxious, have suicide ideation are all typical. That said with this condition you can get better and even completely symptom free, if you can keep those negative feelings at bay with or without drugs I can guarantee your pain will not go up and over time your symptoms will subside.