No pain - just constant sensation of needing to urinate

[pizzamanguy]

I still think you're in the foothills of CPPS.

I'm curious what exactly you mean by this. Are you implying that it's likely to progress, or that my condition is probably within the realm of CPPS?

[webslave]

Yes, it's possible, but let's wait for the uro's opinion.

[pizzamanguy]

Well, I hope you mean to say

Yes

to me possibly being a chronic prostatitis / chronic pelvic pain syndrome case and not that it is likely to progress to something worse. I recall last month you said if I maintain a decent protocol (trying to control stress, phytotherapy [Quercetin], stretches, diet, etc) that it almost certainly won't get worse. I'd like to believe that's still sound advice.
I still have some anxiety regarding my condition - but it ranges from being moderately improved to much better at this point. I have yet to feel as literally *panicked* as I did early on. It was so bad I was actually pacing around my apartment and shaking. I have become less obsessed with online research and the like as well. I pretty much only use this site now - as no new information was being learned.

My urinary symptoms (and/or my ability to cope with them) have plateaued to a better place as well. But, as you understand- no doubt, it's always hard to tell. Incidentally, just last night I felt a twinge of pain in the tip of my penis but it was fleeting (15-20 minutes tops) and if it's still there now it's not really noticeable...so it's another one of those "perhaps it's just the human body being weird" type of scenarios. However, when this began, the tip stinging was more intense and closer to 50/50 in terms of how often it was present. It was never worse than a minor annoyance/irritation, though.

Really not expecting any sort of breakthrough with the uro, but since that's more than a month from now I'm going to continue to approach it as a neuromuscular condition. Anxiety will likely be difficult to wrangle right now since this is the last 2 weeks of my semester, but I suspect a huge drop in stress come December 15 to January 10th when I go home for ~ a month to visit family. I'll still have some important deadlines but I'll be able to work on things leisurely at home.

Hoping for some improvements to occur during then.

Anything else I should be doing in the meantime? CBT is still in the works but not able to happen until next month as well.

[webslave]

See if symptoms change (IOW improve) when you're in vacation mode. That's a 'tell' if it occurs, meaning you are in control of it and must devote more time to instilling calmness into your life. Easier said than done.

Read Full Catastrophe Living by Zinn.

[pizzamanguy]

Thank you, webslave.
I think I've already experienced somewhat of a "tell" - which was how I generally had better days while my mother was visiting me. The day I dropped her off at the airport I was feeling better (compared to my first few weeks). Shortly after I arrived back to my lonely apartment, realizing I had to face my life and my life's problems alone, it felt like the symptom intensity began to creep back.
There's always a chance that this was a coincidence - and it can also be argued that any symptom processed by the brain (pain, etc) regardless of its etiology can be affected by mood/stress. That being said, if there are significant changes during my vacation, and the Uro finds nothing, then that's probably all I need to know to decide that this is almost entirely psychological.

Again, thanks.

When it comes to discussing my condition I'll try to stick to my own thread from here on out.

[CMT23]

I've tried four of the overactive bladder meds posted above and they basically just make it more difficult to urinate. The constant sensation of needing to urinate was never reduced. But when it came time to go, I was standing there like an 80-year old man waiting for the urine to dribble out.

Having said that, it doesn't at all mean that they won't work for you.

[Joe02324]

Following this thread as I have similar symptoms (although I do get pain in pelvis/testicular region)- but my chief complaint is similar to the thread discussion - urge to urinate and constant sensation at tip. Just curious if either of you (CMT23/ Pizzamanguy) were on medications before this happened or did you start (CMT23) afterward? The reason I mention it is because I was on benzos/ sleeping pills for quite some time when the sx started happening and I've been to other benzo forums where benzo users have experienced bladder/ urination issues. I've always wondered if my sx were a result of the pills that once suppressed my nervous sx - and now my nervous system is in a heightened state... or it could be just chronic prostatitis / chronic pelvic pain syndrome without the pill.. I've since quit taking benzos/ sleep meds.. but still can't figure out what exactly caused my sx. No amount of medication seems to help - also tried the overactive bladder meds with no luck. Keep me posted if you guys figure anything out.

[CMT23]

Hi Joe. Sorry you are dealing with this too. I has never taken any kind of medications when this started.

I was only 17 and all of my back muscles and hips too were constantly tight and just extremely uncomfortable. I was waiting tables and kind of chalked it up to that. Looking back, it should have been clear that something was seriously wrong with my muscles.

Anyway, as long as I've alive, I have to keep looking for a solution. Right now my goal is to get my hips and back feeling totally at ease and comfortable all the time. My theory is that as these muscles all feed into the pelvic floor, their tightness causes the dysfunction that leads to symptoms.

To that end I am in week 3 of the online pelvic pain course at resistancestretching.com. The stretches are all way more difficult than they should be for the average person. Many of them cause muscle fasciculation (uncontrolled twitching) of the muscles leading into the penis. That also has been happening with static stretching for quite some time and also when I am exhausted and lie down relaxed at the end of the day. That seems to be like a strong clue that there is a connection to the muscles. I don't believe it's at all normal to have an uncontrollable quivering penis as one stretches certain leg muscles for example.

Right now, after 3 weeks, my muscles feel longer. I can stand up straighter. I can lean back from my waist where before I was just stuck vertical. But my urinary symptoms (chiefly constant urge of needing to go) have flared up quite a bit. I used to get a number of hours in the morning where the symptoms were more quiet, but now it seems that the intensity of the symptoms have really gone up a few notches and the sensation remains from morning til night. The guys behind the program advise that this flare up is not entirely unusual. I will report back.

I've been through so many pharmaceuticals, herbs, alternative healing modalities, psychological healing modalities, and just plain bizarre stuff, that when I stand back now, I have to believe the issue is caused by dysfunctional pelvic floor muscles that entered that state when all the muscles leading in became overly tight and dysfunctional themselves. I did the 1 year+ with the Wise/Anderson wand and relaxation without any remarkable results, although I felt better while doing the relaxation techniques. I'm now partial to the idea that the muscles leading to the pelvic floor are the culprits and that it's not enough to just stretch the pelvic floor internally and quiet the nervous system (although that could indeed be a component of fully healing). It's all one giant experiment and I commend everyone who sticks with it. Eventually there will be a clear cause and solution.

[ChgoGuy]

I've tried four of the overactive bladder meds posted above and they basically just make it more difficult to urinate. The constant sensation of needing to urinate was never reduced. But when it came time to go, I was standing there like an 80-year old man waiting for the urine to dribble out.

Sounds about what exactly I have been going through. I've been doubting the use of Myrbetriq lately for calming down the urgency. My biggest fear is that if I stop taking it for a period of time, will I have to fight to get it back? My insurance company has given me a hard time over and over again about paying for it. I've titrated down to half, but I've experimented like this before. Urge is the same, but maybe instead of standing at the toilet like an 80 yr old man, I may improve to a 70 yr old. Not sure that's the difference I am looking for.

[CMT23]

I'm not a great person to give advice as nothing I have done has 'worked'. It's the same situation for 22 years. Never feel normal. Better with regular exercise and sleep. Better after hot bath and lying down. Worse with reduced sleep. Worse after sex. Worse with stress.

I don't want to dampen anyone's drive here as we're all unique and the symptoms are not identical, but literally nothing has worked. Proponents of the different modalities I have tried will say 'If only I continued on for 1 more month or 1 more year etc. etc. I would have seen relief'. And it's impossible to disprove them of course. Also doesn't mean they are right.

At the end of the day there is some cause and some solution. Just a matter of staying tenacious and not giving up.

[ChgoGuy]

...literally nothing has worked.

When it comes to medication, I have been in the same boat. As I like to say, I have been fired as a patient by Urologists I have seen (and not the other way around), because the medications were not working and almost everyone had an adverse effect on me, or made something else worse. They didn't like that. The first Urologist I saw for this would have preferred if I just STFU and did what he said even though it didn't work. Because of him and his ideas I ended up seeing other specialists for things that started happening after taking meds for this. So since I wasn't having much faith in what he was telling me, and he didn't like me asking questions about what was going on in my own body, he got rid of me as a patient. I'm okay with that because he did nothing for me anyway.

[geeza]

To that end I am in week 3 of the online pelvic pain course at resistancestretching.com. The stretches are all way more difficult than they should be for the average person.

Hi how’s the online course going?

[CMT23]

It did wonders for by back and hip discomfort and nothing noticeable for feeling like I need to urinate all the time unfortunately.

[geeza]

Ok thanks. When you say you have the feeling to urinate, do you actually urinate or is it just the sensation?

[CMT23]

It's a sensation in the tip of the penis, which can be replicated and exaggerated exactly by pushing on the muscles high up adjacent to the prostate (finger/wand up the bum). So basically the sensation is always there. I wait until it's extreme before I urinate. The stream is weak and after I'm done the sensation of needing to urinate is still there. The severity of the sensation seems to depend on a lot of different things - lack of sleep seems to cause the most trouble the next day as does more than a couple alcoholic drinks.

Basically the stretching routine like everything I have done could have been 'the solution'. If I talk to the people behind all the different treatments I have tried, they will usually say if I had given it another few months or another year or whatever, I would have seen results. I can't prove they are wrong of course. But when I give something 6 - 12 months+ and don't see any real change, for me I tend to draw a conclusion that it's not going to be the answer.