No pain - just constant sensation of needing to urinate

[Mike Kavo]

Mike - can you comment on what kind of healthy vs. crappy diet you are referring to?

I have tried a few diets and it is too much to discuss in detail here, although it is amazing the differences a diet can make, over the mid to long term. It takes I would say a minimum of 3 months to really feel it.

I refer to a crappy diet being the standard definition in the vernacular. That is people who eat daily too much processed and fast foods (over balanced with sugar, corn syrup, grains, very carb rich and with alcohol) eat a crappy diet that simply lacks acceptable nutrition. This is pretty much standard nutritional science even if crappy is a bit of a throw away term to describe it.

In my experience a bad diet leaves you too weak to exercise and encourages issues you do not need to be dealing with to go wrong with you (allergies is the classic hidden health issue). You will be at your best if you eat best. Psychologically it is hard though to avoid junk food.

I try to avoid all processed foods, drink only water, eat zero treats (my only treat is a a small portion of fruit), I avoid all sodas (including diet), I eat as low down on the carbs as I can (example when people eat potato or bread with meat - I simply eat salad or steamed vegetables with meat), if I do eat carbs it is a "tiny" portion, I never eat deep fried food only grilled etc, the list is endless and I can not type it all out here - common sense eating all out there to study little me cannot teach all that on here.

To do this you need to learn to cook well, invest is a good kitchen and free up time (yes you will need to work less). I am lucky my wife is eastern European so I have been able to pick up an older fresher way of eating devoid of Americanization as much as possible.

I do not really think crappy eating and healthy eating need me to explain them though, as the thinking is well established. But if you wish to know my thinking on this, here it is.

Bottom line if I feel better from eating well. I seem to be able to control my overall health better along with my CPPS. I know guys with chronic prostatitis / chronic pelvic pain syndrome who smoke, drink and visit restaurants and manage but my experience is I manage better without those in my life.

Hope this helps; sorry it is a bit verbose.

[CMT23]

Then I get up and boom - the sensation sets in at a level that is much more severe.

Once you start activating the nerves, cross talk does the rest. Google nerve cross talk.

So this means that I still have nerves that are damaged/not yet recovered from nearly 2 decades of an environment conducive to CPPS? And once those nerves heal, they will stop affecting surrounding nerves?

[webslave]

Yes. Exactly. Part of it is also allodynia, which will only subside if not constantly goosed. That's why the whole aim of treatment is to calm nervous activity in the region down.

(This is a general comment about chronic prostatitis / chronic pelvic pain syndrome — your situation may be different).

[CMT23]

Okay thanks for this. I experienced the same phenomenon today. Sitting at lunch and then having a small coffee, feeling somewhat relaxed and not moving and suddenly I notice my symptoms are like 1 out of 10 even though I have taken in lots of water, then coffee, and then some tea (clearly I don't have IC). They stayed this way until I stood up to go back to the office and right away the intensity of the sensation increased to 5 or 6 out of 10 (which is still a good day for me).

This standing and moving putting an end to a reduction in my symptoms is incidentally what caused a chiropractor here to declare that I have a tiny neurofibroma on my spine (MRI showed nothing) and therefore I should 'stop looking' and learn to live with it. Looking forward to the day I can give him a call and let him know how irresponsible his advice was.

[GARYS]

I have several doctors I would love to talk to!! My personal favorite was at a top medical school I had the urologist who was probably late twenties and a intern and had me drop my pants just to tell me to try a different soap. I probably waited months for that appointment. Got to love em!!!

[CMT23]

It was so discouraging when I was younger, especially the fact that it seemed that doctors were both unaware as to what was wrong and at the same time completely uninterested in finding out. I would think that as specialists in the field of Urology, that they would be fascinated by unexplained discomfort/pain. But most were satisfied to assure me that nothing was wrong and to stop thinking about it!

[admin: Wolfcub's response is split to a new thread here: viewtopic.php?f=37&t=7993 ]

[Burner2k]

CMT23,
Have you tried any OAB meds apart from alpha blockers? I found an interesting paper on OAB (will post the link later) which talks about our symptom i.e. constant urge to urinate, being part of OAB. I understand that the symptoms of folks with urinary issues here on this board do not match with conventional OAB symptoms (sudden urge to void, incontinence etc.), but I think trying some newer OAB meds is worth a shot. I also watched a youtube video on OAB which says that symptoms flare up in damp or cold weather as bladder contracts in such conditions. I had tried a couple of OAB meds around a couple of years ago, but not for extended duration (> 15 days). I am determined to give OAB meds which calm bladder detrusor muscle, another shot at least for 30-45 days before I make a judgement call. Possible serious side effects which could lead to termination of drug is difficulty in passing urine :)

Just wanted to hear your thoughts. Curiously, last year i.e. Sept 2011 - March 2011, my symptoms had abated considerably. I remember contracting viral fever with bad cold in mid Sept 2011 and I had to go on a course of antibiotics & antihistamines. After I finished the course, I absolutely had no urinary issues for the above said period. I dunno if anti-histamines had an effect.

Do anti-histamines address mast cells?

[webslave]

Do anti-histamines address mast cells?

Yes, they address some of the products of mast cell degranulation.

Quercetin is one of those substances that helps to stop mast cells degranulating in the first place.

[Burner2k]

This is the paper I found : Approach to Overactive Bladder (Google Docs)

And here is the youtube video:

Webslave, would love to hear your thoughts on the above as well.

[webslave]

That 2006 paper concludes

There is no cure for OAB at the moment and the treatment aims at minimising the symptoms. The first line treatment includes life style interventions, bladder training, pelvic exercises, and pharmacotherapy. The mainstay of drug therapy is an antimuscarinic agent. The two best-studied agents are oxybutynin and tolterodine, and both have well-proven efficacy. Promising future therapies include the development of more specific antimuscarinic agents and new drug delivery systems.

Things change all the time in this field, so look for the latest info, for instance viewtopic.php?f=39&t=8001

[Burner2k]

Webslave, thanks for that article a lot. I guess I can start with meds and hopefully will get this under control. I would love to hear OAB med experiences from other folks here.

Thx

[CMT23]

Hi Burner,

Tried Vesicare for a few weeks and had all the same discomfort just now with extreme difficulty in starting my urine stream. I am not sure if there are others I should try. That experience kind of turned me off to these meds. I'm up to 50mg Atarax a night, with no amazing results. It's been a couple weeks and I worked up to this dose. Any accredited quercetin product and Qrol didn't do anything for me. Anyway let me know if there is an OAB med you think is worth trying.

[Burner2k]

I plan to start this drug called Terol LA-2 (Tolterdoine) as soon as I manage to get a prescription. An urologist way back suspected irritation to bladder muscles and thus sending out false signals.

I will keep you posted on the outcome.

[CMT23]

I may try this too, although I don't know if I truly have an overactive bladder or if I just have similar symptoms because of trigger points/muscle tension etc. Vesicare certainly limited frequency but in between trips to the bathroom I still felt an urgent need to urinate. It's that symptom that bothers be above all others.

I wonder why we don't read more about PTNS for overactive bladder (Percutaneous tibial nerve stimulation). It seems to be pretty safe and also seems to have helped a lot of people. I'm currently looking into whether it is available here. But again, I don't even know if I truly have an overactive bladder, especially since I often sleep 9 hours straight without getting up to urinate and it seems one of the things they look for in making a diagnosis is waking up 2 times per night.

Anyway, this has all been one big experiment so maybe I will try these things at some point.

Currently I am doing the protocol and taking:

Imipramine 100mg at night
Deanxit 2x day (can't remember dosage)
Flomax 1x day (one month already)
Atarax 50mg at night
Ranitidine 150mg at night
Baclofen 10mg 3x day

And after a month on some of these meds and 4 or 5 months on others, I can't really say that I feel any amazing relief. Perhaps it takes the edge off slightly, but only very slightly. And the regime hasn't helped with frequency and urgency at all. So I don't know if I continue on with these and give them more time or throw them out and try something else.

[Burner2k]

Dude, are you taking all those meds daily? Or did u try those meds at various times at the dosage mentioned above? I can attest that Baclofen 10mg 1x day helped me initially a lot. A few months down the line, Baclofen (same dosage) + hot baths would do the trick. Like I mentioned in one of my posts above, a course of anti-biotics + anti-histamines really abated my symptoms; enough to make me get off all kinds of meds. For the last month, symptoms are back (dunno what the trigger was) and although they are not as bad as when it started, its still depressing. I have been celibate now for more than 9 weeks...so definitely that was not the trigger. I drink coffee once in two weeks and keep spicy levels in food to mild. I gave up liquor back in late 2009 and haven't had a drop since then. I exercise (brisk walk) almost daily and do stretching of quads, calves, hams & lower abdomen after exercise. I am truly confused as what triggers a flare up. May be its OAB...My PT here (who is good PT for other conditions other than this ) thinks I need to strengthen my core. Should I give that a shot as well?