No pain - just constant sensation of needing to urinate

[Jay]

With pelvic floor dysfunction, it is common to flare early in physical therapy. My PT warned me of this. It's especially true if you don't have regular PT plus home stretching etc, as it'll just allow the changes you made to revert. For those who have longstanding or severe cases (like mine), I know that it can take a while to achieve significant progress. My patient opinion is that internal treatment and relaxation are both essential, and that it's best if one can learn those things from a professional.

Getting an MRI is not a bad idea. It probably won't find anything (mine did not, as my pain doc said would be the case), but if you have the cash to burn, it will provide you with some peace of mind.

[samgg10]

How often and for what duration each time did you do the relaxation and what technique did you use? Did you also do internal physical therapy? If so, how often did you do that? And did Alpha Blockers ever do anything for you?

I do the 'paradoxical relaxation' and the conscious, moment-to-moment stuff. I started doing 2-4 PR sessions of 15-40 minutes every day, which is a lot and for me was unsustainable; I tapered off to shorter sessions. It was huge for me at first to 'feel' the relaxation as deeply as possible, and to rest there for a while. But the moment stuff matters too. I learned to catch myself clenching my jaw or pressing hard on my legs during sitting or hunching forward against my abdominals at the computer, etc., and immediately to reposition myself and take a couple belly-breaths. That kind of thing. And it does matter, except you don't realize it until you heal a ways and actually feel a slight relief, sometimes, just from something like 'sitting with good posture' (which at peak symptom level wouldn't make me feel any better).

Internal I've done without obvious success, although it's hard to know. I don't do it regularly now; but if there's a flare and, especially, that tip symptom then I tend to cycle through everything (the sum total of which mostly works). Never tried alpha blockers or any prescription drugs.

If you forget millimeters or centimeters or whatever, the urgency symptom approximately is the prostate. Of course you can't have chronic prostatitis / chronic pelvic pain syndrome and randomly press it and always feel OK afterwards, that's normal. Even deactivating those TPs via internal work is incredibly hard at first (by which I mean flare-risking).

A lot of people feel better when they relax, obviously, and when life is 24/7 relaxing for long periods you can handle all kinds of things that will flare you up next week if you try integrating them into your normal mode of life. I had the same false-spring experience (at Santa Rosa for instance; I went last year); it's hard to reproduce but does happen.

Also I have post-bowel pain, so none of that relief.

Keep going at the relaxation, and if you can't work it out then sure head to Santa Rosa. You'll find confidence there--the hardest hardest part of self-recovery. Also last warning you've got to stop worrying about what you aren't doing, at some point, and redirect that time toward you (relaxing, doing the protocol, thinking of anything but CPPS).

[samgg10]

I suck at internal PT...never could hit the prostate. But here is what confuses me about PT. I have had PT for nearly 3 months while I was in US. I was doing good on the day of PT, but the next day my symptoms would pop right back up again. I think PT helps my symptom to a certain extent, but not sure if it cures me completely. Anyway, only time will tell.

So...same experience here. Never felt anything but worse, never improved week-to-week, etc. This symptom is a nightmare to de-activate this way, and ultimately I decided to ditch the PT. A month or so afterward I began to improve, rapidly. Living in a constant state of flare tricks you into thinking you have a much more severe condition, and an exponentially shittier life, than in reality you actually do.

You don't need PT to heal from this; there are tons of pure-relaxation stories out there, Tim Park's book included (FWIW I have never heard of a pure-PT recovery for this specific symptom). If you are flaring up from PT over long periods of time there is an increasing chance that your PT isn't helping at all. So stop, seriously. Take a month off and spend more time with the relaxation and see how you feel. Better, I'll wager.

[netLynx]

I have had very similar conditions to CMT23. Very little pain (although some days I do get pressure/pain in the lower back or testicles), but my main condition is constant need to urinate and the feeling I need to urinate 24/7. Some days it can be intense.

I have been beside myself with this condition (now 6 months and counting) and have tried everything from Cipro to Physical Therapy (some help but not enough) to hot baths (some help) to acupuncture (little to no help) to homoeopathic remedies (little to no help).

Another urologist just prescribed a month of Cipro and Naproxen (anti-inflammatory) but as I don't have an infection, don't want to take it due to the side effects.

I'm not sure what else to try. Condition seems to worsen on some days. After I ejaculate, it seems to aggravate things. After I had a green drink (fruits and vegetables juicing) also seems to aggravate things.

If anyone has any suggestions, I would love to hear it.

[Burner2k]

Samgg10,
I think my previous post was misunderstood a little. I never had a flare from PT. Its just that on the day of PT, I used to feel fine but the next day the symptoms would go back to what it was before. This was sort of a surprise for me 'cause from what I read, many people would get relief from symptoms for 2-3 days after PT.

Samgg10, was urge to urinate your only symptom or was it along with other symptoms like pain? I kind of agree with Webslave that we may not have true blue CPPS. Trouble is then, not sure what we have.

[samgg10]

I developed additional chronic prostatitis / chronic pelvic pain syndrome symptoms later. None were as ingrained or troublesome as this one. Not sure why you're still anxious for new diagnoses; pretty clear what you have. And, luckily, also clear how to treat it.

[robertpagen]

If one is flaring from PT then they should listen to their body and stop PT. Period

[CMT23]

If one is flaring from PT then they should listen to their body and stop PT. Period

This is the point where I am completely confused and it's really starting to mess with my head. All I want to know is that what I am doing everyday will eventually lead to a resolution of my symptoms. For me this first means eliminating other pathologies via MRI and CT Urogram, which I am still waiting for. If these come back negative, then the last thing that makes sense to me is a pelvic muscle tension issue.

Now you have some people here saying that daily relaxation AND internal physical therapy are essential and that flares must be endured, possibly dozens of times over and over again until things get better. Then you have people saying that the internal PT is not necessary and that relaxation exercises alone can be a cure.

I tried a few light sessions with a prostate massager on the muscles adjacent to he prostate. Each time it left me in extreme and unrelenting discomfort for many days. I'm talking 30mg of Valium knock me out please God type of discomfort. So do I accept that this extreme discomfort is simply something I must endure to get better or do I conclude that this is not the right approach for me?

And who knows, I may be getting ahead of myself for the MRIs may show a growth or other problem that is causing my symptoms. But I am so used to being told by doctors that everything is normal that I am already planning for what the next step is when the tests come back negative.

I will report back when I know more. So far I've been on a month of Quercetin, L Theanine, HTP-5, pollenaid, Nettle extract, magnesium and two times daily relaxation of 20-25 minutes along with a lot of stretching of legs, hips, abs and I don't feel any real difference. So my mind is already wondering if the missing ingredient is internal PT and I really dread the thought.

I will report back when I know more. I am impressed by those who have cured themselves without even trying prescription drugs. I have a few lined up that I will try if tests are negative. Flexeril, xatral, baclofen, and Lyrica.

[CMT23]

NetLynx, can I asked how your symptoms started? For me it was right at the moment if ejaculation. O e moment I'm normal and the next moment I had a sensation of needing to urinate coming from the tip of the penis. Where does your sensation originate from?

And the PT you mentioned, is that internal or external?

It seems that after you rule out all infections and other diseases that tight muscles in the pelvis can cause this. For me, I'm still in the process of ruling those things out. Then I move to relaxation, maybe internal PT, alpha blockers, Lyrica and maybe some other drugs.

[Burner2k]

CMT23,
Based on your signature you have these symptoms for nearly 14 years. However I don't know how bad the intensity was to make you take action now as opposed to sooner! I gotta say, Hats off to you I definitely would have gone crazy...

Who ordered a CT Urogram? Your urologist or neurologist? From what I have read, the procedure is done to evaluate urinary tract. Can it show an inflamed urethra or nerves in the genital & abdominal area? If you don't mind, can you share which areas are you getting the MRI for?

One of my urologists here in India thinks that I have an irritated bladder (per him not IC) and thus its sending false urinary urge signals. He has prescribed me a different med to relax the detrusor muscle. I was on a similar med (Enablex) in early Jan and it worked great for two weeks. After that I guess my body developed tolerance and my symptoms returned. I am gonna wait till I have my MRI done before I start taking the new medication. After a long hot bath (which I do now regularly), my urge goes to 1-2 for 3-4 hours (since the last month). So, definitely hot bath is soothing or relaxing something which is helping me.

[CMT23]

Burner, the sensation has been there to varying degrees always for 15 years now. Yeah, not fun. But there have been times where I could push it out of my head or where my sleep wasn't too badly effected etc. I did pursue many diagnoses and treatments over the years (but never did any of the relaxation stuff or sustained internal PT). But after going to so many doctors who told me they don't know and I am normal, finally I think I decided to just live with it.

Over the last year there have been many times where the intensity of the sensation has increased to the point where I realized that I have to tackle this thing once and for all.

Urologists have been of no use to me apart from helping to rule out various pathologies. I am still waiting to see a Neurologist for the first time. And still waiting on an MRI based on the advice of a chiropractor here (I had long since given up on chiros, but this guy is well known). He is convinced that I have a Neurofibroma on the S2 nerve or nerve pathway OR a sacral plexus lesion. He did many tests which were quite convincing to arrive at this conclusion.

If that comes back negative, then I will see a Neurologist and tell him that I want MRI of lower back, pelvis, and lower abdomen. CT Urogram I want just to rule everything out. If all is normal, then I an accept the tension theory. And in that case I am still confused as to whether I really have to put up with the flares that PT causes.

If you get relief from PT and hot baths, then it seems you are on the right track.

I tried Vesicare and it just made it more difficult to urinate. The sensation didn't go away.

I'll keep you updated. Best of luck!

[Burner2k]

My relief from PT were temporary, like just about a day. Hot baths...yes but relief is again temporary. Interesting theory from your chiro. Well, good luck & keep us posted.

[CMT23]

Temporary relief, but obviously a connection between those muscles and your symptoms. Yes, it's an interesting theory. Now to prove or disprove it. It may be completely wrong, but when you are in constant discomfort and someone with authority tells you that this is very likely to be the cause, well you can't just ignore them. So I will post back as soon as I get my MRIs.

[CMT23]

Well, got the results of MRI on lower back focused on S2.

Your MRI results came back today with no sign of any mass or lesion.

The problem is that such lesions are extremely difficult to locate even when using an MRI & even if one was located, there can be complications with the surgical removal of such a lesion.

I am unsure of where or whom to send you to following the complete examination that I have conducted. My only advice from here would be contact a neurologist in the UK who has an interest in neurofibroma & see if they can offer any further advice.

Please call me tomorrow after 9am so we discuss this further.

[webslave]

Your not seriously taking medical advice about tumors from a chiropractor, are you?

My advice: never visit or talk to a chiropractor again. This one is wasting your money and sending you on a wild goose chase.