No pain - just constant sensation of needing to urinate

[CMT23]

Am I the only one here who has zero pain, but just a constant sensation in the tip of the penis that I can best describe as a feeling of needing to urinate? (Sometimes light and sometimes extremely intense).

I have been doing relaxation twice a day for almost two weeks now. (I know it's nothing in the scheme of things, but I'm happy I have stuck with it. Hopefully the fidgeting and thoughts subside over time).

Usually about 20-25 minutes each time. There are times, especially after a long day, hot shower, and then lying down, that I do the relaxation and the sensation goes down to almost nothing. What a great feeling! But movement brings the sensation back, whether it be rolling to one side, sitting up, or standing up. And lying back down doesn't bring relief. It's something about being extremely relaxed that helps me.

Is anyone else out there experiencing something similar? I guess the questions are:

1. Can you have trigger points and chronically tense pelvic floor muscles without experiencing pain?
2. Can you have trigger points and chronically tense pelvic floor muscles that cause only one major symptom - a constant sensation of needing to urinate felt in the tip of the penis?

[CMT23]

I have to say I am left a little confused over the fact that it appears that I am the only one here with these symptoms.

[webslave]

You don't really have CP/CPPS (according to the medical definition, in which pain is a key feature). That's why you're getting no responses.

[CMT23]

Yes it would seem that my symptoms don't fit in with what other people are experiencing here. Yet,many times I feel better after hot baths, lying down, Valium, relaxation etc. So it seems that chronic pelvic muscle tension / nervous system arousal could play a role in my case, correct?

And oh yeah, you can press the prostate and connecting muscles and duplicate my symptoms. Surely that means that there is an issue with these muscles?

[webslave]

Well, your symptoms are definitely neurological, so of course there will be commonalities with a syndrome like ours. I think you should try to take from our experience that which is useful to you — and that could be quite a lot.

[CMT23]

Thanks webslave. There is a lot of overlap with what I am experiencing and what people here are experiencing. My symptoms behave in a similar manner. Maybe the next step is to see a Neurologist as that is something I have never done before. The one time I inquired, I was told that this isn't a neurological condition so no need to make an appointment!

[Burner2k]

CMT23,
Well, you are not alone on this board with this type of symptoms. I have them too...and probably Webslave is right that we may not have true CP/CPPS, even though there might be some overlap of symptoms.

About a visit to neurologist, I had been to what is considered as the pioneer Neurological & Mental health sciences institute in India for consultation regarding my problem. The answer I got was, all my clinical symptoms regarding neurological problems appear normal including in the penis since I am able to achieve erection & ejaculation. Basically, I was told that unless the symptoms are serious usually there are no neurological problems. Obviously that is not what I wanted to hear. She said stress and anxiety can produce certain mysterious symptoms. She has referred me to Cognitive Behaviour Therapy for next few weeks. I am going to give it a shot since its more or less free ($.25/session...LOL). I am on Lyrica for the past 2 weeks and my improvements have been minimal.

I have a follow up appointment with another eminent neurologist on May 16. He was the one in fact who put me on Lyrica (generic) and anti-oxidant supplement till May 16 (8 weeks). If my issue doesn't improve or get resolved, he wants to do a lower back MRI to see if I have any disorders there. He thinks that whatever I am experiencing might be related to lower back.

For me too muscle relaxants & hot bath do wonders. I have sought PT for this from many folks including Tim Sawyer. I always used to feel better on the day of PT, but after being on Baclofen, I am getting extended relief. As in your case, I have TrPs near the prostate. Pressing them recreates the urgency sensation although it is a little different from what I experience otherwise. What I wonder is, if the same spots are pressed for non-CPPS folks, does it create urgency sensation for them as well?! Anyways, I have been on this board for just under a year. And I know two other folks who have had the same type of symptoms as us, who have been helped by Internal Trigger point therapy. One of them attended the clinic in Santa Rosa and the other one got treated under an eminent PT in NY region.

My suggestion would be to go ahead and consult a neurologist if you can afford. May be the folks in Thailand can come up with an explanation and a path which helps in long run. Unless their treatment includes some type of surgical procedure, there is no harm in trying.

[CMT23]

Burner. Obviously sorry you are having to deal with a similar thing, but I guess it's good to know that I am not some freak in 7 billion people or whatever we are up to now.

I have never tried Baclofen. I will put it on the list of things to try. What dose do you take? Neurontin did nothing for me and I plan on trying Lyrica soon.

How did your symptoms start? For me it was during ejaculation. One moment fine, he next moment I knew something was wrong.

It's interesting that you mention a scan of your lower back. I had given up on chiropractors for this, but recently went to one here on the advice of a friend. After a few weeks of tests, he is convinced that I have something aggravating the nerve at S2. The next step is an MRI focused specifically on that area. I am waiting for my appointment now and hope to have it done within the next 2 weeks. Wouldn't it be something if after 15 years they find something very obvious like a tumor or other growth? I'll report back when I get the results. I have never had an MRI for this as all the doctors I saw basically did the usual tests, told me there is nothing wrong with me, and 'good luck'.

I also saw Tim Sawyer about 8 years ago maybe for 6-10 appointments. I don't recall if it really helped, but I do recall that I didn't do all the stretches he told me I needed to do - or the daily relaxation. I guess at that time it wasn't bothering me as much as it is lately and I could control it with Valium and hot baths.

I would imagine that pressing on the muscles around the prostate would refer similar sensations in 'normal' people too. But a few months ago I had a go with a prostate massager. After 30 seconds of pressing on either side of the prostate and probably accidentally the prostate itself, my symptoms flared up to the extreme level for 3-4 days. I don't think that is normal. I also don't really know what it means. But I would guess that these muscles are not functioning normally.

I also get relief from lying still in the sun, which is a vote for a tension disorder. And if I get even a couple hours less sleep than normal, within 24 hours, I will usually experience an intense flare up. It's as if I have no reserves. If my body and mind are not perfectly rested, the intensity of the symptoms will increase.

Unlike a lot of people on this board, I look forward to bowel movements! I can be in pretty serious discomfort, have a bowel movement, jump in a hot bath, and then lie down still and the sensation reduces enormously. My guess is that muscles involved in BM have to relax/stretch and that somehow takes pressure off whatever is the root cause of this.

Anyway, keep me updated. I'll do the same. My plan is to first get the MRI of S2, also CT Urogram and MRI of lower abdomen while I am at it. If all that is 'normal', then I will try 3 or 4 medications that look like they could help (Lyrica, Baclofen, Nortriptyline, and maybe suffer through the side effects of Uroxatral again to see if I can adjust after a few days - maybe it can relax all the muscles in question and give relief). If that fails, then it's to Santa Rosa in July or so. In the meantime, I am doing daily relaxation, stretching, and exercise. Also taking L-Theanine, HTP-5, Quercetin, Pollenaid, Stinging Nettle, Magnesium, B-Complex, B-12, Spirulina, FlaxSeed Oil. (A lot I know, but worth a shot. Three weeks already without any major improvement, although there have been times on some days where I have felt pretty good).

I'll report back when I have more info. Best of luck!

[CMT23]

And to add another twist to this, just now, as with many times before I was feeling pretty bad. 48 hours already in a flare. I went to see a friend and had one small glass of red wine. While sittin still there for an hour or so, my symptoms went from 7 out of 10 to 2 out of 10. Once I got up and walked around, the sensation came back. Another vote for a tension disorder of some kind I suppose.

[samgg10]

Hmmm. Webslave's post kind of puts me off, because I'd say: yes, that's CPPS, sounds like me a couple years ago. But I haven't read any other posts from you, so who knows.

The TPs are basically on the prostate for this, and I've had mixed luck treating them myself. If you don't release something, you will feel worse. With relaxation though one year later I feel 3/4 cured of this horrible symptom (and I don't consider myself particularly brilliant at relaxation either). It's the only thing that's helped.

My best advice is to ignore 100% of the extraneous bullshit, including that MRI, and to give all of your time over to relaxation--this includes killing whatever daily thoughts about miracle cures & surgeries & related conditions & genius doctors you ought to see, etc., that you currently have. I'd say even stay off these forums until you feel sure you can handle it.

Relaxation works, really. You have to take it on faith for a long time though. This is a monster obstactle for an in-pain & anxious & neurotic person to navigate, which is why said faith is, I'm certain now, the single trickiest component of chronic prostatitis / chronic pelvic pain syndrome recovery. Because you can't easily convince yourself it's working until you're quite far along. This makes sense too, as reducing your average pain from say a 6 to a 4.5 does not eliminate the flares & lesser rollercoasters that try damnably hard to shake your faith. But when average pain drops to 2, or 1...well, you'll see.

[Burner2k]

Sammgg10,
I kind of have more or less the same symptoms as CMT23 (see my earlier posting on this thread), I was just wondering if you have the same symptoms as we do? For some reason, we can't help feel that our symptoms are bit more unique than what is generally seen on this forum. The fact that for both of us, this started soon after ejaculation and the urge is at the penis tip. For me, there is an additional component that if I press the head of the penis at a certain place it recreates the urge sensation (when its not there). Thus I am leaning towards an injury hypothesis. Unfortunately doctors doesn't seem to agree with me :)

I agree with you that relaxation definitely helps, especially may be for us since ours might be more of a neurological component. But I feel we ought to investigate and rule out any potential physical causes which might be detected. At least for me MRI and stuff are not that expensive here ($150-$200)...so probably worth while in investigating.

CMT23, the interesting thing is, our condition its not as rare as we think. Just for giggles, do a google search on "constant urge to urinate" and you will stumble on various results.

More later...
-B

[charles]

These are pretty much also the symptoms that I've had.

Physical Therapy, daily stretching, and trigger point release all helped relieve my symptoms. I was symptom free for 7 months after doing those things regularly. After my symptoms went away, though, I got lazy and stopped doing them daily, and now my symptoms have come back although not as strong. So I'm going to start doing stretching and TP release again. Hopefully I won't need to see a PT but it's always an option.

[samgg10]

Burner, I might be in that boat; can't say exactly. For me it started with frequency, not ejaculation. It later ramped up to a more-or-less constant urgency focused at the penis-tip (although there was/is always some bladder-type sensation of discomfort also, the tip thing was for me a separate and much more efficiently soul-sucking symptom). Post-ejaculatory pain, definitely, and bad enough that total abstinence was (and to a certain extent still is) the only reasonable plan. Some post-bowel pain as well, and a brief stint of suprapubic sharpness when the discomfort peaked ~ late 2009. I don't remember anything special about the pressing you describe, except that I used to voluntarily do this as a stress-reaction to tremendous pain and never felt any better for doing it.

You may well have developed the same penis-tip symptom by an alternate route, or we may have both developed this thing the same way but at separate points in our chronic prostatitis / chronic pelvic pain syndrome trajectories. Obviously I was predisposed (given the frequency) to develop this; if it happened out-of-the-blue for you, and it's your only symptom, well I'd say count yourself fortunate that you only annoyed that one particular region. Definitely I'd quit worrying about injury, etc., because it sounds like the same symptom on the same muscle and I can't see how anyone could settle into improving while ferrying themselves back & forth from doctor to doctor and hearing the most incredible nonsense from specialists (who will not allow you to leave without asserting some kind of diagnosis, however rare, that exists within their specialist's medical purview).

BTW: I don't have this symptom any longer -- it's cured. Once every few weeks maybe I'll feel it, but any kind of treatment will reliably vanish it. Once you're healed a fair bit you'll discover that the physical & mental therapies work exponentially better in flare situations (because your muscle tissue is by-default looser and thus resets to a much looser 'rest' condition).

Cheers.

[CMT23]

Samgg10, it's great to hear that you have been able to get over this condition. 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?

Yes, when you press on the prostate and right next to the prostate, it EXACTLY duplicates my symptoms - just takes the discomfort up a couple notches. A few months back I got a prostate massager and had a go myself. It caused an instant big time flare and remained that way for 3 or 4 days. For this reason, I am thinking I better go to Santa Rosa and get proper instructions before I try this again.

In my case, my gut instinct is that it is a tension issue. If you haven't read my other posts, then I'll mention again that three months after it all started, I had a cystoscopy and a couple prostate exams and was told I was normal. I may have been given some antibiotics and a week or two supply of an antidepressant. And I think I forced myself to take a 3 or 4 week break from ejaculation since that is the moment when it all started so I figured there must be a connection.

At any rate, I was headed to Hawaii for the Summer and somehow I just sort of forgot about it and the sensation went away completely for the whole time I was there. Even once I began ejaculating again daily, there was zero discomfort. I spent a lot of my time there in the sun, snorkeling and swimming. It wasn't without stress, but overall, I was happy to be there. Within a month or two of returning home to school and family, the sensation came back again and hasn't let up since even though I have been in all kinds of relaxing situations over the past 15 years.

There have been time periods since when it has been mildly annoying and others where it is just intense and unbearable discomfort. When I am especially well rested and in a routine of exercise I tend to feel better. One of the biggest clues to me is that after a bowel movement I get a minute or two of almost complete relief as long as I immediately lie down. Last night I had to leave a social function because I was in such intense discomfort. I came home and after a bowel movement I lied down and I felt almost no discomfort for a few minutes. My theory is that the muscles are briefly stretched or opened up. Did you experience this too?

Another clue, I can often lie in the sun by the pool for the time that my mind just kind of relaxes and lets go, I sometimes get very significant relief.

I will continue down the relaxation route, but I want to get the MRIs for my own peace of mind. If they tell me that as far as they can see, I am 'normal' then I will more easily be able to pursue the relaxation method without second guessing and wondering if some other pathology has been missed.

Burner2k, yes, at least now with the Internet we can see that we are not alone. For the first few years of this condition, I really thought I was the only one in the Universe who was experiencing this!

Charles, great to hear that you also had success. Can you share a little more as to how often you did the PT (internal or external?) and did you do the relaxation too? If so, for what duration each time?

[Burner2k]

Great post guys. Thanks a lot for pitching in with your opinions. Well, I definitely cannot travel to Santa Rosa as of now. So I gotta do with local PT. I guess its time I paid him another visit...

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.

Charles, I have done stretches before and some of them actually flare me up. So I am really confused about the protocol that a lot of people follow here.

Like CMT23 said, I might get MRI done just to rule out any pathological issues. I am also starting a Cognitive Behavior Therapy to learn how to deal with this.

Webslave, you have probably more experience here than anyone else on chronic prostatitis / chronic pelvic pain syndrome related issues and you think our problem is neurological. Can you take a guess as what & where our issues might be so that we can "probe" doctors to look in it as well?

-B