No pain - just constant sensation of needing to urinate

[CMT23]

At the end of the day I probably need a complete lifestyle change and mental adjustment change

True for many of the more intransigent, difficult cases. But as you say, very difficult to achieve (in my case, my dear wife was able to shoulder much of the bread-winning burden).

I'm starting to seriously wonder if I almost need to become a new person to get over this. I've always been very driven and focused on goals, especially concerning money. Also very aware of what other people think of me (or at least what I think they think). Also a tendency to worry. Maybe I need to drop it all and wander around India for the next few years. Or maybe just become like The Dude in The Big Lebowski and drop all goals and motivation :)

Even after 20 years I still don't know for sure if this is all some kind of anxiety driven mental condition or an actual physical condition or a combination of both. I do know that the symptoms are worse immediately after ejaculation and that the muscles of the pelvic floor quiver like crazy when my body is in certain positions. I also know that stress, lack of rest, and anxiety make things worse. I guess that's an argument for a combination of both.

I have been doing a Dynamic Contraction Technique / Nutritious movement stretching routine 4-5 times a week for 4 or 5 months. I have also been doing weekly craniosacral and Emotional Freedom Technique sessions. My hips and back feel much better, but urinary symptoms are more or less the same. Maybe I need to add the Dr. Wise wand in again. I have had phases of being serious about meditation and then just losing interest. I suppose in general symptoms have been better when I have stuck with the meditation (usually the Headspace app 20-30 minutes random selection).

Can't remember if I posted here before. This may help others. For sleep, I used to wait until things were real bad and then reach for various Benzos. A doc here finally told me to stop that as it will just bounce me around (mood wise) and will lead to addiction. In his point of view I am better off taking a low dose Benzo (Clonazepam 1mg) combined with Remeron 15mg and Nortriptyline 10mg each and every night. He refers to this as 'treatment'. It's pretty clear that I will be dependent on this formula for the rest of my life without a long weaning off program, but that's ok with me for now as I sleep 8-9 hours every night and I no longer have the anxiety during the day that I may be up in unimaginable discomfort all night. I was getting to the point where even 4mg Clonazepam would only let me sleep for 3-4 hours. But after taking a 3 month break and then starting this new protocol, at least I have the peace of mind that I will sleep through the night.

If anyone has success with anything, please do post.

[Raymond0420]

Well, I thought I was the only one with this odd problem. I had it worse I believe. In 2015, I suddenly got this CONSTANT URGE to urinate. It would not go away. 24/7. It was driving me crazy. I went to my urologist. He did a scope and flow test. All normal. Next day, symptoms went away and what a relief. June 1, 2017, I discovered that I could not urinate very well but no urge to urinate all of the time. I was physically fit with no problems. I have had bacterial prostatitis before so I knew the game. Called urologist and did Cipro for a month but no symptoms of the constant urge to urinate yet. After drugs were gone, I got an uncontrolled CONSTANT feeling that I had to urinate. It seemed like every 10 minutes I had to go. Then, I started to suffer from sleep deprivation and exhaustion which led to anxiety and panic attacks which I never had before. They just made things worse. Out of physical and emotional desperation, I went to the emergency room twice that week. All testing was normal. Still had the constant urge to urinate however. Went to a urological nurse at hospital out of desperation. She gave me some bladder relaxation pills. These extreme symptoms lasted for about 8 days. Then, one day, symptoms improved about 70%. I thought I was on the down side but I still have that urge to urinate about 30% of the time now. I saw my old urologist and got the same scope, flow and urine tests as in 2015. All good. After the tests were done, the urologist basically said he did not know what was causing my problems and told me to go somewhere else for treatment. He gave me some more pills which I cannot stomach. He is sending my records to another urological office at a large teaching hospital. He basically told me to take a long walk on a short pier after being with him for 20 years as my urologist. As this website said in one of its articles, Urologists are surgeons and want to make money that way. Anybody with a non standard urological problem is basically doomed to their fate. There is no money in seeing or treating you for these odd urological problems. If it is not an ordinary problem, you will have a hard time getting it dealt with. So, now my symptoms are still the same but less severe. I still get up around 6-8 times a night to urinate. I need sleeping pills now to get any sleep. I have slight pain in the tip of penis and rectum once in a while but very slight. The inside of my penis feels irritated and hot along with my urethra. So, I may have a mild form or chronic prostatitis / chronic pelvic pain syndrome or non bacterial prostatitis but not sure. There is no bacteria in my urine. I feel like my bladder is pressing down on my urethra somewhat that may be causing the sensation to urinate. All CAT Scans, ultrasounds, scope and flow test show only mild obstruction due to mild BPH. CAT Scans say my prostate is minimally promenade. Some say it is borderline enlarged. So, I am now on the bladder medication and Mobic to hopefully break up any muscle spasms I may be having in the lower regions. I did request an antispasmodic drug from the urologist who gave me the boot afterwards. The funny thing is that I don't have a severe enlarged prostrate that gives me the great pain most guys have with chronic prostatitis / chronic pelvic pain syndrome unless I got a mild form of it. I do not have great pain with the other symptoms that chronic prostatitis / chronic pelvic pain syndrome has. They did not see any bacterial in any of my urine tests. So, what could cause this sensation? Why did I have it 2 years ago and it went away after a few days. This time, it is staying awhile. The only thing I can think of to trigger having sex twice in a day which could have thrown my prostate into a spasm that will not quit. I may be getting too old for that sort of thing but that is just a guess on my part. The worst symptom in dealing with this problem is the psychological damage it can do to a guy. Very bad. I have to learn to cope with whatever this is and the maltreatment you get from the medical community because they cannot find a reason for it. I doubt if I ever get an answer for my problem and will have to learn to cope with having a different kind of life hindered by illness. I am probably the only one of the few who have this syndrome. Hope it goes away over time.

[CMT23]

You're definitely not the only one. I've been searching for 20 years and Urologists now brush me aside and basically imply that I am crazy. But I think I know when my body is screaming it wants to pee and I don't actually have to pee. I also has symptoms go away entirely for a few months and then one day they just appeared again and never went away.

There is a list of resources on this site - have you seen it? If you are pharmacologically inclined, I would start by systematically going through and experimenting with each of the medications. I went through them all and ended up where I started. Then there is the pelvic floor dysfunction route, and it sounds like many men and women have recovered after following the Wise / Anderson Protocol. I did for 12-18 months and there was never any real decrease in severity of symptoms. There are also people advocating for Dynamic Contraction Technique / Nutritious movement stretching and claiming cures without doing any of the internal pelvic floor work or the relaxation. I followed a daily routine for at least 6 months and didn't see anything encouraging, although my backs and hips felt better.

Then there is the mental connection to look at. I accept that being high strung or worrying and stressing a lot can cause problems in your body. The real way to address this is to change your behaviour and at the same time start regular relaxation / meditation sessions. I also did this for 12-18 months daily without any real improvement. Perhaps I needed to give it more time.

I'm now working with a Five Elements Acupuncturist. I'd written off acupuncture as I did 3 months 3 x week when I was young to no avail. This woman takes a different approach and especially focuses on the point in the perineum and at the very end of the coccyx. She also does at least 3 sessions a week. I've had about 20 sessions without any real change, but then I tell myself it could naturally take some time for these symptoms to reverse, even if I am on the right track.

For immediate relief, as I have posted, Valium / Klonopin and sometimes Xanax coupled with hot bath and lying down helps me. Have you tried the same?

Keep me updated. I'm always trying new things, even things that take a year to know whether or not they worked. I think I have worked through all the medications and herbs, but if you find anything that offers even some slight relief, please do post.

[Raymond0420]

Hi CMT23,

When did you start having these symptoms?

What are your exact symptoms?

Mine started in my urethra. It seemed to be very hot and it was like my bladder was pushing down on the bladder neck of the urethra and the prostrate giving me the CONSTANT urge to urinate. It continued for about 8 straight days and subsided a bit now thank goodness. Hope it don't come back full blast because I am too old to deal with that stuff now days. However, it gets really bad during the night for some odd reason. I still get up 5-6 times a night to urinate. I am now on Mobic as a strong anti-infamatory drug, some kind of OAB medicine and Rapaflow. All make me dizzy and tired. I am going to find a psychiatrist to see what kind of meds he can give me to help me get through the bad flare ups. I do not understand why this stuff does not go away. Most everything else does. I have come to expect that the medical profession does not want to deal with this problem. Everybody just blows it off.

[CMT23]

My symptoms started 20 years ago at the moment of ejaculation.

Main symptom is a constant sensation of needing to urinate at tip of penis. Also frequency and urgency (probably every 1-2 hours).

I don't wake up at night unless I'm in the middle of a huge flare. I now take 1mg Clonazepam with 15mg of Remeron nightly for sleep. It's addictive of course, but I really could care less. It works for me. Valium 5mg or so during the day can help a little if a flair is coming on.

There is a list on this site of different medications to try. It's a process, but makes sense to me to go through and experiment with them one by one.

Also if you are able, I imagine you should look into pelvic floor muscle dysfunction - of course after all diseases are ruled out. For me maybe it's part of my problem, but 1 year+ of use of the Wise/Anderson wand and relaxation sessions didn't have a real impact.

As I posted, I've tried countless healing modalities and medications to no avail thus far. Should I recover, I will be sure to post an update here.

Best of luck. I know it is beyond frustrating and more people suffer than we imagine. I have friends of a decade who have no idea - they just figure I am a bit odd, avoiding a lot of social situations and taking care of my health as best I can, which seems to keep the symptoms very uncomfortable, but not intolerable. At the end of the day, I am sure there is a solution.

[Raymond0420]

Hi DMT23

I started to feel strange in my urethra at the base of my penis and in the middle. It was as if the urethra was severely irritated which caused the sensation that I had to urinate all of the time. It went away after urination but after 10 to 15 minutes came back again. It could be a virus causing urethritis since I had no bacterial infection. I had the same feelings in 2015 but they went away after 3 days. Now, they came and stayed for about a whole month and I still have it but symptoms have subsided a bit. All urologists are confused and say is is non bacterial prostatitis. They say it is all in the prostate. I do not believe that because the pain is in the penis at the base and middle and top and the irritated urethra is causing the sensation to urinate all of the time - not the bladder. At least that is how I look at it. I am no doctor but that is my guess on the subject. All a urologist knows is how to do surgery and how to say, "Take 2 weeks Cipro and take this Flomax". That is all they say and do nothing else. Urologists have to be the poorest trained doctors around. I can get a 6 year kid to say,"Take 2 weeks Cipro and take this Flomax". They should do more research into our problem since it is rare indeed. Ray

[CMT23]

I agree Urologists are useless unless something very obvious has gone wrong. If it's a virus, I don't see how it goes away like it did for you and like it did for me for a few months 19 years ago. I believe it's some interplay of muscles and nervous system. Because it's the pelvic floor and genitals, it seems endlessly complex - it's not like having a problem with your shoulder.

There are so many things that it could be. At the end of the day, the only way I see is to try the known remedies out there (have you gotten the list from this forum?) and then begin going through one by one. Of course you want to rule out any infection or physical abnormality first. Have you looked at the Wise Anderson protocol? It didn't seem to help me, but it's possible I didn't stick with it long enough. Regardless, it's helped some people. You could also look at TIm Parks - Teach Us to Sit Still, I believe it's called. He had more typical chronic pelvic pain symptoms, but those included urinary symptoms from what I understand and he resolved it all through meditation.

For me I'm fairly certain I have ruled out all infections/physical abnormalities and from there I've been through endless medications, herbs, devices, healing modalities etc. All I know is the severity of the symptoms rise and fall. It's worse after ejaculation. It's worse during periods of stress. I feel best when I exercise often, sleep 8-9 hours a night, stretch, and force myself to do relaxation (Headspace app is good).

For symptomatic relief in acute situations, I've found only benzos, sometimes combined with an opioid (I know you're not supposed to do that) along with a hot bath and lying on my back helps.

For you, did it come on suddenly after some event or slowly over time? For me it was during ejaculation - like someone flipped a switch and I knew I had a problem. I only feel discomfort (sensation of full bladder) in the very tip so I think we have slightly different issues, but at the end of the day, we feel like we have to pee all the time and doctors don't have a clue. I maintain there must be a solution and when I come across it, I will be sure to post! Please do the same.

[Raymond0420]

Hi CMT23.

Yes, my problems came about after I ejaculated one day. I came on suddenly. Urologists did all of the tests and everything was considered normal. That was strange. I got kicked out of my old urology practice since he said there was nothing more he could do for me. So much for medical science and trying to determine the cause. I am getting a huge disrespect for medical personnel.

This never happened to me before and I relieved myself often in the past with no problem. Perhaps, it is my age. I feel a constant urge to urinate even if I just went 10 minutes ago. It feels like the sensation is not in the bladder but along my penile urethra. I have not ejaculated since then. I am too afraid to bring about another episode since I do not know when they will quit or be permanent. I cannot stay up 24/7 all of the time dealing with it. My problem also occurs during stressful times.

I have not tried any of your suggestions yet but will look into them. I tried all of the other urinary drugs but all they did was make me sick to my stomach. They are all poison and useless to me. Ray

[Finallyover]

Ray,

Any solution ???
I have the same problem.
Urinary symptoms you described started after masturbation with me as well.

[CMT23]

It sounds like all of our symptoms started in a similar way. Ray and Finallyover, can you please update your signatures so we can see more details and better help each other?

As you can read in this very long thread, I have tried many, many things - they didn't work for me, but that doesn't mean they won't work for you. The stretching and relaxation techniques I believe play some roll - at the very least the latter will help you better cope.

I wrote off acupuncture a long time ago after I did 3 intensive months with no results. However I recently started seeing a Five Elements Acupuncturist (I guess they differ from the mainstream). Anyway, the woman I am working with now is 100% convinced that it is an issue with the CV/GV (Google it) that was first set in motion after a fall on my lower back 7 months to a year before symptoms began. The points for this treatment are about as uncomfortable and embarrassing as they get, but at this point, I don't really care.

I haven't seen improvement yet, but I feel 'chi' in these points during the treatments where once I felt nothing. I'm open to the idea that after 20 years of a disconnected CV/GV, it may take 6-12 months of treatment.

I'll keep you updated.

For symptomatic relief, all that helps me are Benzos (usually Clonazepam / Diazepam) sometimes mixed with an opiate. I know, not recommended and you can't do this every day or at high doses, but I simply don't care what the doctors tell me anymore. I too have had Urologists tell me simply not to make an appointment, that there is nothing wrong with me, and nothing they can do. When it comes to any alternative method that hasn't worked, I am told that either I didn't stick with it long enough or I have some kind of emotional attachment to my symptoms. The latter is just ridiculous. The former - well it's an easy thing for them to say. Maybe they are right, maybe not.

I'll keep the board updated with my acupuncture progress. Right now I am doing treatments 2-3 times a week.

[Raymond0420]

Guys,

Since I was kicked out of my old Urologist's practice in a very non ceremonious way, I now have a new urologist. The old one said he did not know what is causing it so he just kicked me out instead of trying to find out what is going on. I explained the whole thing to the new urologist but he said nothing which is the standard operating procedure. Since it is a training hospital, you would think that they would welcome the study. I also send my test results to the Natl. Institute of Health in Maryland. They said the urologists would take a look at it. That was 2 months ago and I never heard from them either. The best advice I can give people now is to fly to Cleveland Ohio to the Cleveland Clinic. They seem to be the top dogs in urology at this time. Perhaps, they may have an answer. I plan to do this when I have the time. Right now, my symptoms have played out a little. I am afraid to mess with things that could bring on the full blown symptoms. I hope to get to the Cleveland Clinic to get their take on things. Otherwise, I, and others with this problem, are at a loss. Urologists and other medical doctors are in it for the quick money and bottom line and not our best interests as patients. I still think that we may have damaged our urethral spinchters but this can not be verified by normal or current tests and scopes. Other damage to the urethra could have been done. Even when I urinate I get some strange feelings that were never there before. I guess I will keep on searching.

[HCR123]

It sounds like we are all searching for the answer to this. From the looks of it, some of us that get this frequency and irritation eventually have it go away via physical therapy or yoga and stretching. For some it appears this is an issue with a nerve that's irritated and sending signals down the urethra and tip of penis. I'm currently experiencing that after losing the sensation of a golf ball when sitting. So I lose one symptom and gain another.

Today I did my regular stretching for my glutes on my foam roller. For the first time I immediately felt a tingling go up from the glute and pireneum to my urethra and immediately caused a sensation to go to bathroom. I've been traumatized all day by it and my anxiety reacted to it. It sucks, but I have to believe this will get better. I think I'm going to start on some Gabapenten today to see if it helps with the irritation and pain. I work out and don't try to lift heavy. I want to stay active and not do anything to aggravate and make this worse. I'm thinking it might have something to do with my abdominal and pressure on my bladder, but I can recreate the sensation when massaging the Bulbospongeousos or Ichiocavernous.
Good luck to all of you and if you find something that works please let us know.

[pizzamanguy]

A lot of the people in this thread share the same pattern of symptoms as I do.

A persistent sensation of pressure and needing to urinate felt almost entirely in the penis.
Symptoms came on the night after a 2-3 day bender of trying to force a "hands-free" ejaculation via prostate massager toy.

I'm about 1-2 months in and I'm really needing some encouragement as this is really starting to hurt my life in its entirety.
I've designed the following protocol for myself:

*Normal efforts to do pelvic drops to relax the PF
*maintaining an exclusively (bladder friendly) diet according to the IC-diet" (This is tough but I'm very strict on this)
*Quercetin 2-3x daily
*Graminex 2-3x Daily
*Flomax 1x Daily
*20mg Prozac
*.25 Ativan (usually twice daily) (Looking into herbal supplements that I could use instead)
*Daily walks 1-3 hours
*Stomach Breathing
*Claritin ("mast cell" approach)
*Stretching poses found in Isa Herrera's Book 1-2 sets daily
*occasional Experimentation with interior trigger point therapy using finger (wand in mail)

In terms of what helps so far, the jury's out.
However, when I'm in a hot bath, I feel no symptoms.
When my bowels are full (need to poop), I have no symptoms.
Sometimes when I'm walking, or exerting myself physically, I feel no symptoms
Sometimes, when my bladder is full, I feel the need to urinate but it's not the same irritating feeling in my penis.

Basically, it's almost like it gets better and better until I void and then it's bad again. An empty bladder and empty bowels seems to be when the irritating feeling in my penis is at its worst.
So far, I've yet to experience any of the typical pain I see others complain of on the board.


I'd really love to hear one of the older members that posted in this thread come back and talk about how their symptoms went away!
That would really help my rampant anxiety!

[CMT23]

I think you're the first person who I have come across with very, very similar symptoms to my own. My symptoms started during ejaculation. That was 20 years ago. Don't want to freak you out, but it is what it is. The good news:

1. I know it can go away because it did. Right after it began I stopped ejaculation for 2-3 months and slowly just forgot about it until I said to myself 'wait, that feeling is finally gone'. After ejaculation I was fine. A few months later, the sensation returned.

2. It's early going for you. I personally believe that in the early stages you're more likely to be able to correct these symptoms, especially if it is muscular/nervous system related.

3. If current me got to go back in time and talk to the 17 year old me, I'd advise:

• If budget allows, get all the traditional tests and scans and if normal, consult physical therapists who specialize in pelvic floor dysfunction.
• If budget doesn't allow for the above, do the stretches in the book you mentioned and do them regularly.
• Learn techniques to calm your nervous system, whether that be meditation or floating in an isolation tank or biofeedback or whatever does it for you.
• Exercise regularly
• Look into Five Element Acupuncture, especially the CV/GV
• Learn what it feels like to let your pelvic floor release and make it a habit
• Go talk to a therapist - not that there is anything wrong with you, but I am sure that it doesn't help to go through this without being able to express your feelings
• Know that Diazepam / Clonazepam possibly combined with a low dose opiod is likely to bring some symptomatic relief - (don't take every day - just when it's flaring up). It took me years to figure this out on my own.

You can read through this thread to see the various people I've seen and approaches I have taken. Just because they haven't worked for me doesn't mean they won't work for you.

Some of the people worth speaking with:
https://freedomfrompelvicpain.com/
http://www.rhondakotarinos.com/
http://www.jmweissmd.com/
https://www.pelvicpainhelp.com/

And try not to get frustrated when you find differing opinions. In the end, they may all be right, just in different cases. The whole pelvic region and urological system is complex and can be affected by many things in many ways.

I also get almost complete relief with hot bath followed by lying still. Lasts about 20 minutes. Also, feel much better when bowel is full. Much worse after emptying bowels and urinating.

Did you by any chance fall on your lower back at any point? I did about 6-8 months before symptoms started. Some doctors like to point to this.

Many people have recovered and it's early days for you so stay positive and put in the work. Keep us updated.

[pizzamanguy]

CMT23,
Thank you for your advice.
20 years? Wow. I'm sorry. That's also very disheartening for me to hear.
The last fall I can recall taking was quite a while ago. Like around 2 years ago. I fell off a little skateboard and landed directly on my tailbone on tile floor because I was holding a beer and didn't want to drop it. The area was sore for a few days but nothing after that. I didn't experience anything residual from that fall to my recollection.
I suspect that if this is muscular, it may have more to do with my brand new masturbation habits of trying to "force" a hands free orgasm via prostate massage. Since nothing (besides lots of stress[Graduate school]) leading up to the inception of my ailments seems to make as much sense as a contributing force than that. I was doing that for a few days before my symptoms started in the middle of the night.
It started as a subtle sting in the tip of my urethra.
That lasted a couple days and then waxed and waned for a couple more days - then it was gone.
But by the time the stinging urethra went away, then came the sense of needing to urinate. Which is felt inside my penis at the underside of the base and in the tip. As though there is urine still trapped in there.
I have a urology appointment but it's still a little over a month out from now. They've ordered a CT scan with dye to be completed the week before my visit. Luckily, the urologist is part of a health center (Washington Regional in Fayetteville AR) that also has a pelvic-floor-therapy clinic inside. I've already contacted the pelvic floor therapy people and they said they treat men with chronic prostatitis / chronic pelvic pain syndrome with both external and internal techniques. I was quite surprised to find that somewhere as podunk as Fayetteville Arkansas but hey I'll take it.

I don't mean to sound rude - but your case is quite scary to me. And the fact that we have so many similarities makes that fear even worse.
Do your symptoms wax and wane regularly or (besides when you take baths/benzos) does it usually remain the same?
I have had a couple days here and there that felt normal so far. I also have yet , and I hope I'm not jinxing myself here, to experience a "flare" as bad as my first one. I was rolling in my bed grabbing my genitals just begging for it to stop. It hasn't got that bad again in over a month but the thought that It can scares me to no end.
This whole thing scares me to no end. I spent the last decade of my life preparing for the graduate program that I'm in and the thought that I might need to drop out because of this illness is just a terrifying concept to me.