No pain - just constant sensation of needing to urinate

[CMT23]

Hey PizzaManGuy. Well take some solace in the fact that the people who recover for the most part completely forget about this forum and just move on with their lives. You are also in a time where there is much more known compared to 20 years ago.

It waxes and wanes for me. Like at this very moment, it's maybe 2 out of 10 with 10 being emergency room, knock me out with heroine status. Tonight it might be 8 for a few hours or I may have a few good days. The only predictable part about this is high levels of stress and lack of sleep make it much worse. (On that note, 7.5mg Remeron and 1mg Klonopin nightly lets me stop worrying if I will be able to sleep each night. Yes, I'm dependent on Benzos now, but I'm perfectly fine with that. Lying awake all night with a strong feeling of needing to urinate is not fun).

Do you wake up at night to urinate? I don't now and didn't before the Benzos unless I was going through a big flair, which is one clue that it's not a traditional urological problem like IC or enlarged prostate. Those conditions will cause you to wake up multiple times a night.

You of course need to rule out everything with the Urologists. But if they give you a clean bill of health, then it certainly sounds like a muscular / nervous system related issue. Of the links I gave you, they will all agree with this conclusion and they will all have a different approach. They will however all likely agree that daily relaxation, correct stretching, and exercise is all key. Then you'll see there is a debate as to whether or not there is a need for internal myofascial release massage (like with the wand from Dr. David Wise). In the end, it may become a process of trial and error.

The anterior pelvic floor muscles adjacent to the prostate refer sensation to the tip of the penis. When they are pressed on me, it replicates the urge to urinate feeling in my penis exactly. If you find the same thing, then it's definitely an area to focus on, but of course you need to start with a professional who can look at the entire pelvic floor and all the muscles leading into it.

Of course no one wants to deal with this, but you're fortunate to have someone local and I have to believe that the earlier you attempt to reverse this, the shorter the time period required to heal.

best of luck and keep us updated.

[pizzamanguy]

Thank you for your insight.
In the beginning, about 45 days ago, when I was in a perpetual state of panic, I was waking up several times a night to urinate due to the intense discomfort in my genitals and my massively out of control anxiety. However, I was also taking my Prozac at night (which commonly causes insomnia) I started taking ambien and switched to morning doses of Prozac and I've been better in regards to sleep. I only sometimes use the ambien now, especially if I'm feeling extra anxious regarding my health status and really just need to get to bed.
The last few nights I've been waking up once in the middle of the night needing to urinate but I usually just try to fall back asleep or void and then go back to sleep. I urinate a fairly large amount when I do this so I've assumed it was just because I've been drinking water and or chamomile tea before bed.
In summary, since I've been less anxious, I haven't been waking up as much at night. I do take low doses of Ativan 2x a day but usually not at night.
However I hate to report any changes for the better because I worry I'm "jinxing" myself. (not superstitious, just anxious)

How long did you have this problem before you started trying different treatments?
Thanks again.

[CMT23]

I'm obviously no doctor, but if you're not waking up multiple times throughout the night, my understanding is that typical prostate and bladder conditions can almost be ruled out immediately. I feel like I have to pee all the time and actually pee once every 1-2 hours. But I sleep through the night for the most part. That is already enough to completely confuse most Urologists.

Anyway, of course it's still important to go through all the normal tests to rule out anything obvious.

Since it was 20 years ago and I didn't have awesome insurance, after the standard tests, they just told me 'there's nothing wrong - stop thinking so much'. I guess after a year or two when I realized it wasn't going away on its own and after I saw that it was really affecting the way I lived my life, I started looking at alternative treatments. These days, in the US anyway, more enlightened Urologists would be aware that dysfunctional muscles cause all kinds of urological problems and I would be referred to an expert in physical therapy / pelvic floor issues.

Like I said, I think you are fortunate that symptoms began recently and if given a clean bill of health by the Urologists, that you can explore alternative therapies while it's still early days. I haven't lost hope, but I imagine that after 20 years, my body holds certain patterns and perhaps that's why it's been so difficult to overcome in my case.

[pizzamanguy]

CMT23,
I appreciate you offering me reassurance. I'm sorry that it has been so long for you. Have you lived in Thailand throughout the entirety of your urinary issues?

Also:
Before the irritating pressure (or however you'd describe the sensation) started - I originally had a subtle stinging sensation in the tip of my penis. I thought maybe I had just slept on it or something similar and ignored it for a few days. As that subsided over the following couple of weeks, the irritating sensation took over.

Did yours begin in a similar way or has it always been exclusively a feeling of needing to urinate?

Thank you for talking about this with me!

[CMT23]

It started when I was in the US. Saw some Urologists there. Then was in Australia for a few years. And then mostly Thailand since then.

For me, there was never any stinging. It was during ejaculation and as if a switch had been flipped where instantly I felt the urge to urinate in the tip of the penis. It was immediate and obvious. Completely normal one second. Completely abnormal the next.

Also, never any pain for me like most guys with CPPS. My back and hips and legs are quite tight and uncomfortable most of the time. When i lie down, I can often feel the muscles in the pelvic floor and leading to the penis release and pull back over and over and over. This leads me to believe that it is all somehow muscular in nature. But so far, I haven't been able to find anything that brings obvious and lasting improvement.

Like I said, don't let the duration of my symptoms scare you too much. It seems quite logical that addressing the cause of this soon after symptoms begin will bring results more quickly than if you were to wait a decade or so.

[pizzamanguy]

I see. I too have relatively tight muscles/tendons. When I was in physical therapy years ago for an unrelated issue my physical therapist told me that my tendons were so tight that it was unlike anything she had seen in the past. Fun side note: She explained that tight tendons have a lot of "stored energy" and that "in communist Russia, they would have forced me to train as an Olympic high-jumper". She was interesting - to say the least.

In regards to this being muscular for me - the only reason I believe it's a probability is due to current data and the fact that it can often be worsened/triggered by firm palpation of the bulbospongiosis muscle and the region on the underside of the base of my penis. However, this is undoubtedly where the urethra travels, so part of me wonders if that's a normal sensation to occur when pressing there. Obviously, I never tested this before my symptoms so it's really difficult to know.

I have been approaching treatment as though it's a neuromuscular condition just to be as thorough as possible - since my urology appointment isn't for another month or so. Stretches, anxiety treatments, etc.

Do you notice your symptoms are worse at different times of the day? Generally, mornings are much better for me. This could be partly due to the fact that I usually have to urinate when I wake up. And whenever my bladder or bowels are full, this irritating tightness/pressure sensation in my genitals doesn't appear to be as noticeable (which is very strange). I wonder if maybe it's just because there's more sensation during those times and they take precedence over the lingering discomfort. At any rate, the worst times I've had so far have been in the evening. So there does seem to be somewhat of a pattern.

[CMT23]

Well we both have very tight muscles. I get the same comments when I get a massage / go to physical therapy. I would like to feel totally comfortable and be totally flexible with my muscles and see how my symptoms respond. I have done various stretching programs in the past and lost motivation when my urinary symptoms didn't dissipate. However, the stretches at freedomfrompelvicpain (dot) com did help a lot to take away the stiffness in my back and hips. Now I just need to resume them!

When you press the points adjacent to the prostate (with a wand unless you have really long fingers) if it exaggerates the symptoms, Dr. Wise and company advised clearly this is evidence that there is muscular dysfunction. They said in a normal person it should just feel like pressing on your bicep. (I would like to test that and see if it's the case, but no reason to think they wouldn't be up front on that). For me, it replicates my symptoms exactly and in the beginning I could only put a little pressure there as it was insanely uncomfortable. Over the course of a year I could apply more and more pressure, but symptoms really didn't change.

Yes, my symptoms are almost always much better in the morning than in the evening. Even on a bad day, the first few hours are usually ok.

And yes, the more I pee, the worse it gets. And it's much worse for hours after a bowel movement. It can feel ok in the evening if I exercise, then take a hot bath, and do some relaxation. As soon as I get up and move around it seems to come back.

Made worse by stress for sure - I think a lot of conditions don't do well with stress, although there are those who argue that this is all about stress and only stress. Others say muscles and only muscles. Others say a combination.

What does alcohol do to your symptoms? For me, for the first 10 years or so, red wine while lying down calmed everything as long as I didn't get up to pee. I could feel almost normal just lying there. But as soon as I went to pee, the sensation would come on stronger and stronger. Now I get almost no relief from alcohol and just immediately feel a flare.

[pizzamanguy]

I haven't drank any alcohol or strayed from a strict gluten-free IC-diet since my symptoms began. I am naturally not much of a drinker anyways so avoiding alcohol has been pretty easy for me.

I'm not sure if the diet is helping, but I figured I'd stick with it regardless as an attempt to heighten my chances of getting better.
Diet, phytotherapy, stretches, walking, and trying to tackle my anxiety has been the focus of my treatment basically for a month now.
It's hard to say if it has gotten any better - or if I'm just growing accustomed to it. I've been trying to limit my urination to once every 4 hours - however, this isn't always successful and by the time 4 hours is up I'm usually really squirming. So, I've been urinating less but only because I'm working very hard to do so. In the event that this is an overactive bladder issue, I figured trying to train myself to urinate only 4-6 times a day might help.
But again, the fullness of my bladder and the irritating sensation in my genitals do not seem connected. Where, in fact, a full bladder often just feels like a full bladder and the genital sensation is often either masked or gone.

Either way, there HAS been one improvement: I'm not as anxious as I once was for sure. I still get moments - like tonight, where I feel a bit unstable but the past few days have been relatively good compared to my first few weeks. Still, I cannot shake the paranoia that this sensation will never pass and perhaps only worsen. My psyche is very stubborn like that and it's something I'm trying to work on - even though it could very well be what the reality of the situation is...

Also, I've used a pelvic wand and pressing anywhere (besides the actual prostate - which is supposed to be avoided) didn't seem to exaggerate any symptoms. In fact, all that the internal work did was produce mild rectal pain afterwards - which is almost certainly related to the hemorrhoids I've had for many years. I decided I was going to hold off on internal work until a professional can help me there.

[webslave]

Holding urination until you are uncomfortable is not good. It acts to heighten the neuronal windup that needs to be subdued.

[pizzamanguy]

Hm, if that's the case I made need to be more lax about my frequency then. However, part of the reason I started doing that was because I find that the bothersome sensation gets more wound up the more often I urinate. Perhaps there's a balance that I should find. Maybe once every 3 hours is better. that would still be 5-6 times daily which I believe is within the range of normal. If I went every time I was slightly uncomfortable, I'd be reverting back to like I was initially - in the bathroom several times in an hour desperately trying to relieve myself and becoming more and more panicked, symptomatic. That's the difficulty with this symptom - it's sometimes hard to know if I actually need to go or if I'm just thinking about my urinary discomfort too much. often times I'll just wait and find that I can ultimately wait for longer than I expected.
Hell, this is so incredibly frustrating.
I so badly hope that I can get back to a place of at least relative normalcy.

[webslave]

If you are not experiencing PAIN, then you do not have CPPS, yet, and you may never have it. You may need treatment for OAB. Have you been evaluated for OAB?

In some cases, frequent urination is not a symptom of a problem, but IS the problem. In people with overactive bladder syndrome, involuntary bladder contractions lead to frequent and often urgent urination, meaning you have to get to a bathroom right now -- even if your bladder is not full. It may also lead you to wake up once or more during the night to use the bathroom.

With OAB, they'll treat you with one or more of:

1. darifenacin (Enablex)
2. desmopressin acetate (Noctiva)
3. imipramine (Tofranil)
4. mirabegron (Myrbetriq)
5. oxybutynin (Ditropan)
6. oxybutynin skin patch (Oxytrol)
7. solifenacin (Vesicare)
8. tolterodine extended-release (Detrol LA)
9. trospium extended-release (Sanctura XR)

[pizzamanguy]

My very first symptom was a stinging pain in the tip of my penis - It woke me up in the middle of the night... but that faded after a week or so and evolved into a frequent pressure/irritating feeling near the base of my penis that feels like I have to urinate. Since the (subtle) stinging pain passed I haven't really experienced any painful symptoms since. It has been about 2 months. The reason I doubt it's OAB (or even IC) is because I don't ever get the sensation of urgency (needing to go RIGHT NOW) unless I've been holding it for 3-4 hours, just a nagging discomfort in my genitals that, in the first few weeks, sometimes got so bad that I would writhe in my bed and sleep only 20 minutes at a time.
In short, there was a form of pain initially, but only for a week or so. Since then it's been exclusively urinary discomfort (feeling like I haven't completely voided) which is worse immediately after voiding and gets better until I void again.

[pizzamanguy]

I should also note that since I can remember I've always had *fleeting* testicular pain. It would appear for a few days at maximum and then disappear completely for months. I never thought anything of it because it's always been temporary - sort of like the "proctalgia fugax" I've also experienced. Since these symptoms never stuck around for very long, I've always chalked it up to those mysterious aches and pains the human body can experience.

Also, I've often had some mild "achiness" after ejaculation. Feeling almost like my prostate was aggravated by ejaculation. It hasn't been every time - but it does happen. It almost always happens if I try to ejaculate 2-3 times in less than a few hours. I also thought this was relatively normal and didn't think much of it since it was inconsistent and read online that excessive ejaculation can cause some achiness.

None of these past and present fleeting issues (testicular/post ejaculatory discomfort) that I've had for years have been heightened since the persistent urinary discomfort was brought on 2 months ago. There doesn't seem to be a connection between one or the other, but this is not to say that they do not have the same etiology.

So, whether I have CPPS, I can't say. I still need to be analyzed by a urologist (which happens next month) before I can rule other issues out.
I came to this forum to perhaps get a jump start on treatment in the event that my symptoms are (U)CPPS related.

[webslave]

Let's see what the uro says. I still think you're in the foothills of CPPS. But you are not good at keeping calm. Work on that.

[pizzamanguy]

Thank you for your advice... and I agree. I think that perhaps both careless masturbation habits and immense stress have affected the muscles within my PF and this is possibly the cause, or at least a major contributor, for my symptoms. However, internally there doesn't seem to be any findings. Still trying to figure this out. Either way, pain has not been an issue but I suspect it would be at this point had I continued my lifestyle.
Lastly, I have been significantly more calm since the onset of my illness. Medicinal/herbal intervention has been helpful. CBT is also being planned but long wait times are causing a 30+ day delay.