No pain - just constant sensation of needing to urinate

[NathanDrake]

CMT23, sounds like your problem is almost identical to mine (with the exception that I don't feel the urge at the tip of my penis, rather the base). I feel a constant tension around my pubic area (right above the base of the penis, near the bladder). This is the "constant need to urinate feeling". And when I go to the restroom, it's difficult for the sphincters to relax in order to urinate (it's not a smooth process, takes a few seconds of mental patience).

Do you also have "hard flaccid" symptoms? Do you have tension in the rectal area along with a weird feeling when performing a light Kegel (like muscle soreness)? Do you have a left testicle Varicocele? Premature ejaculation? I have all of these symptoms as well.

Flomax actually works for me. It not only resolves the hard flaccid, but it makes urinating much easier. I guess I don't know why, if it's mental, that Flomax would work so well? And why would I need Flomax to resolve muscular tension when no other method works as effectively? It still doesn't resolve the constant urge sensations, however.

I am also doing the course from David McCoid's DCT and it has relieved a lot of structural issues with my back, hips, glutes, and legs. I have been doing it for 4 months now so far. I think it's helped, but like you I am not seeing full resolution of my primary symptoms. I ultimately feel that his program is on the right track in general, but everyone's muscular situation is different and it may be difficult to isolate/target the program to whatever is the primary driver of our symptoms. His program takes a broad approach but I think more targeted work is needed to completely resolve the issue...but for me it's impossible to know which ones to work on.

[CMT23]

I'm sorry to hear that you are having to deal with these symptoms.

When I go to the restroom it takes a few seconds to get the stream started and then it's very weak once it does get going.

No hard flaccid symptoms.

left testicle Varicocele - yes I do actually. Never thought it was related to urinary symptoms. Do you have other info?

Rectal area - nothing odd, but after ejaculation if I get up and walk around as opposed to laying flat for 30 minutes or so, I get a strong aching in the perineum, which lasts an hour or more. I can exacerbate and replicate the constant 'needing to urinate' sensation by let's say, ceasing motion just before ejaculation - not allowing ejaculation to occur. Of course this all started during ejaculation. So it seems obvious something has gone wrong with the muscles responsible for ejaculation. Others will argue nervous system. Others will say it's a mental block or I am in a feedback loop unable to let go of this sensation. I've seen a lot of people and done a lot of things and heard a lot of theories.

David McCoid's course no doubt will do no harm and I don't know if I had continued for another 6 months to a year if I would be recovered. Same with Wise Anderson protocol. But I just got to the point with both where I didn't feel any kind of a shift in my symptoms after what felt like a significant amount of time.

I have yet to find a single medication / herb / substance that provides obvious relief. I can mask the symptoms somewhat with Benzos. I can avoid flairs by sleeping 9-10 hours a night, exercising regularly, avoiding stress, avoiding alcohol, avoiding daily ejaculation. But it is always there. It's just a matter of the degree to which is is bothering me.

I'm coming up on 40, having pursued a 'cure' for over 2 decades. I'm becoming more interested in trying mind altering substances in a controlled environment to achieve some kind of insight or break this feedback loop if there is one. Ketamine is possible now in the US, but I'm not there and it's expensive. MDMA assisted psychotherapy looks interesting. Unfortunately not readily available anywhere that I know of. Sure could order on the dark web and sit in my room, but I don't think that's the way to go.

I hope you are able to find a resolution. No two people are alike. And in my case, all symptoms disappeared a few months after they started. (I had stopped ejaculation and docs had told me to stop worrying, and somehow I just forgot about it and it went away). Then like a light switch it came back a few months later.

I don't want to freak people out here with the timeline of events, but it is what it is. Urologists should be much more interested in helping to get to the bottom of these kinds of mysterious symptoms and much less defensiveness and dismissive. I have found them to be truly useless unless you have blatantly obvious problems ie. infection, prostate cancer etc.

I'm convinced that eventually whatever is causing this will be known and resolved, but I don't know when. I do hope I get to enjoy a couple decades of life living in physical comfort. If nothing else, this experience has taught me a great deal of empathy.

[NathanDrake]

I hope we both find peace with this condition. I’ve come to accept that I may not, and it’s ultimately hurting my relationships.

I can at least say at this point my pain is not getting any worse, and through David McCoids program I’ve gone back to being able to sit without pain. So for me it is improving but progress is incredibly slow.

Regarding Varicocele - is yours large and visible? Mine is a grade 3. If you do a google search for Gat Goren you will see that they have a theory BPH being related to varicocele since the redirected blood goes through the prostate with blood rich in testosterone. They perform embolization on the vein and claim that the Prostate shrinks to a normal size. Their theory doesn’t have a whole lot of research behind it or support from the medical community.

I will say that I’ve had two urologists say that my DRE was normal, so I would think that I don’t have early onset BPH, but I don’t know how subjective a DRE is. I’ve never had an objective MRI or ultrasound on my prostate. Have you?

[CMT23]

I looked at Gat Gorenjust now. The thing is my prostate is normal in every way by all accounts. Maybe this theory is right in some cases of BPH, but everything about my prostate is normal.

Now if you ask Tim Sawyer and company, the muscles all around my prostate, especially high on the edges, are completely abnormally tender and pressing on them recreates my symptoms. They further maintain that in a normal person, pressing these muscles would cause little to no discomfort. Thus the conclusion that these muscles are playing a role in my symptoms.

Makes sense, but come to think of it, I have never seen anything about a control group without symptoms being prodded in this way. It would be very interesting to know if indeed they feel little discomfort (confirmation of muscles gone awry in my case) or if they feel an intense need to urinate in the tip of their penis (confirmation that the whole muscle theory is questionable). I really would like to know. Anyway, i have the wand and did over 12 months of the program and didn't feel any major shift, although after many months I had to apply much more pressure with the wand in order to feel the same level of discomfort. I thought that meant progress was being made, but in the end I just didn't feel any real shift happening.

The Varicocele is not that large or visible and I remember it appeared at least a year before symptoms started so I don't think they are related.

I have had ultrasound of prostate and bladder and MRI of neck down to spine and pelvis and x rays and two cystoscopies. Everything is always 'normal'. I didn't do the procedure where you urinate with the tube up your penis to measure flow and what not. The urologists seem to agree there is no point because none of the bladder medications / smooth muscle relaxants have had any positive affect on me and I have tried them all.

I've thought about 3D body scans and other tests, but I'm not in financial shape to pursue it all right now and the doctors here in Asia have told me point blank they have nothing to offer me aside from one pain management specialist who is willing to try nerve blocks (I'm curious and may try for symptomatic relief) and ketamine infusions (extremely expensive here and doctor has only used it 3 times and doesn't report any positive results).

There is no doubt dealing with something like this hurts the quality of your relationships. I can't even begin to count the number of events and invites I've skipped or left early due to this discomfort. And then events where of course it's not enjoyable as it would be if everything felt normal. I'm sure people assume I'm anti social and those who I have told about my symptoms just can't really believe it because I appear healthy in every way.

But I try to take a big picture view. I'm still alive - that's not guaranteed to anyone. I know how to manage things to avoid feeling in extreme discomfort most of the time. When it does get out of control, I know how to retreat and take Benzos and rest and sleep and exercise and get things to reset. I still have my mind and all my limbs. Eventually these symptoms will be understood and resolved, but of course I don't know when - could be tomorrow. Yes no one would choose this, but when you look at all of humanity and all the suffering humans undergo, well, it could be much worse.

[MrDavid]

Yes no one would choose this, but when you look at all of humanity and all the suffering humans undergo, well, it could be much worse.

That is very inspirational! Thank you

[JoshCaro]

CMT23

I read all your updates and you had improvement over the year that you dedicated to the protocol. Actually your story is text book as Dr. David Wise described in their clinic and in their researchs. He said that it could take a year or two or maybe more in some cases. Have you talked to David Wise about all this? I would stick with the protocol, in my perspective it does helped you. Those windows of no symptoms that you've been experiencing for example.

I wish you the best.

[CMT23]

Hi. I appreciate this. Part of the improvement I felt during the time I did the protocol was that mentally I 99% believed that I had found the cause and cure. But 10 months in and I wasn't overall noticeably better and I moved on. I admit, I don't know if had I pursued it for 2-3 years if I would now be symptom free.

I spoke with Dr. Wise near the end of the year I did the program. Basically their only advice is do more time in progressive relaxation and up the frequency of the internal massage.

Maybe I will start up again. It's hard to get excited and motivated when I really didn't feel better overall. The improvement I felt was usually during relaxation after hot bath. I can get that same reduction in symptoms after taking hot bath and lying down watching TV.

While I'm here, I recently did the MicroGen DX test on prostate fluid and urine. The former only showed Staph bacteria, which is probably harmless / contamination. Urine showed Streptococcus Mitis. I just did 2 weeks antibiotics that were recommended by the test. No change in symptoms.I will have to mail them my urine again and if the bacteria is gone, I guess that was another false lead.

[elias]

Technically, maybe it shouldn't be called "Chronic Pelvic Pain Syndrome" in such cases, since there's no pain...

However, that same classification system has a Class IV in which there are no symptoms at all, yet it's under rubric of CPPS. Inflammation of the prostate is found there (in Class IV) and responds to treatment. Which shows that there can be inflammatory process(es) in the prostate without perception of pain..

There's video of David Wise --of the Wise protocols-- in which he says that for a long time-in his prostatitis ordeal- his only symptoms were frequency/urgency. No Pain. He says this was caused by pelvic muscle tension

It's also conceivable that urgency--as a noxious sensation--- is a type of pain or equivalent thereof. Though perceived differently. .And brought on by pelvic tension

In my own experience, I was greatly helped by acupuncture. I had non-bacterial prostatitis with inflammation (Type IIIa) The pain resolved fairly quickly with acupuncture. When the pain returns, its is mild enough for me to ignore.. I do get periodic relapses. But during those relapses, it's mostly frequency/urgency. Oddly, that is helped a lot by Quercetin. The theory is that Quercetin works as an anti-inflammatory. Yet my sensations of urgency is helped by Quercetin, even when there's no or little pain.Hot baths help as well...In Shoskes' work, the benefits of Quercetin were mostly in helping with pain and much less so with urinary issues..Yet Quercetin now helps me with that. So maybe the acupuncture had longlasting curative effect on the perineal pain, so that relapses are primarily urinary?

My guess is that these sensations are highly subjective, and different people experience same events differently. Classification systems are not always neat little boxes..

[webslave]

However, that same classification system has a Class IV in which there are no symptoms at all, yet it's under rubric of CPPS.

Nope. UCPPS is only Cat IIIa and Cat IIIb

There's video of David Wise --of the Wise protocols-- in which he says that for a long time-in his prostatitis ordeal- his only symptoms were frequency/urgency. No Pain. He says this was caused by pelvic muscle tension

It's possible. I call it "the foothills of UCPPS". But it does not always go on to UCPPS. Plenty of people have only freq/urg forever.

In my own experience, I was greatly helped by acupuncture. I had non-bacterial prostatitis with inflammation (Type IIIa) The pain resolved fairly quickly with acupuncture. When the pain returns, its is mild enough for me to ignore.. I do get periodic relapses. But during those relapses, it's mostly frequency/urgency. Oddly, that is helped a lot by Quercetin.

Interesting report, thanks.

[CMT23]

I remain with “just” frequency / urgency. No pain, but I will get aching in perineum after ejaculation unless I lie still for 30 minutes or so.

There is no doubt I have tight pelvic floor muscles and tight hips and back and of course it’s all connected. However nothing I have done seems to have released the muscles.

I did 50 treatments of acupuncture over three months I believe. Nothing.

Currently doing the DCT exercises. Feels great for my back and hips. I did for 8 months previously. Perhaps I need much longer to really change my body’s tension / structure.

Interested in trying Ketamine infusions to see if it can break the cycle somehow, but in Thailand the doctors are very, very wary about even trying this.

[elias]

Hi CMT:

Sorry you're still suffering with this.

I actually do get post-ejaculatory pain as well as worsening of urgency/frequency/nocturia. I avoid ejaculation altogether because it takes so long to recover. That's why I said I have no pain, because I avoid this particular trigger..

The acupuncture did help dramatically a few years ago, but it was in context of more comprehensive program including Tai Chi and some other exercises along those lines. I used to go back for more acupuncture when I'd get flare-ups. Sadly, the physician treating me with this modality had passed away. Another acupuncturist had much less effect on all this. So it's all a bit odd

The flare-ups are triggered by bouts of IBS, periods of sleep loss and stress/depression. As said above, I avoid ejaculation. I mention IBS because I see you mentioned bowel movements in your tagline.

The odd thing about the frequency/urgency is its almost always starts just before going to bed and continues thru the night, waking me often. It seems to mysteriously disappear during regular hours. (It is unlikely nocturnal polyuria however. It's easy to test for that..)

As for trigger points, I don't have those in the "usual sense" of that term. But I do find I can press very sore spots in my lower abdomen to help provoke bowel movements, which does alleviate sensations of urgency a lot.

Quercetin seems to help some, and its beneficial effects came on after only a few days. Benefits of Quercetin holding up after almost two years now. Very hot baths help quickly and dramatically, but only temporarily. I've started pelvic floor exercises. Hard to say how much those are helping, because inevitably I seem to get relapses after full recovery.

Hope some of this helps

[elias]

Another thing that seems to help me is intense aerobic type exercise, such as zumba..etc... Those aren't mainly slow stretching as your basic pelvic floor exercises..It's hard to say how much it really helps, since I go through fairly long asymptomatic periods anyhow...So it's often hard to say how much something is helping. But it is having an overall positive effect.

These "cycles" seem to correspond to recurring bouts of my IBS

Admin comment: IBS ↔ UCPPS by neural crosstalk

[elias]

Admin comment: IBS ↔ UCPPS by neural crosstalk

Amazing!

The acupuncturist who had helped me seemed to be telling me this in different words years ago. I had difficulty trying to understand her, but she seemed a brilliant physician (acupuncture was something she did on the side) It is possible that part of why acupuncture helped so quickly was her linking the two for me

Would you kindly care to elaborate, or refer me to posts here or (even better..) to scientific literature which explains this more--aside from the known statistical overlap between the two conditions?

[webslave]

IBS and UCPPS are noted in many studies to be comorbid (occurring simultaneously) in many patients. Flares in one can lead to flares in the other. The link is nerves. Crosstalk is one of the most complex areas of medicine (take a look at https://www.nature.com/articles/s41385-020-00368-1 )

But if you want a study about crosstalk in IBS and UCPPS, try this one: A model of neural cross-talk and irritation in the pelvis: implications for the overlap of chronic pelvic pain disorders (link)

[elias]

Thank you. Downloaded both articles and will read when rested