No pain - just constant sensation of needing to urinate

[CMT23]

I tried any accredited quercetin product and any accredited quercetin product without success. I'm thinking of trying cystoprotek. I wonder how it helps if we supposedly have a muscle/nerve problem. Anyway, I have been seemingly immune to every medication and supplement so don't have a lot of hope for this one, but I guess it needs to be crossed off the list.

My big question now is if the protocol is helping should I expect to feel nearly recovered after 16 months? (I don't) Or is it reasonable to think that I could feel only say 20% better now and that within a year or two I could be fully recovered? Basically I feel like I am doing the right thing, but I still have many moments and many days when I am in quite a bit of discomfort. chronic prostatitis / chronic pelvic pain syndrome is still a major issue in my life. So doubt creeps up and I wonder why I'm not cured after what seems like a long time. My hope is that it's just a matter of time.

[webslave]

I wonder how it helps if we supposedly have a muscle/nerve problem.

https://ucpps.men/chronic-prostatitis-is-a-psychoneuromuscular-condition

[CMT23]

I wonder how it helps if we supposedly have a muscle/nerve problem.

https://ucpps.men/chronic-prostatitis-is-a-psychoneuromuscular-condition

Thanks for this. Maybe I'll try it for 6 months and see what happens. At least it's cheaper than some of the other meds I've been trying lately. My Lyrica experiment was a failure and not cheap...

After internal massage 3x week and relaxation and stretching daily for 16 months, would one expect a huge reduction in symptoms? I realize that everyone is different so I guess what I am asking is, in general if one does not feel a huge amount of relief after 16 months, is it still reasonable to believe that continuing the protocol will bring significant relief at some point?

There must be some duration of time at which point one could reasonably assume that he is not going to be helped by the protocol. I have seen enough that I believe I am on the right track, but I guess I am just frustrated as I had assumed that I might be nearly cured after almost a year and a half of this. Am I just being impatient and might I have to continue the protocol for many more years before seeing solid results? I think the most difficult part of all this is not knowing the answer to that question. If you could tell me that I would be cured if I just keep it up for 18 more months, I would be jumping for joy.

[webslave]

As you know, Dr Wise himself took over 2 years to get better using the protocol.

If you've kept a symptom diary and you are absolutely sure you're not improving after 16 months, then yes, something is wrong. The hidden factor holding you back could be many things. In my case, it was celiac disease (most people with celiac disease don't know they have it). That played havoc with my nerves, as gluten can. How many men with CP/CPPS have hidden celiac disease? I wish I knew!

That may be your problem too (do you have allergies, or are others in your family allergic?), or you may have another food sensitivity or hidden allergy (get the Brostoff book to help you find that hidden food problem, if it exists).

Are you still tensing your pelvis with anxiety/stress? How stress-free is your life? Even sitting at a computer, concentrating hard, leads to pelvic floor tension.



Alternatively, perhaps you are actually slowly improving, but you are not accepting of the 2-step forward, 1-step back nature of the situation:



As I've opined before, those not helped either have some other condition of the pelvis, and not CP/CPPS, or are not consistently having internal massage and doing the relaxation part, or have a dietary trigger.

So in summary: Unfortunately, we know that the Wise-Anderson Protocol does not help 100% of people who undergo it. The reasons for this have been debated before. Points raised were the inability of some people to diligently follow the pelvic relaxation exercises, the lack of ongoing skilled internal massage, and the possible influence of dietary or allergy factors, amongst others.

The one other thing I'd add is that, from my experience, a small subset of the non-responders have what I consider to be florid psychological problems in the anxiety-obsession spectrum. These men are suspicious, combative and very hypervigilant. They are clearly not going to improve without in-depth assistance from psychotherapists and medication via psychiatrists.

[CMT23]

Thanks as always Webslave. I do believe that I have a pelvic tension disorder based on this:

1. About 16 months ago, even touching the areas high and to the left and right of the prostate left me in incredible discomfort and exactly replicated my symptoms. Slowly I was able to apply more pressure until now I have to go to about 50 on the wand's pressure meter in order to feel that same level of discomfort. So clearly the muscles were/are dysfunctional and there has been a change. As we know, these areas high and next to the prostate are connected to symptoms in the tip of the penis, which is exactly what I experience.

2. Lying still in the sun often brings reduction in symptoms as does getting a full body massage.

3. Hot bath and lying down almost always brings very significant reduction in symptoms

4. Worse after ejaculation unless I remain completely still. When i do so, I often feel a reduction in symptoms. As soon as I move around (if it is within 20 minutes or so of having sex) my symptoms feel much worse.

5. For the first year of stretching, during the stretching my penis would uncontrollably quiver. I mean like very obviously shake. I take this to mean that the muscles in my legs were especially tight leading all the way to the penis.

6. Lying down and taking 30 or 40mg of valium just about knocks out my symptoms.

7. I never feel really good while sitting straight up. But if I get in a position like one would sitting in a business class seat on a plane where my abs can stretch, then I can often times experience relief.

8. Acidic foods have no effect whatsoever. I don't have IC.

9. Symptoms started in a single moment during ejaculation before I was sexually active. It was like flipping a switch. One moment everything was normal and the next moment I thought, 'Oh God, what have I done to myself?' I assume that the muscles were right on the edge of causing symptoms and the contraction during ejaculation was enough to send me over the edge.

10. Three months after symptoms began, they disappeared for about three months. Then one day started back up again. You can rule out a magical virus or bacteria.

So for sure there is something going on with tension/anxiety and my symptoms. My symptoms almost always feel much worse when I go into a situation like a meeting with my boss/clients and I am supposed to be "on" so to speak. When I can let myself go as happens during a massage, I usually feel almost symptom free. I spend 5 days a week sitting in front of three screens answering emails and calls. I have freedom in my job, but of course I feel stress. I have always been the kind of person to over think and overanalyze things.

I don't believe food allergies are my problem. I did a test and it came back showing sensitivity to barley only. Also, when the symptoms disappeared completely, I was eating plenty of dairy, soy, and wheat. I do know that coffee causes urgency and frequency for me and I continue to drink a cup a day. I don't know what effect this has. Some days I drink a cup and feel fine for hours. Other times I rush to the bathroom 2 or 3 times in an hour. (But for the first 14 years of this, I never drank coffee or any drinks with caffeine)

I feel better than 16 months ago at times, but my symptoms are all over the place. In a given day I might have a few hours of feeling normal and a few hours of being in serious discomfort. Thankfully in the past 16 months I have not been in debilitating discomfort like was happening very frequently for hours or days at a time 2 years ago.

So I guess I am just writing to assure myself that I am on the right track and share my experience thus far.

[CMT23]

For a long time I have noticed that as the day goes on and I become hungry, my symptoms become worse. And if I skip a meal, especially lunch, my symptoms really become worse. I also often notice that eating a large meal can sometimes significantly quiet my symptoms.

Having recently seen the documentary Fat, Sick, and Nearly Dead (excellent), I decided that maybe it was time to lose this pot belly that I have been developing over the last year. The documentary promotes a veggie juice only diet for a certain amount of time - my goal was 10-14 days. By the evening of the very first day, the hunger was present, but completely tolerable. What was far worse was my usual chronic prostatitis / chronic pelvic pain syndrome symptoms, which were feeling 20 times worse than usual.

So since I obviously can't handle juice only, today I have decided to do a piece of fruit in the morning, a very light lunch, and juice and a few almonds throughout the afternoon and evening. Getting a little bit of food in my stomach has made all the difference and today my symptoms are at their usual level of discomfort, maybe a 5/10. (Last night was 9/10 and it took 1mg Klonopin to get through).

So my question is, what on earth is the connection between the sensation of hunger/an empty stomach and an increase in the severity of my symptoms? Like I said, this is something that I have noticed throughout the past 16 years. Does anyone else have similar experiences?

[webslave]

Probably due to urine becoming more concentrated, because people usually drink when they eat. Concentrated urine tends to irritate the lower urinary tract in men with CPPS.

[CMT23]

But based on that theory, if I was to drink only water for a day, my urine would not be as concentrated and I would feel better. But I am certain that as I became very hungry, my symptoms would become worse.

[CMT23]

And in a sort of follow up to this, I was just looking through some old journals from 1997 and found multiple entries wondering what this 'bladder thing' was, noting how 'it is back today in full swing', and also remarks from a Urologist who had told me that it was all in my head. Somewhat depressing that 16 years later, here I am with the same symptoms having tried many, many different therapies/herbs/medicines etc. Really hope that I start to feel some solid results from the protocol soon.

Even back then, I made notes that sometimes it felt almost normal and other times it was overwhelmingly uncomfortable. So seems that it has always waxed and waned. Interestingly, I made notes that it seemed to get worse with anxiety and fatigue and also after drinking alcohol. So those three things have been pretty consistent throughout.

[webslave]

It's worth noting here that you do not have CPPS. Frequency and urgency on their own do not constitute CPPS. Pain is the signature symptom of CPPS, and since you lack it, you are not a chronic prostatitis / chronic pelvic pain syndrome patient.

As far as I know, the Wise-Anderson Protocol has not been studied in relation to non-CPPS patients. So it's difficult to advise you.

Because the purview of this site is CPPS patients only, I am going to lock this thread. It seems to have run its course. Email me if you disagree with this decision and want to continue the thread.

Edit: unlocked after email discussion.

[CMT23]

Went to a pain doc. Over here they are very limited in the pain medications that are made available. The doc gave me extended release Morphine and told me I could also break them in half for immediate effect.

20mg broken in half did nothing for the urinary discomfort
30mg unbroken the next day also did nothing for the urinary discomfort

In both cases I felt a little high, hot, and itchy.

I guess I will be asking her, but it is very deflating to apparently be immune to even morphine. Maybe I just need a higher dose. I just want something to use occasionally when I am really hurting.

In other news, the doc says I should do a Pudendal Nerve Block and that I have nothing to lose. If I get immediate relief of at least 50%, she says that means there is an issue with one of the branches of this nerve and nerve blocks would be used every 2 weeks going forward. If I don't get relief, then it's another thing to cross off the list. Is there anything to lose in doing the nerve block? Somehow I don't take sticking a needle in my back lightly.

[GARYS]

Hi CMT23, I can feel for you reading your posts!! Hang in there! I've been been meaning to respond to a few of your posts. I've never had a pudendal nerve block, but in the beginning I had two other separate nerve blocks for this problem but I didn't have any luck. The one a pain doc I don't think ever hit whatever she was aiming for because I know she tried three to four times. Hopefully yours will do something (if you have it done)!! As far as how deep people go with the wand, I set mine about ¾ of an inch deeper than Tim did (after using it for several months). It's an inch longer than my middle finger. I think I'm going to experiment with a little longer soon. I also have never had any luck with any type of pain meds or anxiety meds. I was prescribed Valium for years and took it daily with no benefit. On the other hand beer makes me feel pretty good!! So I guess it makes my muscles and mind relax. Take care!
Garys

[CMT23]

Thanks for the reply Gary. Tim replied to my email and said to try setting it a quarter inch longer than it was. So I have done that for now. I still can replicate my symptoms at about 20-30 on the meter when pressing adjacent to the prostate and high up. (Started at 0-1 for that effect 16 months ago). I remember well that he told me that in a normal person, this should feel just like pressing on any other muscle. So I hope that is a sign of progress and means that it is just a matter of time. I spoke with David Wise last week who told me that it is a clear sign of progress and to continue the protocol without putting expectations on it as far as how many months/years it should take.

Really don't know about the nerve block. Maybe the nerve is irritated due to the tight muscles! Or maybe it's something else. I'm just not real excited about needles in my back near important nerves. I Googled a bit and of course there are some risks, but doesn't seem too extreme. I had seen the pain doc 2 years ago and she was very excited to tell me that since then she had 4 other men come to her with similar symptoms - all with the same story as far as doctors not being able to help. I think it's more common than most people would imagine.

As far as medications, I just have to believe that something out there will give significant relief, but so frustrating that nothing really has yet. It would be amazing if I had something that could knock it out when it is really bad. I do remember being injected with Pethidine at an emergency room and the pain going away instantly - not that that is any real long term solution. Will start CystoProtek this week and looking at Nortriptyline and then maybe Memantine, which seems to have helped some people.

[webslave]

I do remember being injected with Pethidine at an emergency room and the pain going away instantly

CMT23, since you do not have pain per se, you mean that the pethidine removed the constant urge to urinate?

I think in many cases of true CPPS, and perhaps in cases like yours too, the brain itself may be the ultimate culprit. Look at lower back pain (extremely common) — no specific abnormality can be identified in up to 90% of chronic lower back pain cases, and spinal imaging shows no abnormalities. Yet the pain can be seen in the brain. (source, source).

Pain and/or nerve syndromes (leading to frequency?) are also more likely in nerve-rich areas of the body, like the pelvis.

Chronic pain or toxic stimulation in the pelvic region can be the driver that leads to physical and chemical changes in the nervous pathways making the situation worse. This can mean the pain or unwanted sensations continue even when the original cause of the pain/sensations has been treated. Pain or unwanted sensations persist because the nerves and brain have 'learnt' to transmit these signals. It's the old analogy of a pathway through grass:
viewtopic.php?p=40713#p40713

[CMT23]

I do remember being injected with Pethidine at an emergency room and the pain going away instantly

CMT23, since you do not have pain per se, you mean that the pethidine removed the constant urge to urinate?

Hi Webslave. Yes, that's exactly what I meant. The urge to urinate disappeared immediately. From being in such intense discomfort that I made my way to the emergency room at 3 in the morning to feeling perfectly fine.

If the brain is indeed the problem, then I am hoping that some chemical or combination thereof can help to reduce the urge sensation. That is why I keep returning to trials of all the various Rx possibilities. Also, there is no doubt that in situations where I experience emotions of extreme stress/fear/rejection that my symptoms become far worse. So that is where I hope the daily relaxation can perhaps help to calm the nervous system somewhat.

At the same time, as long as pressing on the muscles adjacent to the prostate recreates my symptoms, if I believe what Tim Sawyer told me (and I do), then this means there is a definite physical problem related to these muscles. If I get to the point where pressing on these muscles does nothing to recreate my symptoms AND I am still experiencing the same level of discomfort, then that is when I would really begin to worry because it would mean that I have rectified the physical problem without getting relief.

Anyway, I can't see just giving up and accepting that 'something' is wrong and I just have to live with it, so I will continue on.

With that in mind I am going to try this: Tenscare itouch Sure Pelvic Floor Exerciser
https://www.tenscare.co.uk/index.php?ac ... product=81

It has a low frequency setting for urge incontinence and describes the way it works as:
A lower-frequency current has been shown to have a beneficial effect in reducing the involuntary contractions in URGE Incontinence. It works by slowing down the rate of false signals sent to the brain.

I don't ever lose control of my bladder, but I do fit the definition as far as:
"Urge Incontinence describes an overactive bladder. You may experience a strong sudden urge to go to the toilet .....or have to go so frequently that it upsets your life"

The stress incontinence setting is not at all for me as that is for people trying to strengthen their pelvic floor muscles whereas I am trying to stretch them out. From my understanding, on the Urge setting, this strengthening doesn't take place so I won't be interfering with the Wise/Anderson protocol.

I'll keep you updated.