5 months of Stanford/Wise-Anderson Protocol and no improvement!?

[MBey]

I tried to follow the Stanford/Wise-Anderson Protocol since two years more less serious but unfortunately my symptoms (lasting for more than 10 years) of a constant urge to urinate accompanied by a high frequency (~12 times per day, 2-3 times per night) didn't vanish.

Since five months my symptoms are so bad that I couldn't work any more so that I started to do the protocol really serious with the following:

- psychotherapy which helped against new muscle tension in the pelvis
- inner and outer trigger point massages alone (1 per day) and supported by a physiotherapist (1 per week)
- the relaxation methods (breathing and moment to moment) (several times per day)
- 1,5 hours of running (1 per day)
- 1 hour rebounding on a trampoline (1 per day)
- 1 hour hot bath (1 per day)

Although I've got the feeling that some tensed muscles in the pelvis and stomach are now certainly more relaxed, I have still the same symptomes as at the beginning.
Even worse, since 3-4 weeks I had to stop with inner massages and also with rebounding as I get really bad flare ups lasting 2 days.

Thus I don't know what to do any more so that I begin loosing the hope to find any release in this protocol.

Can you understand my situation and generally explain me what I'm doing wrong or why my situation didn't improved although I'm doing all what AHIP is telling us?

What can I do...do I have to wait ages to recognize any improvement?


Thanks a lot for any help!

[carld]

I would stop the running and bouncing on a trampoline every day. That to me seems like it would only irritate the pelvic region. Take it easy on your self.

Try walking everyday instead and I don't see anthing about daily stretching in your protocol or maybe yoga.

Try any accredited quercetin product supplements

Consider low doseage Elavil 10 mg to quiet the nerves and reduce frequency. Ask your doctor about it. It has helped me, just make sure you increase your fiber intake.

[webslave]

This is an area where I differ with many others. I still believe that chronic prostatitis / chronic pelvic pain syndrome has as its first and foremost symptom: PAIN. That is what it's all about, pain. Now others want to include people who have no pain but have Over Active Bladder. I disagree. I think you have OAB and that all the things you are doing may be pointless.

I have heard that some people with frequency but no pain have benefitted from the Stanford/Wise-Anderson Protocol and Quercetin, but it's anecdotal only (posters to this forum).

[carld]

In his description I see nothing noted about any discomfort/ pain/ or burning in the region??

Now for me, I have never had the pain, except from fugax proctalgia here and there, but I have discomfort and irritation. Perineum spasms and discomfort along with frequency, but that in my opinion is from an irritated prostate from tense muscles etc....I remember trying OAB meds and it made me feel worse!!!

So in this poster's case, He may have OAB???

[MBey]

Indeed the last years I had no real pain or discomfort in the pelvis, but in the beginning of this whole problem I had no OAB, but a burning in the urethra to the tip of the penis. Then this burning vanished and the OAB problem directly occurred instead.

@webslave: For me, I think it has something to do with chronic muscle tension in the pelvis since:
- examinations of the nerve functions in the bladder was normal
- I've got the feeling of a tensed pelvis and stomach
- oab drugs doesn't help
- Botox in the detrusor muscle of the bladder didn't improve anything
- isn't a increase of the symptoms after a massage a sign of a flare up?
- after running I usually get a release of the urge for several hours
- I think there are several guys who also had only urge/frequency problems and there situation improved after applying the protocol?

Webslave do you still think it has nothing to do with muscle tension?

[kevin]

At first glance this sounds to me like interstitial cystitis (note: the notion that IC is always caused by ulcers in the bladder is outdated). Overactive bladder (OAB) is a possibility too; I'd be interested to hear what urodynamics found. We don't know whether IC and chronic prostatitis / chronic pelvic pain syndrome are the same condition, or whether IC itself is one or more conditions, but I definitely see a relationship between them, even though they might not be the exact same.

The difference between interstitial cystitis and overactive bladder is the source of a lot of confusion. I have been thinking of writing a longer post at some point explaining how I see things, but I'll leave it with this for now. The two can appear very similar, since they consist mainly of urinary symptoms. However, I believe that the two conditions belong to different "clusters" of patients. To me, the differential diagnosis should be made by looking at the cluster of individual symptoms, especially using urodynamics. Here's a brief summary of symptoms that tend to be associated with each:

Overactive bladder
Positive urodynamics (detrusor overactivity)
Urge incontinence
Neurological injury (spinal cord injury/Parkinson's/MS)

Interstitial cystitis
Negative urodynamics
Pain/discomfort
Sexual symptoms
Related conditions: IBS/CFS/anxiety/food intolerances/fibromyalgia

There's a decent article on this topic here:
http://www.pubmedcentral.nih.gov/articl ... id=1832106

As for muscles, it seems apparent that the Stanford/Wise-Anderson Protocol works better on people with mainly pain symptoms, and less so for people with mainly urinary symptoms (e.g. me). However, I don't think that people with urinary symptoms have a different disease altogether. For one, I have long had a habit of tensing the pelvic floor, and still have it to this day. I also tense up during my sleep. One possibility to me is that people with urinary symptoms irritate the nerves more through their tension, whereas people with pain irritate the muscles.

These suggest to me two different patient populations, partly characterized by overactivity of the motor nerves (OAB) versus overactivity of
the sensory nerves (IC).

MBey has an interesting set of symptoms, which by the way sounds similar to mine. MBey, you mention "spasms"; what do you mean by this? Have you had urodynamics? What did they reveal? Especially because you experienced relief after taking drugs that act on the central nervous system, it sounds to me like the problem might be overactive sensory processing in the central nervous system (possibly the spinal cord). I am interested to see what further medical therapy reveals.

One thing that caught my eye is that you experience relief after running. Maybe you could try percutaneous tibial nerve stimulation (PTNS). There is a reflex from the tibial nerve (a leg nerve) that relaxes the bladder when the legs are moving, to make sure that no urinary leakage occurs when people are bouncing around. Maybe you are activating this reflex when you run, and it makes you feel better afterward. Maybe you can take a look at information on the Urgent PC device.

[MBey]

@kevin: First thanks for all your information!

So my examinations in more detail:

-cystoscopy: urethra a little bit irritated/red, bladder negative
-urodynamics: negative, except from right high bladder pressure

Additionally when I touch my urethra over the penis it feels pretty discomfort and irritated.

Certainly I also thought about IC, but the cystoscopy was negative, I've got no pain and the Botox injections in the detrusor didn't improve anything.

So this all tells me no OAB, no IC...so back to chronic prostatitis / chronic pelvic pain syndrome and Stanford/Wise-Anderson Protocol!?

Spasms is probably not the right word but in earlier times I often had a golfball feeling in my pelvis.

What do you mean with the drugs acting on the nervous system...have you read about that I took amitryptilin somewhere? I did, it slightly decreased the situation but unfortunately my libido vanised totally.

This PTN thing sounds pretty interesting. Where do you think I can get more information...what do you mean with Urgent PC device?

So all together again:
- Some irritation in the urethra
- Certainly there is still some muscle tension in the pelvis and stomach area
- Strong flare ups after inner massages

Could I help you with this additional information? What do you think I should do...should I forget the massages/Stanford/Wise-Anderson Protocol? But what else then?

[Sleeper Service]

Did you have video urodynamics? High bladder pressure is usually indicative of an obstructive disorder either at the bladder neck or the external urethral sphincter.

[kevin]

A few notes:

-Take a look at my post in your thread about how you got better after taking MDMA. I think that finding a similar but safe and legal drug is a promising avenue. What worked for me is stimulating the alpha-2 adrenergic receptors. This means that drugs like Cymbalta, clonidine, and Ritalin helped.
-Urgent PC is the commercial name of the device used for percutaneous tibial nerve stimulation. It is thought to exploit that reflex I told you about. You go in for a 30-minute stimulation session, and are expected to feel better afterwards. It usually consists of weekly treatments. The website is http://www.uroplasty.com; navigate to "Urgent PC". This might work even though sacral neuromodulation didn't. (It didn't work for me either.)
-A Botox injection into the base of the bladder/trigone might be more effective (than one in the detrusor), since that's where some researchers believe the culpable sensory nerves are located.
-IC is more of a description of symptoms (urgency, frequency, pain) than an actual diagnosis based on objective findings. Most people with IC have a negative cystoscopy. It doesn't mean you have to call it IC; this just sounds closer to IC than any other common disorder. Remember, we still haven't figured out what all these diseases are. It's possible that more exist, and we're just not defining them right. I would call what you have a sensory urgency/frequency syndrome, perhaps due to an abnormality of sensory processing.
-I don't know what to say about the Stanford/Wise-Anderson Protocol. Even though it hasn't worked for you, it does seem like something is going on with your muscles, just as is the case for me. Maybe you can try a different approach to treating your pelvic floor tension. I think I remember you saying that you're tensing up at nighttime; maybe you can try fixing that somehow. (I have that habit as well, and am doing some biofeedback and heavy-duty moment-to-moment relaxation.)

Do you notice any fluctuation of your symptoms related to sex or bowel movements? Anything else that makes you better or worse? Any other health conditions?

Let me know how you progress.

Kevin

[kevin]

Sleeper Service makes a good point. Do you have hesitancy, retention, dribbling after urination, or any other LUTS symptoms?

[MBey]

I'm going to see my urologist tomorrow to ask for a try with ritalin or cymbalta.

@kevin: Did you try the Urgent PC when sacral neuromodulation had no effect?

@sleeper: To your question with the obstructive disorder. My urologist said that my urethra is pretty narrow, probably at the external sphincter.

I have problems with hesistancy which got better by the Botox injection in the external sphincter but this also was the only improvement.

After the Botox injections in the detrusor I had pretty strong problems with retention, but they vanished almost totally after 5 months.

Bowel movements generally increases the symptoms but on the other hand I've got the feeling that a slim bowel improves my situation a bit.

Sex doesn't do anything bad or good except from the sperm that additionally irritates the urethra.

The diagnosis of a sensory urgency/frequency syndrome is surely the most precise description of my problem, but after 12 years of try and error I haven't found anything which really decreases my symptoms so that I could work again. The protocol was for me the most logical and reasonable therapy idea but what can I do when the whole PT and even now streching and running leads to more irritations?

Does it make any sense that my pelvic floor and also my stomach/abdomen feels more relaxed but the irritations and the urge/frequency even increased?

[webslave]

Mbey, you're getting better advice from others than I can give you. But 2 things:

1) Don't assume you have chronic pelvic PAIN syndrome (CPPS) when you have no pain

2) You say that the Stanford/Wise-Anderson Protocol has not helped, but bear in mind that it is very practitioner specific, in other words your PT may not be hitting the right trigger points, assuming they are there. The fact that you do have flares after internal work is interesting, and suggests that the SP may still be worth pursuing, perhaps with a different therapist (Tim Sawyer?).

[kevin]

I haven't tried the Urgent PC yet.

I don't know who you're seeing, but the following doctors are in Switzerland and would be knowledgeable about dealing with your type of problem, especially if you tell them your MDMA story.

-Brigitte Schurch
-Hansjoerg Danuser
-Bernhard Schuessler

[alprost]

Whether or not someone has pain, urinary symptoms, or a combination of both can depend entirely on which trigger points they have and where they refer symptoms to. I have had some trigger points which only refer urinary symptoms, and some which only refer pain. So, IMO if someone has only TP's in certain areas, it is entirely possible that they will only have urinary symptoms (Including a REFLEXIVE tightening of the bladder neck resulting in LUTS such as dribbling/narrow weak stream etc. These have improved markedly in me with the resolution of certain TP's). The same holds true for someone who only has pain symptoms, it depends which TP's an individual has.

Different symptoms, same underlying issue - trigger points.

This is an important point IMHO.

I would also add that, at one point, my urinary symptoms and frequency were worse than those described by the original poster.

[Sleeper Service]

Al makes a good point. If your condition is trigger point related you need to search them out.

However, I'm puzzled because you seem to have had treatment for detrusor-sphincter dyssynergia (DSD), a condition usually associated with spinal or cranial injury. It seems a bit strange that they injected your detrusor with Botox (a treatment for DSD) when it showed no sign of overactivity.

I'm also puzzled as to why the uro says that you have a narrow urethra 'probably' at the external sphincter and why he hasn't offered dilation. Videourodynamics using contrast media should show exactly where any observable obstruction or narrowing occurs.

How long ago did you have the Botox treatment? If it has helped the heistancy it may be the case that this obstruction has been resolved but that your bladder hasn't adapted yet.

If I were you I would find a really good urologist and get a full urological evaluation done again.