I’ve outlined causes and the prognosis here. This post prescribes the specific remedies.

Note: By a cure I mean having a light pad for life – a pad that is likely dry on most days. I’d personally be happy with such a remedy. From around early April 2018 I’ve been at around 10ml per day for nearly a month now. Manageable, but I’d like to see it come down to zero, if possible.

Video update at one year

The theory for the remedy

Added on 20 April 2018: By now I have a clear theory of the remedy. And that is pretty similar to the concept which underpinned my cure for RSI. THE BODY IS AN EXTREMELY DYNAMIC entity. Imagine 200 bones that would otherwise fall apart, being tied together with hundreds of thousands of muscles and nerves. The body has an EXTREMELY SENSITIVE micro-adjustment mechanism. Every force you apply interacts with ALL parts of the body (including organs) in some way or other. Everything adjusts all the time. This is totally dynamic.

So the theory that the pelvic floor must be strengthened is WRONG. We don’t need to strengthen this particularly – maybe 5 to 10 per cent. But what we do need is to totally retrain ALL muscles and nerves all around the second (remaining) sphincter. This is the focus of my DYNAMIC REMEDY, below. It is not static.  I agree that one must start off by learning Kegels, but that’s the very early stage. After that, everything must be done to FORCE the entire set of muscles in the abdomen to re-learn the new system.

I gave up Kegels pretty early in my recovery phase and have focused on downhill running which puts extreme pressure on the entire abdominal area and forces it to relearn how to manage the bladder. This is a durable solution since if one focuses only on strengthening, incontinence will re-emerge as one gets older. But if my theory is correct, then I will NOT get incontinence in old age – because I’ve totally retrained the entire body.  [More details here]

The remedy in a nutshell:

1. INITIALLY strengthen and retrain pelvic floor (Kegels) – 10 per cent of the remedy
2. Jog and/or run downhill – 75 per cent of the remedy
3. General fitness – 15 per cent of the remedy

EXPECTED SEQUENCE OF RETURN TO CONTINENCE

From my readings and (current) experience the sequence of return to continence will be: while standing, while walking on a flat surface, while walking uphill, while walking downhill, while running and while playing tennis, while coughing and sneezing. There is a significant improvement when one reaches the next stage but it one doesn’t reach 100% continence at that stage. Instead, there are phases of return to continence, such as initially 20 (up to 70) percent continence while standing/ walking, then 90 percent, and so on. Some minor leakage will occur in previous stages for a few weeks till the body masters these earlier stages.

Note, for the latter, also include yawning. Big yawns can prompt leakage. Addendum 20 April 2018: Finally, I have found that while control is getting better even while sneezing, etc., there is one posture (backward bend) which seems to open up the sphincter. Obviously I don’t do such extreme backward bend, but even a bit of this type of bend still remains to be overcome. Posture illustrated below (Addendum 3 November 2018: control during this posture is now almost 100 per cent).

Addendum 18 May 2018: Leaks are continuing in odd postures, e.g. while bending forward while standing near a hand dryer. Also while bending backward (this is getting better). And when bladder is full while getting up from bed.

Addendum 3 June 2018: It is clear that early morning full bladder is probably the last thing that’s going to get “fixed”. Other things are at least somewhat under control now. But this issue (particularly during sleep) is clearly the last thing that will resolve. Addendum 3 November 2018: I’m almost reconciled to the issue that one can’t truly prevent mild a rare episode or two of bedwetting during dreams/ sleep. This happens very rarely but it is something which a single sphincter does not appear to be sufficient to manage.

• slides here. At three months (6 November) I’m mostly continent while walking uphill.

Preliminary step: Use pads to support biofeedback and measure urine leakage 

Sanjeev: The dripping is an invaluable biofeedback mechanism. The brain needs feedback to learn.

“Whatever you do, do NOT wear an incontinence device with an attached bag, a condom catheter, or clamp! If you use any artificial device, you will hurt yourself in the long run. You won’t be able to recover urinary control, because you won’t develop the muscle control you need. Until your urinary control returns completely, wear a pad or disposable diaper.” [Source]

Note: I tried Jockey washable underwear with pad and would not recommend it. Its absorption capacity is ordinary and leaves a layer of sticky stuff around one’s legs.

Note: If AFTER 18 months of trying, control is limited, THEN consider this: Sayco Dribblestop. It costs around $130 in Australia (Source) – it is worthwhile also for short social events. THIS too can help for short intervals: ‘Conveen Sheath ‘ connected to a ‘Conveen Active Thigh Bag’ [Source] – shop  Note, I’ve recovered most continence well before the 8th month, so this is not relevant to me.

STEP 1A: MEASURE THE PADS

This is a crucial step to track progress. I track my progress on this Google spreadsheet.

Measurements at the beginning are not completely comparable with later measurements. In the earlier days one visits the toilet excessively, so initial measurements are actually lower than they would have otherwise been. As one develops the capacity to hold more and for longer, the fuller bladder leads also to heavier leaks – but this is a good thing. Measurements also vary by one’s level of fitness or wellness. If one is sick and sneezes a lot, there will be heavier leakage. In my case, the later stages have involved extreme exercises, so these measurements are larger than they would otherwise have been.

Step 1: After six weeks, up to three months: KEGELS – 10% of the solution

Sanjeev: There are as many recommendations regarding Kegel exercises as there are physios. The following is based on my own learnings, experience and recommendations.

THEORY OF THE KEGELS

The pelvic floor is made of slow twitch voluntary muscles that can be trained to work continuously. For the heavier workload they have to do after surgery, these muscles first need to be strengthened, THEN retrained. Slow twitch muscles do not need to be exercised up to 100% and it is sufficient to make them practice at around 30% of their full capacity. Fast twitch muscles, on the other hand, need to be made much stronger so they can react quickly to situations. These should be practiced at 100% of capacity. When you start these excessive exercises you have to consciously hold the pelvic floor at 10 to 30 per cent of its capacity. But with dynamic exercises and running downhill (see section below) the body does this automatically and one has to do nothing, absolutely nothing. [Watch this Craig Allingham video from around 2 minutes onwards]

USE THE RIGHT MUSCLES

“About five years ago, a Cochrane Review publication argued physiotherapy treatments for men with incontinence after a prostatectomy were unsuccessful. UQ researchers believe their studies reveal why the treatments were not working – older studies have been using assessments that measure the wrong muscles, those designed for fecal continence not urine continence.” [Source]

“Instructions that focus on the muscles that are best for controlling continence include – stop the flow of urine, shorten the penis. … We’ve done experiments that show that those instructions actually make the right muscles contract.” [Source]

“There is data to support this recommended regimen – A meta-analysis of randomized controlled trials concluded that pelvic floor muscle training with biofeedback early in the postoperative period immediately following removal of the catheter may promote an earlier return to continence (Hunter 2007).”

DO KEGEL EXERCISES [DETAILS HERE]

STRENGTHENING IS NOT ENOUGH [HERE] “exercising the right pelvic floor muscles is unlikely to be the answer for every patient with incontinence after a prostatectomy, but it is likely to be effective for many.” [Source]

OTHER MUSCLES: “men have a series of other muscles which can also control continence, but men have to train to use them in a new way.” [Source]

DYNAMIC: HOLD 50 PER CENT WHILE WALKING AND MOVING AROUND

Sanjeev: This step should be started after 8 weeks from surgery (after recovery from surgery) and after the pelvic floor has been significantly strengthened. The underlying idea is to train the PV by overloading it in stages. Dynamic use means using the pelvic floor all the time – at a lower intensity. Thereafter, the muscles learn to control involuntarily. 

One doesn’t need to be a bodybuilder to play good tennis. The key is to use the muscles correctly. Keep pushing the muscles to the next stage of ACTIVITY.

“What we propose is that if we train men to use these muscles differently after prostate removal, that is, aiming to get men to use these muscles to be active much of the time, this may be able to improve recovery of continence.” [Source]

Whilst walking – try lifting your pelvic floor about 50% of maximum squeeze. [“One exercise I did that wasn’t prescribed, but seemed to help was tightening while walking. I walk a lot, so I’d do 10 steps tightened and ten relaxed, or 15 and 15. If you overdo the walking, especially at the beginning, you’ll backslide for a while.” [Source]

ADVANCED – WHEN THE BLADDER IS FULL

Kegels are initially performed with a nearly empty bladder. As one gets stronger, a more full bladder must be used. Finally, a COMPLETELY FILLED bladder is challenged through Kegel exercises. This also is part of training the bladder to hold more.

STEP 2: After three months: JOG/RUN DOWNHILL – 75% of solution

This, in my initial view, is the best way to overload the pelvic floor and retrain abdominal muscles. Of course, this can only be done 12 weeks after surgery, when the body has fully recovered from the surgery.

The principle here is to perform an activity in which you fail 90 per cent of the time. What jogging/ running downhill overloads the PF muscles but also massages and to challenges a large number of other inner organs. As Peter Dornan notes in his 2015 Sports Health article, “there are seven command centres and thirteen reflexes which control bladder activity”. KEGELS WILL ONLY ACTIVATE A VERY FEW OF THESE. YOU NEED MUCH STRONGER AND DIVERSE EXERCISE AFTER THE FIRST THREE MONTHS.

Initially, running is not safe and may cause injuries. A gentle jog is best. Going zig zag, suddenly stopping and then starting, lunging sideways, karate kicking, etc. can add to the pressure on various inner muscles and body parts.

I found a significant IMMEDIATE improvement (experienced the next day) through this method. I’m still at three months and have just started this.

In my view the reason why running downhill works very well is that the body has a natural tendency to control urine flow. Various muscles and body parts get activated to prevent leakage while running downhill. This activation and rewiring of these muscles and nerves/ blood vessels ensures there is much better control over simpler things like walking on a flat surface.  Even things like walking downhill become much easier and continent.

The transitional period from incontinence to continence is particularly unpleasant. When one is totally incontinent the leakage is all the time and is not noticeable as it is constant. But during the transitional phase there is a nagging sensation when it leaks.

2A: Add coughing exercise.

This one involves holding the pelvic floor muscles while coughing.

Step 3: GENERAL FITNESS/ CORE – 15% of the solution

I saw a dramatic decrease in incontinence through running/jogging downhill WITHOUT reducing any weight. Therefore I do not believe that strengthening kegels or reducing weight have anywhere close to the curative effect of jogging downhill.

This includes crunches, plank, weights, and extreme Pilates. And the bike. DO THE PETER DORMAN EXERCISES WHICH GO BEYOND THE KEGEL EXERCISES – html HERE.

DO THE STANDING BIKE 

“One month after having the robotic prostate removal I started a standing 20 minute per day spinning bike program.( Since my Dr. wouldn’t agree to let me sit down on the spinning bike for two more months). Within 3 days all my leakage stopped, my stream went from sporadic to full and I stopped wearing pads!I asked a massage specialized and she said I had strengthened muscles around my bladder and urinary system therefore helping my post surgery problems 10 fold. I am now in my 4th week of standing spinning and I feel like a new person. I only urinate 2 times a night instead of 5-6.” [Source]

PELVIC YOGA

“Yoga, I found, has plenty of exercises designed to strengthen the muscles of the pelvic region. Further, it’s a way of toning the muscles without the heavy lifting and the physical exertion that a patient recovering from abdominal surgery ought to avoid, and it offers an effective, long-term way of helping the body to recover.” [Michael Korda in his book, MAN TO MAN]

DYNAMIC PELVIC FLOOR EXERCISES

See this: https://www.youtube.com/watch?v=sdp_cK6QZo4&feature=youtu.be

The physiotherapist Stuart Doorbar-Baptist, in his talk, explains this very well.

NOT A SOLUTION: 

I read somewhere that “Obesity has a negative effect on incontinence so you should reduce your weight.”

Apparently, “At 6 weeks after surgery 59% (405) of men were incontinent, defined as any pad use. At 58 weeks after surgery 22% (165) of men were incontinent. At 58 weeks incontinence was more prevalent in men who were obese and physically inactive (59% incontinent). … The best outcomes were in men who were nonobese and physically active (16% incontinent).”  [source]

“sedentary men had the highest rate of long-term incontinence, at 41 percent. Active, non-obese men had the lowest rate, at 16 percent.” [Source]

Other studies (including in women) show similar results (source).

While I have been active, particularly after three months, I’VE NOT CUT DOWN WEIGHT, even though I have scope to trim down by 20 kilos. This shows that WEIGHT per se is NOT an issue in continence.

UNDERTAKE AS MUCH GENERAL EXERCISE AS POSSIBLE, TO SUPPORT NORMAL RECOVERY

I’ve compiled the relevant resources here.

LAST RESORT: SURGICAL OPTIONS

IF INCONTINENCE CONTINUES

A) GET TESTS 

“Diagnostic studies are performed to evaluate incontinence after a history and physical exam aer performed. Cystourethroscopy is used to evaluate the integrity of the external urinary sphincter under direct visualisation. A voiding cystourethrogram looks for anatomical abnormalities, while urodynamic studies evaluate physiology.” [Source]

B) AFTER 18 MONTHS CONSIDER SURGICAL OPTIONS

If after 18 months things have not stabilised to a satisfactory and manageable level, additional surgery could be considered. Details here. These are ABSOLUTELY FINE, and will FIX the issue.

SOLUTIONS I DON’T AGREE WITH

Sanjeev: These things are recommended sometimes, but do not address the root cause and lower the quality of life. I reject such “solutions” outright.

CUT DOWN FLUIDS AND COFFEE

“Once the catheter is out, you’ve got to slow the pace (of fluid intake) considerably. Avoid drinking excessive amounts of fluids, and stay away from caffeine in all forms- coffee, teas, and even soft drinks.” [Source]

[Note by Sanjeev: In my view this recommendation needs to be balanced by the need to drink water to re-activate the bladder’s muscles which have been tightened and made lazy after putting in the catheter. The bladder needs practice in holding urine. That is part of bladder training. Also one needs to keep oneself hydrated. I am therefore not taking this particular recommendation too seriously. I also believe my body must learn to get used to tea, alcohol, etc. in the manner I was used to prior to surgery. I am moderating but not stopping.]

CONSIDER TAKING DECONGESTENTS

“If you have stress incontinence, there are several medications that may help. For example, decongestants, used to treat a stuffy nose and cold symptoms, work by contracting smooth muscles in the nose. The urethra is surrounded by this same smooth muscle. Thus, if you do not have high blood pressure, you may benefit from taking a short-acting decongestant, such as pseudoephedrine (Sudafed), or a long-acting agent combines with an antihistamine, such as a loratadine and pseudoephedrine (Claritin-D). However, some of these drugs can cause drowsiness and a dry mouth, and some men find those side effects worse than the urinary leakage itself. Another drug, called imipramine (Tofranil), works through a two-pronged approach. It relaxes the muscle in the bladder and also tightens the muscle tone of the external sphincter. This drug, too, can cause drowsiness and a dry mouth; however, some men find that if they take just one tablet at night, it last well into the next day. (Otherwise, the usual dose is 25 mg up to three times a day.) [Source]

LEARN COPING MECHANISMS AND FOCUS ON IMPORTANT THINGS

“There are millions of people who wished they only had a few piss-pads to change during the day instead of being confined to crutches,a wheel chair, a hospital bed, etc. for the rest of their lives. Don’t sweat the small stuff, JH, this too shall pass.” [Source]

“Once the integrity of the urinary system is upset, it can seem like pot luck whether continence is preserved (the odds of dryness are good but that does not help the men who are on the “wet” side). PFEs (Kegels) usually are the first stop and have been my particular bète noir. I was still being given the Kegel message, even after a physio admitted that my pelvic floor was like a Bulldog Clip. If Kegels are being done, and continence is regained, then it is assumed that they are the reason without looking at other factors, for example, would continence have been regained by that point anyway? It is impossible to say.

“In my mind, the issue is that having looked at and tried the various “solutions” (in inverted commas because some are heading for snake oil), the biggest hurdle is learning to reprogram the brain to stop incontinence from dominating life. After all, cancer has been beaten.

“If I could postulate an approach, based on my experience, it would be to try all the reasonable remedies first (i.e. avoiding snake oil, and there is a lot of it out there). If the remedies don’t work, try the mechanisms for coping with and managing incontinence so you can concentrate on more important things.” [Source]

“As handicaps go, incontinence, I discovered, is comparatively minor. The only person who is likely to be aware of the problem is oneself. It can be lived with.”[Michael Korda in his book, MAN TO MAN]

“At nine months, the incontinence problem has been reduced to a level I can live with, most of the time, bar the occasional accident. I’m not happy about it, but I’m not miserable, either.” [Michael Korda in his book, MAN TO MAN]

“recovery comes, in the end, from the dawning realization that cancer was an episode in one’s life, neither the end of it nor, more important, the whole of it.” [Michael Korda in his book, MAN TO MAN]

“most prostate-cancer patients who receive treatment early enough live out a full actuarial life span. The numbers are on your side.”

USE PRACTICAL REMEDIES TO RESUME NORMAL LIFE

E.g. Afex system:

This is not very expensive.

“I can’t begin to tell you how good it is. No pads! It lets you do just about anything, and doctors don’t seem to know about it, since it is new. It’s comfortable. I think I’d be in an institution by now, after 10 months, without this. Use a little vaseline around the rim, and empty the bag with the valve at the bottom as needed.You just need a few underwears, bags, and the recepticle.” [Source]

Unclear: STEM CELL TREATMENT?

Stem cells have been found to fix this issue by regenerating relevant tissue – THIS DOCTOR DOES IT. (Michell Kaye). HOWEVER, THERE ARE RISKS THAT CANCER COULD COME BACK.

See this blog post for details.

KEYWORDS (Ignore)

Treatment, recovery, overcoming incontinence, action plan, therapy, continence management, regaining continence, return to continence, tips, advice, guide, robotic prostatectomy,