Sure cure for incontinence after prostate surgery

I’ve outlined the causes and prognosis here. This post prescribes the specific remedies. Any specialised details (e.g. Kegel exercises) are linked separately.

One thing is clear from reading the literature and listening to experts on Youtube – this issue is 100 per cent curable – in one way or other. By cure I mean having the need to wear one light pad for life – that is likely to be dry on most days. I’d be happy enough with that solution. Now that cancer has been killed, I’m willing to settle for a reasonably good incontinence solution. Perfection is not my goal.

SOLUTION/ REMEDY/ CURE

STEP 1: WEAR ONLY PADS/ NAPPIES, NO OTHER DEVICE!!!

“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: 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

STEP 2: TRY TO STOP URINE FROM FLOWING INTO THE TOILET/CUP FOR HALF AN HOUR

Note, Kegel exercises plus this exercise are supplements to each other. I got this advice from the internet but I’ve modified it into the following steps based on experience.

MY RECOMMENDATION:

  1. Stand for five minutes over the toilet bowl, preventing any outflow. Thereafter let go. If you are successful, then progress to 10 minutes, then 20 minutes, then 30 minutes – three times a day.
  2. Once successful while standing THEN do the walking bit that’s recommended below. In my case there is (at the moment) no way to control dripping while walking. That’s an advanced step for the future.

“take all clothes off below the waste, get a stirophome cup (coffee cup) & hold it under your penis. Walk around the garage or house for 2 hrs/day total. Do the walking at three separate times during the day.  Does not want any drops in the cup.  You will not believe how quick you can isolate the muscles with this method.  It took me about one day to figure it out. By the way, do not take a leak right before you start walking.  A full bladder will get you there quicker.” [Source]

“I strip from the waist down & walk around the house or garage for 2hrs/day holding a stirofom cup under my penis. Done at three different times during the day. My Dr. does not want a drop of leakage by next Tuesday. I walked 6 mi. today & only a couple of drops. He says there is a hugh difference between total continence & just being continent. He means continence during golf swings, walking, running, sneezing, coughing, etc. Seems to be an expert in the field. One other thing, do the cup routine with urine in the bladder. You will not believe how quick you will isolate the proper muscles for continence. [Source]

“The idea is to reteach the body how to hold urine…the cup catches the urine becasue obviously this isn’t going to be a dry excersise. I had given Stan’s idea to a dear friend who had his cath out one week ago and today he’s back at work wearing a light pad. He too dripped like a leaky faucet but on about day 4 his suddenly, greatly improved. My guess is he finally found the right muscles he needed to strengthen….which is the idea behind the cup method. Any cup will do. Foam you can just throw away is all.

The goal is to teach himself just as though he had to learn all over again to “hold it” as it becomes natural, just as it does when we’re kids. The right muscles are as though he’s sucking the perineium from the floor of his pelvis…exactly like we (women) do. No butt muscles should be sucked up with it nor the scrotum…only the perineium thus the bladder. He’ll know he hit it because his stream shold sloow down and hopefully even stop! Holding the urine is a trick but that’s the goal. Less and less should be in that cup. The bladder does have a tendency to feel fuller exactly the same way women who do kegels experience. Holding for a count of 10 then letting go…this pattern goes on for a total of two hours a day and done while walking around or standing. Of course it may be necessary to relax if he gets tired or stop until later. Each and every time he goes the restroom to go pee, he needs to practice… stop-hold a few seconds and start again a couple of times just to get that muscle trained to take over.

My friend did this spit into 3-4 different times each day until he had figured out how to hold his own urine. Didn’t take him long after he finally figured out the goal was to reteach his body to do something that’s been normal for over 50 years.” [Source]

The above recommendation is similar to this one: “my doc, out of a university hosp in the USA midwest, has a brand new way to do kegels. Take it for what its worth for I am trying it tonight. I stop all liquids early in evening around 830 or 900 p.m. I then do kegel and hold for 3-4 minutes and then rest same. I am to do 5 reps at first and then build to 10. I never heard of it this way before.” [Source]

STEP 3: WORK OUT HOW FIT YOUR PELVIC FLOOR MUSCLES ARE

“Quick Test (Rapid Response Test) 10 quick PFM maximal contractions timed – under 10
seconds for 10 contractions = better chance of continence post op” [Source]

What this is saying is that your ability to rapidly contract PFM muscles is a good predictor of the length of your incontinence.

FURTHER: “Sustained Endurance Test : one endurance maximal PFM contraction to point of
exhaustion, maintain breathing. Contraction length 60 seconds = better change of post op
continence”

This means your ability to sustain a single contraction for up to 60 seconds is a good sign of strength.

STEP 4: DO GENERAL KEGEL EXERCISES [DETAILS HERE]

Contract your pelvic floor muscles > Hold the contraction for two or three seconds, then relax > Repeat 10 times > Do this three times per day. “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).”

“Kegel exercises the deliberate tightening or clenching of the pelvic muscles. Performed regularly, they tone and strengthen the external sphincter, the rings of muscles responsible holding in urine.” [Source]

“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]

MAKE SURE YOU TRAIN 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]

USE THESE MUSCLES ALL THE TIME

“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]

DEVELOP “THE KNACK”

“Every time the pressure in your abdomen increases you are potentially pushing urine out of the bladder. Identify the activities that cause urine to spurt out such as coughing, standing up or lifting, and tighten your muscles first to prevent urine escaping. Practice this control until it is automatic. This is called ‘the knack’.” [Source]

USE PELVIC FLOOR MUSCLES THROUGHOUT THE DAY

You should also try to use your pelvic floor muscles throughout the day. Some examples of when you could use them are:

  • 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]
  • When you feel the urge to pass urine – squeeze your pelvic floor to hold on until you get to the toilet.
  • After you have passed urine – tighten your pelvic floor, which may help prevent the embarrassment of an after-dribble leak of urine as the squeeze expels the last few drops of urine from the urethra.
  • After opening your bowels – tighten around your back passage. [Source]

BE AWARE THAT THIS EXERCISE DOESN’T WORK FOR EVERYONE  [See MY POST 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]

HOW MANY? “Do the Kegel exercises, and call me back in three months.” He dismissed both Dr. Walsh’s prohibition against doing Kegel exercises and the usual recommendation of doing a half a dozen of them two or three times a day. His patients did them by the hundreds, in series, and the relaxation between each contraction, I should remember, was as critical as the contraction” [Michael Korda in his book, MAN TO MAN]

STEP 6: DO PELVIC FLOOR EXERCISES WHEN YOU GET THE URGE

When possible, use PFEs to defeat the urge to urinate. This will both improve muscle tone and do bladder training at the same time: “responding to the urge to go with PFE’s will satisfy the urge — until it next occurs. Rather than get up several times at night, do your PFEs, roll over and go back to sleep — It does work !!! Typically, incontinence may be a matter of discipline. I can get up 6-times per night or once.” [Source: Prostate Problems Mailing List]

STEP 5: DO THE STANDING BIKE EXERCISE

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]

STEP 6: 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]

STEP 7: WALK A LOT

“Some people feel like walking helped them as much or more than Kegels. Indeed I saw my first big improvements after returning from a tour in Europe (about 3 months after surgery) where I was forced to walk a lot every day, often after an hour or more bus ride, and often trying to find seemingly nonexistent bathrooms”. [Source]

“My surgeons instructions were to walk 3 miles a day. I’ve been walking 2 miles, and just today upped it to 2.5. I always assumed the reason for walking was to get back to “general good health” but from some of the posts here, it sounds like some of you think the walking helps continence issues.” [Source]

 

STEP 8: DO THIS EXERCISE WHILE URINATING

“Every time you urinate, do it standing up. You can’t practice the following exercises, which strengthen the external sphincter and speed up your recover of urinary control, while you’re sitting down.

Start your stream, and once it’s in full force, stop the stream by contracting then muscles in your buttocks– not your abdominal muscles, not the muscle up in front around the penis. Tighten your buttocks; imagine you’re trying to hold a quarter between your cheeks. Hold the urine back for five or ten seconds, and repeat as many times as you can. Note: Perform these exercises only when you’re urinating; if you keep contracting these muscles throughout the day, you’ll overdo it. The sphincter tires easily, and you’ll end up wetter than you would be otherwise.” [Source]

STEP 9: RETRAIN THE BLADDER AND AUTONOMOUS CIRCUITRY

“Bladder training which consists of scheduled bathroom trips at specific times to retrain your bladder” [source] One of my physios has suggested I set up a schedule of (say, 1 hour initially) after which I go to the toilet, regardless of what I’ve been doing. Once this is set up, thereafter extend to 2 hours etc.

==

“When you were about 2 years old, your brain had to learn what the signals were that your bladder was full or how to stop and start the flow of urine and now, post-op you have to learn the same thing over again. It sounds like you are almost there but your brain still isn’t automatically tensing the muscles as you start to move so you have to continue making it a conscious effort until it becomes habit again.” [Source]

“Go to the toilet when your bladder feels full. Don’t get in to the habit of going just in case… After prostate surgery you may find that you do not experience the sensation of a full bladder. The sensation of a full bladder will gradually return as you are able to hold on longer. It is important to practice holding on to increase the amount of urine your bladder can hold.” [source]

RETRAIN THE BLADDER

“Bladder retraining helps you to begin to hold more urine for longer periods of time. It is possible to train your bladder to do this by gradually increasing the time between each visit to the toilet.

“You must try and resist the messages that your bladder sends to you telling you that you need to go to the toilet. If you continue to respond to those messages and go to the toilet each time you feel the urge to go your feelings of urgency/frequency will continue and possibly get worse.

“Resisting messages from your bladder will not be easy. When you listen to the messages and relieve yourself, you find immediate relief – but of course it is only temporary because you will start feeling uncomfortable again after only a very short time. This cycle of discomfort, even panic, followed by brief relief is very hard to break. You need to be strong and focused. Try and empty your bladder after you experience feelings of urgency. Gradually increase the amount of time you wait before you empty your bladder again. You will need to be patient and not be put off if you have accidents and failures, especially at first. You will feel rather silly, living your voiding schedule by a stopwatch, but very often this method works and can make your life a great deal easier. [Source]

“Practice good toilet habits to prevent bladder and bowel control problems. Go to the toilet when your bladder feels full. Don’t get in to the habit of going just in case. After prostate surgery you may find that you do not experience the sensation of a full bladder. The sensation of a full bladder will gradually return as you are able to hold on longer. It is important to practice holding on to increase the amount of urine your bladder can hold. [Source]

STEP 10: BIOFEEDBACK

[Note: In my view, the “walking around with cup” exercise above is a kind of biofeedback mechanism]

In a previous study13 on cases submitted to RP, we compared the benefit of the early combined use of functional pelvic floor electrical stimulation (FES) and biofeedback (BF) with PFMT.  Our analysis showed that the early (7 days after catheter removal) noninvasive treatment with FES/BF has a significant positive effect on the early recovery of urinary continence (at 4 weeks 63% continent with FES/BF vs 30% with PFMT) after surgery, also maintained in the long term (at 6 months 96.7% continent with FESþBF vs 66.7% with PFMT).

” I would need an anal EMG sensor and a portable EMG “home trainer” unit. The idea, as he described it, involved placing the anal sensor, which was attached by wires to the EMG unit, in the rectum. It was then possible to isolate exactly the muscle groups that needed to be exercised and carry out these exercises specifically. In short, while most men doing Kegel exercises couldn’t be sure that they were doing them effectively, by means of biofeedback you could ensure that you were reaching exactly the right muscles and exercising them correctly, and you could actually measure progress scientifically, instead of relying on the vague notion that you did the exercises until you got”

STEP 11: USE PENILE CLAMP FOR BLADDER TRAINING

“In cases of severe UI after 3 months Jo suggests use of penile clamp for bladder training worn up to 12 hrs per day (not during sleep) 6 days per week o 4 to 6 weeks as needed and reintroduce pads (should be down to 1-2 by then) to Void every 1.5 to 3 hrs” [Source]

STEP 12: Extracorporeal Magnetic Innervation (ExMI)

“ExMI technology induces nerve impulses, which cause muscle contractions and increase circulation.” [Source]

“patients were seated fully clothed in a Neocontrol chair with a magnetic field therapy head in the seat. Treatment sessions were for 20 minutes, twice a week, for 6 weeks. … ExMI offers an alternative approach for the treatment of urinary incontinence. ExMI therapy is effective for both stress and urge incontinence. The best results are achieved in those patients who use no more than 3 pads a day and have had no prior continence surgery.” [Source]

BUT this may not be effective: “This study found no evidence that static magnets cure or decrease the symptoms of urinary incontinence.” [source]

STEP 12: 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.]

STEP 13: 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]

[Note by Sanjeev: I am hesitant to try this without my surgeon’s recommendation. I’ll talk to him when I met him at the 6 week mark. I think the idea is to allow NORMAL recovery first, before dabbling with medicine.]

STEP 14: CUT BODY WEIGHT

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

“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)

UNDERTAKE AS MUCH GENERAL EXERCISE AS YOU CAN – TO SUPPORT NORMAL RECOVERY

I’ve compiled the relevant resources here.

AS PART OF THIS, START THE PETER DORMAN EXERCISES WHICH GO BEYOND THE KEGEL EXERCISES

STEP14A: SURGICALLY REMOVE FAT

“decrease in incontinence rates after successful bariatric surgery. In patients who have lost between 26 and 29 percent of their body weight, significant improvement in the bladder control was noted. It was found that the more weight that was lost, the better the improvement was noted.” [Source]

STEP 15: IF THIS CONTINUES, THEN GET PROPER TESTS UNDERTAKEN

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]

STEP 16: 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]

STEP 17: 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.

STEP 18: 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.

sabhlok

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