The surgeon in my case DID cause quite a terrible injury (sub-meatal urethral stricture) during the radical prostate surgery which was conducted on 7 August 2017.
I needed an emergency urethrotomy first (on 11 September 2017). That did NOT work and the stricture came back very quickly. He wanted me to use dilation but I did not agree, given the literature does not support it.
Fortunately, my surgeon was good enough to refer me to another surgeon who specialises in urethral strictures and he managed to conduct a 1st stage penile urethroplasty and cystoscopy on 11 October 2017. That managed to fix the sub-meatal stricture and I was able to return to work more or less regularly after mid-November.
The stuff below is my research conducted starting 20 August 2017.
RESEARCH August 20 2017 PRIOR TO SOLUTION
Removal of catheter after prostate surgery was very painful in my case. I’m also having continuing severe pain inside the tip of my penis – making it almost difficult to urinate and even walk. It is now nearly two weeks after surgery.
COULD BE FROM THE CATHETER:
“burning in the urethra could be as a result of the catheter or having urinary tract infection.
the best thing is first to check the urine and make sure that there is no infection… ” [Source]
My research has suggested that catheters CAN injure. These are called IATROGENIC INJURIES (i.e. caused BY INSTRUMENTS). “Endourological procedures are the most common cause of iatrogenic ureteral injuries. When identified at injury and treated properly such injuries seldom lead to loss of renal function. [Source]”
Iatrogenic Trauma: Iatrogenic urethral injuries caused by instrumentation are by far the most common cause of urethral trauma. Urethral ischemic injuries related to cardiac bypass procedures are not infrequent and can result in long and fibrotic strictures. ” [M. Hohenfellner · R.A. Santucci (Eds.) Emergencies in Urology]
However, it also seems to be the case that catheter trauma would lead to bleeding and clotting. There is none in my case.
“In the absence of blood at the meatus or hematoma [a solid swelling of clotted blood within the tissues], a urological injury is very unlikely” [ibid]. Note that “The amount of urethral bleeding correlates poorly with the severity of injury, as a mucosal contusion or small partial tear may be accompanied by copious bleeding, while total transection of the urethra may result in little bleeding (Antoci and Schiff 1982).” [ibid]
COULD BE REFERRED PAIN FROM THE SURGERY
“I’m seven months post-op from a robotic RP. After walking or standing for a period of time–30-60 minutes is typical–I slowly develop a burning pain in the tip of my penis. … I just about always have burning during urination, too. That burning typically lingers for a few minutes after urination. ” [Source]
“I believe that’s [pain in the penis] common, but varies from person to person. My pain in the tip of my penis lasted 2 months.My doctor said to take advil and stay off my feet when possible. You’re right, sometimes the pain was excruciating. The good news is it goes away.” [Source]
“I had penile pain up to 8 mos post surgery.” [Source]
“I still have a slight sting/burn on occasion , my surgery was sept 19th 07” [one year earlier] [Source]
“I did have stinging at the tip but it slowly diminished over time.” [Source]
“It is getting better very slowly. This is week 4. It’s like watching grass grow” [Source]
“doc felt that it may be a scab or existing bruise in urethra..dont think it UTI or a strciture as the urine is clear and flow strong. doc suggested to wait and see for improvement…aggressive approach may to put a scope in the penis and see the problem and also do CT scan..but that will only irritate the urethra more..” [Source]
“Lots of guys complain of that pain. My theory is that in a lot of cases it is caused by irritation from the stitches that were used to stitch the urethra to the bladder neck. Those stitches will be attacked by his body as he heals and absorbed but that process can take months and months and in the meanwhile they can be irritating. His problem could also be some sort of entrapment of the pudendal nerve in the area of his surgery. The good news is that the pain usually goes away eventually.” [Source]
“It’s possible that ibuprofenmight help. Your discomfort is caused by irritation and/or inflammation in your internal stitches and ordinary pain killers might actually help, especially those that are anti-inflammatories as well. If that doesn’t work, you might ask your doctor if he minds if you try some pyridium to see if it helps with your discomfort. It’s a urinary analgesic that is available over the counter in the US and Canada.” [Source]
One GP (doesn’t sound like one) has recommended Amoxycillin [Source]
OTHER DATA RE: IATROGENIC TRAUMA
(watch below at 25:05)
Mechanism of injury include: blunt trauma such as MVA or falls, penetrating injuries, straddle injuries and Iatrogenic injury like traumatic catheter placement. Posterior urethral injuries commonly associated with pelvic fractures. Anterior urethral injuries come from blunt trauma to the perineum (straddle injuries)
I’ve outlined causes and the prognosis here. This post prescribes the specific remedies.
Note: By a cureI 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:
INITIALLY strengthen and retrain pelvic floor (Kegels) – 10 per cent of the remedy
Jog and/or run downhill – 75 per cent of the remedy
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 yawnscan 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 invaluablebiofeedback 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.
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 largerthan 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).”
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]
“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]
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
“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.”
“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]
It is now the 11th day after surgery. I’ve been doing a bit of walking within the house and a tiny bit outside. But now I’m ready to do much more. [In addition to the list below, also seethis]
GIVE INTERNAL INJURIES TIME TO HEAL
It takes at least 6 weeks for a firm scar tissue to develop in both your wound and in the areas where you had surgery. If you over-do before that time, you may disrupt thedelicate connection between your bladder and urethra. This could lead to long term problems with urinary control or a hernia in the incision. [Source]
Before beginning any exercise program, talk to your physician about adapting a regimen to your level of health and fitness. If you participated in vigorous activity, such as running, before surgery, you may be able to resume your fitness plan after giving your body plenty of time to heal. [Source]
SHORT WALKS, MANY TIMES A DAY
The foundation for this program should be frequent short periods of walking. Depending on your age and general condition of health, it may be enough the first week to walk 6 or 8 times for 5-10 minutes inside of your home. See how you feel but each time try to go a little farther. As you feel comfortable or as you need to get out of the house, move your walks outdoors, at first to the back yard. Then walk the block. In time you will be walking a block then two then a mile and so forth. Remember at first to keep the walks short and do them several times a day with rest in between. Use the rest time to read, relax, and learn something new. [Source]
From week 3, longer walks up to 90 minutes + even longer after 5th week. So also treadmill in the gym.
Go slowly and move into these smoothly and easily.
Stretch on an empty stomach. Wait at least 2 hours after a meal
Wear loose fitting clothing
Practice in a warm room after warming up the muscles, for instance, after walking.
Do not hold your breath during the exercises but breathe evenly throughout the stretch.
Standing in place. First check your posture by standing against a wall. If standing correctly your buttock, shoulders and back of head should be pressed against the wall. Straighten your back and legs and feel the stretch. BREATHE. Gently tighten your stomach muscles by pulling them in to the wall. Stop if you feel any discomfort. Do this several times, for a couple of minutes each time. As you feel able, you can do the same stretch on the rug or floor.
Bending. With time you will be able to work on bending more during the stretch. A modified toe touch is performed by starting in the standing position and gently bending your neck then shoulders forward. Stop if it hurts, but do a little more each day. The object is bending and loosening your back and shoulders, not to touch your toes.
Simple yoga positions to build your muscle strength. Get down on your hands and knees on a comfortable surface like a rug. Concentrating on your lower back, gently arch your back like a cat stretching. Your hands and feet should not leave the ground. Work to feel each vertebra in your spine move upward. Breathe and then relax. Now bend your back downward like a saddle-worn horse, again feeling each vertebrae move toward the floor. Breathe and stop if any pain or discomfort. [Source]
“Do not lift over 20 pounds for the first 3 weeks.” [Source] (Some people recommend even less, such as 5 pounds!)
Best to start after 8 weeks (in my case from 7 October – I.E. DURING THE ENTIRE MONTH OF SEPTEMBER, DO NOT LIFT WEIGHTS IN THE GYM OR ELSEWHERE
“It was not until approximately three months after surgery, however, that I felt that my full strength had returned.” – take it easy – tennis can wait three months – start it in November
Chanced upon this video which provides an EXCELLENT causal analysis of what might be happening with heavy incontinence, and how to fix it.
I’ve had heavy (100 per cent) incontinence since the catheter was removed. I was very impressed with his argument that the bladder needs to be kickstarted by filling it up, in order to get the external catheter to activate. I’m sure in that lies a key solution to my case.
See also his paper: “Having low BMI and being seen pre- operatively predicted motor skill attainment, accounting for 46.3% of the variance. Significantly more patients trained pre-operatively acquired the skill of pelvic floor control compared with patients initially seen post-operatively (OR 11.87 95%CI 1.4 to 99.5 p = 0.02)”.