Dear Readers,
I would like to share with you my experiences of coping with severe incontinence after my RARP.
Please note the following information:
- These are my own experiences, which certainly cannot be transferred 1:1 to other affected people, but they may be of help to you
- I do not give any medical recommendations, but only report on my own experiences
- I make no claim to "correctness". You are very welcome to share your experiences, especially if they are completely different from mine!
... So, here we go ...
I am Henrik:
- Age at PCa diagnosis: 55 years
- PSA preoperative: 4ng/ml, postoperative: 0.04
- RPE with DaVinci and bilateral nerve sparing on 17 June 2024
- pT2c pN0 (0/20) M0 L0 V0 Pn1
- Gleason: 7b
- Additional pathological findings: cribriform pattern, intraductal carcinom (well, s*** .....)
- After RPE: Total incontinence
... and by "total incontinence" I also mean total incontinence: after the RARP I needed up to 10 (ten!) large pads a day, did all kinds of pelvic floor exercises, weight training, followed tips ...
No improvement for many weeks! Minimum 8 pads, usually more. I stuffed a bin liner full every day and didn't know where to put it ... but there are some kindergartens in the neighborhood - oh look, they don't have their garbage cans locked ...
I had a fairly typical situation:
- Lying down: continent, even when sleeping
- Sitting down: Continent (well almost ...)
- But: Immediately after getting up from sitting or lying down, when running, etc.: The urine ran out completely unhindered - until the bladder was completely empty
My urologist had already mumbled something about an "artificial sphincter", which was a wake-up call for me ....
So what to do?
After extensive research on the internet, I decided in favour of "EMS treatment". EMS = electrical muscle stimulation.
No sooner said than done, off to the urologist and:
"Doctor, please prescribe me an electrical stimulation device (EMS), I'm still completely incontinent 7 weeks after the surgery"
Answer: "EMS doesn't work, men become continent again despite and not because of the EMS treatment!!"
This ignorant rebuff was my great luck! Why? Stay tuned ...
After I didn't get a health insurance prescription for an EMS device, I bought this device myself:
https://www.tensshop.de/spezialgeraete-elektrotherapie/profi-ems-tens-inkontinenztherapiegeraet-x4-inkl-anal-oder-vaginalelektrode.html (sorry German only)
Cost: 249€
... but it's an Italian device and you can get it via different online vendors: "I-Tech Mio-Peristim" w/ anal electrode (the version without an "end stop")
The manufacturer recommends starting training with adhesive electrodes and only switching to an anal electrode later. Accordingly, "light" programmes with shorter and less intensive stimulations are also available to start with.
I have since used the device very frequently for 3 months - most of the time 3 times a day for 25 minutes each session - and I have increased the training intensity over the weeks in consultation with my physio - and after a while I increased the stimulation very significantly. This works very well with this device, as (partly) free programming is possible in addition to the fixed urological programmes.
My physio immediately talked me out of stimulation via adhesive electrodes, as the sphincter muscle is simply too deep in the body to be sensibly reached via the adhesive electrodes ... So I went straight for the anal electrode.
Result: After 2 weeks there was an initial, very small improvement. Things then continued to improve and after 3 months of use and 8 weeks of additional recovery time, I am completely continent - with now 0 pads per day.
.... but there were 270 EMS sessions ....
Now I simply let (rare) occasional drips go into my pants so that my body immediately realises: "Oooops, there was something there!" With the pads, I often don't notice if a little urine leaks through, and I'm convinced that the immediate feedback is very important for improving continence.
By the way: I have now also been prescribed an "EMS biofeedback device" by the health insurance company - I simply tried another uro. In my opinion, however, the maximum EMS stimulation of this device is far too weak for real therapeutic success, it is limited to 25mA stimulation current, the pulse widths and stimulation times cannot be adjusted at all ...
Without the much more intensive EMS provided by my purchased device, I would certainly still be completely leaky today ... so it was lucky for me that my old uro refused to prescribe it: It would never have occurred to me that a lack of success in therapy could have anything to do with the limitations of the device!
Now to the procedure for my EMS therapy:
All medical healing claims and therapies must be backed up by studies, and this also applies to dosages ... in our case for current levels, pulse widths, stimulation durations etc.
However, as I am extremely reluctant to be told what to do, I have started to "organise" the EMS therapy myself.
I agreed a lot of this with my physio, but I had to - and wanted to - take responsibility for the intensity of the treatment myself.
The device has the following parameters that can be adjusted:
- Time-min: Total running time of the programme in minutes: 25 minutes, I have always left it like this
- Hz: Repetition frequency of the pulses, Start: 25Hz. I have gradually increased this parameter over time up to 35Hz. I don't think it makes sense to go above this, even if the professional rental device works at (fixed) 50Hz. Instead of a series of "muscle twitches", the 50Hz causes continuous tension, which seems nonsensical to me. My physio thinks the same!
- µs: Pulse width of the electrical pulses in µs, Start: 180µs. I slowly(!) increased this parameter over time, like the weight plates in the gym .. in the end it was 380µs .....
- Contr: Contractions, i.e. active time of stimulation in s: 10s
- Recov: relaxation, i.e. the pause time between stimulations: 10s
- In addition, a ramp can be set for the free programmes, so the stimulation current is not switched on and off "hard", but gently - with an adjustable ramp. I haven't used this, just tried it out.
- Current in mA, max: 65mA ... but only with a deeply inserted electrode
- I chose a symmetrical stimulation and pause setting (Contr - Recov) of 10s - 10s because that felt right to me
- The current setting is the most important parameter: Select the current intensity as high as possible without the therapy being uncomfortable or even causing pain
- The appropriate current setting changes greatly with the insertion depth of the anal probe and also within a therapy session
Insertion depth of the anal probe:
At the beginning, I followed the manufacturer's recommendation to insert the probe about 50 mm. You will notice immediately what the right depth is: further out, the skin of the anus is incredibly sensitive, it feels like 1,000 pinpricks. Further in: Much better, even further in: ouch again!
I did this for a few weeks, but I had a problem: The electrode was often squeezed out because of the (anal) sphincter contractions, resulting in: ouch!
This was particularly the case with the recommended - very slippery - water-based lubricant.
So I replaced the lubricant with "Weleda baby nappy cream": much better because it is less slippery.
Of course, this cream conducts electricity less well, but that's not relevant:
- The cream layer is very thin
- The device automatically increases the voltage to keep the current constant
... so: works much better with "nappy cream", which we still know from our two children ...
As I'm an experimental physicist, I always try out all sorts of things, e.g. "What happens if I insert the probe really deep?"
Tried it out, and hey:
- No more pushing out of the electrode
- Much more intensive muscle training possible - I had the feeling: "well, here we go!"
- Completely pain-free
- Requires higher currents
At the next appointment with the physio: "Are you ready yet? Because this is the next step in the sphincter's fitness programme!"
Since then: only deep insertion, high current and, very importantly, active tensing during the stimulation phases. And not the anus, but the bladder sphincter. This is not easy to separate, but you can learn it very well over time. Incidentally, it is much easier to stimulate only the bladder sphincter with the deeply inserted probe.
Important: All changes to the specified medical stimulation programmes must be made by the patient on their own responsibility. The most important thing:
- Listen to your body
- Pain is bad for you - avoid it
I am firmly convinced that I would never have regained my continence without the - very, very intensive - EMS training sessions!
That's why I'm writing this report - to encourage you:
- Do not give up!
- Also look for a world-class physio
- Don't let anyone tell you that nothing more can be done - apart from an artificial sphincter (brief spoiler: If you still have intact nerves: Maybe not after that!)
The question remains: Why did I have these (unusual) incontinence problems even with a very good surgeon?
During my RARP, the bladder could not be pulled downwards to reconnect the ureter, which is otherwise possible without any problems.
I assume that this affected the whole system and I won the jack(piss)pot ...
Anyway, now I'm back to normal!
With best regards,
Henrik
Edited by member 30 Dec 2024 at 12:23
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