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Regaining continence after surgery

User
Posted 11 Aug 2024 at 20:09

My Gleason Score  has gone up from 6 to 7 so I am now being recommended to get treatment.

At this stage my consult was with a Urology Surgeon who outlined options of surgery and radiology but with more detail on surgery. I am still to get an appointment with an oncologist .

As we know, the main risks with surgery are incontinence and ED. Of those two, the incontinence would be my main concern.  I would like to hear from anyone who has successfully regained their continence.  I am interested to know if after the recovery period when continence resumes, does that involve a conscious effort with the pelvic floor muscles or does it just become "natural" as it was before surgery?

 

User
Posted 12 Aug 2024 at 08:19

Hi,

I don't want to raise your hopes too much but I regained continence very quickly after my TWOC (trial without catheter). I did a lot of pelvic floor exercises in the months before diagnosis as I suffered from repeated uti's and struggled with some leakage. 

Others on this site tell a different story of longer struggles regaining continence following surgery. So I would recommend starting PFE's now and be prepared for the long term. 

Hopefully others will comment with good advice. 

Good luck.

Kev.

User
Posted 12 Aug 2024 at 09:37
I agree with Kev. PFE from the time you start the countdown to surgery and as soon as the catheter is removed are essential. Everyone is different but nine months posr RARP I am virtually dry, the occasional drip when I've been on my feet all day or when tired or when I forget to "engage" before lifting, stretching, coughing, anything that adds pressure. The early weeks it's persevere and see a gradual change but I respect that others on this site may have not been so fortunate even though they did all the above. I still do PFE three times a day. SQUEEZY app is my reminder. Hope you make the right decision. I am glad I went for surgery, not everyone gers options.

User
Posted 12 Aug 2024 at 09:46

I waited for a new robot to be installed at our hospital, In those four months I did lots of PFEs, usually when bored driving around the UK. 4 days after catheter removal I was 99 percent dry.

I put it down to the PFEs,my wife commented, " are you sure it wasn't down to the skill of the surgeon" 😀. 

One exercise recommended on Andy's zoom meeting was to , contract the pelvic muscles while going from sitting to standing, eventually that will become almost automatic. 

On the ED side , never give up and have lots of fun finding a solution.

Thanks Chris 

User
Posted 12 Aug 2024 at 10:07
That's encouraging news about successfully regaining continence. Can you elaborate on how it works once you have reached that stage? Apart from contracting the PF muscle when standing is it much as it was before surgery? Are you consciously operating the muscle throughout the day or only as you begin to hear the call of nature?

User
Posted 12 Aug 2024 at 10:54

John, I continued to wear a pad for a few months after surgery, just in case but never had a major leak. I don't think I ever fully relaxed and and I occasionally went to the toilet just in case,for example setting off on a long journey. I carried on doing PFEs after surgery, I probably did them almost subconsciously.

Some of my work involved sitting behind a desk, bending down to pick up a drawing or file off the floor did sometimes cause a small leak.

I did take extra precautions if I was stopping out over night in a hotel.

Unfortunately for me a few years after surgery and a near normal life, some very rare side effects of further treatment has left me with a permanent suprapubic catheter and a slight leak. It is surprising how we humans adapt to our new normal.

Hope all goes well with whichever route you choose.

Thanks Chris 

Edited by member 12 Aug 2024 at 10:56  | Reason: Not specified

User
Posted 12 Aug 2024 at 11:54

Hi John, unfortunately everyone is different, im not sure if age and pre-op fitness levels are a factor or if its just pot luck. My story is, I was fully dry at night from catheter removal but still wore pads in bed for a 8 week period just in case. Then during the day I was fully dry from 15 weeks post surgery (so 13 weeks post catheter removal). So basically been dry for the last week now. I continue to do pelvic floor exercises each day. I don't feel like I need to make a conscious effort to hold anything in when lifting, walking, playing golf etc however my brain may have now been programmed to do that automatically. Continence was one of my big pre surgery worries, and to be honest it was really bad the first couple of days after catheter removal, I was using 8 or 9 pads for those first couple of days. Since surgery I've been on decaffeinated tea and coffee and 0% alcohol beers, ie a couple of bottles after golf. Best of luck with your treatment, remember celebrate your  achievements along the way in your recovery. I bought a new set of golf clubs last week in 'Continence celebration' they may be wrapped around my neck when my wife finds out 🤣🤣.

User
Posted 12 Aug 2024 at 13:05

Hi JohnWaddell

I was your age when I had prostatectomy and regained 99.9% continence after three months and that is where I am now after over 12 years. I use a small pad, more for peace of mind than anything else. I do leak when sexually excited and at orgasm. That is not too difficult to manage for us.  Good luck.

 'Physics is like sex: sure, it may give some practical results, but that’s not why we do it.'                    Richard Feynman (1918-1988) Nobel Prize laureate

 

 

User
Posted 12 Aug 2024 at 13:15

Hi John,

My op was November 2021 and I think I am about as continent as I am going to get.  In my case, that means I may go a few days without any leak and have the odd day when I may drip once or twice. No major leaks at all. On those days, a drip may occur when I am just standing still (perhaps for too long?) or bending/stretching etc. To address your specific question, if you walk around all day tensing your PF muscle it will probably get over tired and eventually fail to do its job of supporting your sphincter. It is just a muscle, like any other. Train it to be strong but don't overdo it. I think that when you reach my stage, I call it 95-98% continent, you get so confident that you forget to tense the PF when it may be advantageous to do so. The sitting to standing example I can see as becoming automatic, but lifting a heavy shopping bag may not trigger such a reflex, especially  if you have been OK for a while. That said, every now and then my wife has a 25kg sack of epsom salts delivered and I carry that upstairs without any thought of tensing my PF (too busy keeping my balance on the stairs) and (to date!) have never leaked doing it. When I feel my bladder is full and need a pee that is no different to pre op times when I didn't realise I was using my PF to hold it up. I think that just goes to show that regular exercise of the muscle really works . To sum up, the odd leak occurs when I am not expecting it, but I am not going to spend my day with it constantly on my mind. For confidence, I wear a Tena level zero when gardening or doing housework etc. Also if I am out for the day or evening. Otherwise, at home, I do not bother and rarely get caught out but if I do, the drip is just the size of a sixpence in my underpants. Probably less than when I put little Peter away too quickly in early days. 

Good luck, Peter

User
Posted 12 Aug 2024 at 17:48
Thank you all so much for responding to my query. This has been so helpful and given me a much better picture of what life might be like if I opt for surgery.

I have just received the follow up letter summarising my recent consultation and I am glad to see that a meeting is now to be arranged with an Oncologist to discuss Radiotherapy in more detail.

Thanks again for all your answers.

Good luck and good health for your own futures. Knowledge is power!

John

 
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