I would welcome some feedback on how people have managed practically and coped emotionally with Long Term Incontinence following surgery. I have been told by my consultant that on balance I will be long term incontinent. Thanks
Hi Peter. I am so sorry you have been told those words. Do you know exactly what was being implied. Is this likely to be a year, years or life long??
My incontinence is still with me after 11 months post op but it is only minor now so any advice I can give may not really be relevent.
What I would say though is that I would consider it a good idea to enquire if you can see an incontinence nurse or specialist. I was referred automatically after two months post op and found it useful. There are devices and procedures available which can assist or even resolve the matter for some.
Yes life long unfortunately. It’s to do with the length of my urethra. I’m inclined to have the surgery. I have the option of hormone and radio/ brachytherapy but don’t like the idea of the restricted treatment options that has in the event of a recurrence. I might see if the nurse can put me in touch with an incontinence nurse Thanks for that
Yes the MRI shows confined to Gland. One PSA of 8.7 leading to referral.
I appreciate it’s an undertaking. My question is geared to getting an understand from someone going through the undertaking I’ve coped practically and emotionally
Hi Peter. Have you any idea from the consultant on the likely severity of leakage. Also have you enquired and had feedback about any possible corrective surgery such as a sling or artificial urinary sphincter. There are other options too. I am mentioning these without any idea at all whether they would be suitable for your likely situation. What I would say is that relying on pads is not ideal but I found it just about manageable even when I was totally relient on them. At that time I was getting through about 4 pads a day. Certainly, if it is likely you will have some control then that will make things easier both physically and mentally.
Understandably I think, the consultant gave a range of likely leakage from a trickle to full blown passage of wee but that on balance I was likely to be the latter. The consultant did mention a device that could be fitted at a point down the line once a reasonable amount of time had expired following surgery but i didn't get to explore with him in detail when that would be available, what it was and what difference it would make. I have asked for a further chat with the consultant just to get one or two things clearer in my mind and ill cover details concerning remedial devices but actual feedback from someone who is experiencing what I am anticipating I thought would be invaluable.
My dilemma is weighing the likely level of incontinence long term against the restricted level of treatment that would be available should there be a recurrence after choosing the other option available to me of Hormone, radiation and Brachy-in particularly a recurrence in the prostate which would mean further radiation wouldn't be available to the prostate nor would I likely get prostate removal surgery.
My husband had surgery in June and in the first few weeks his leakage was quite heavy and he refused to leave the house.
He also experienced some leakage while his catheter was still in situ. The NHS continence service sent a years supply of tena shields but these were inadequate for the level of flow. I had already done some research and discovered an online supplier Incontinence Choice and I ordered an assortment of their pads and day and night time pants.
My husband really liked the pants and they gave him the confidence to go out. We've done some quite long walks and been out of the house for up to 10hrs. He's watered a few trees on our walks.
Last week he tried the tena shields and they were adequate whilst he worked in the garden. Yesterday he had an appointment with the physio who us helping him with the pelvic floor exercises and she was really pleased with his progress. She did warn him that he could have reached a plateu and not to assume that the same rate of progress will continue and that he could take a backward step. He'd taken it for granted that he would be fine with the tena shields, but unfortunately, even after watering several trees and going to the toilet a few times he suddenly had a leak that escaped the shield. Those trees on our walk back came in very handy while he changed the shield.
He'll be back to the pants again today. It's a shame that the NHS won't provide these because the Tena Shields don't cut it.
Prior to his surgery I read an article about a man who was going through loads of pads because his flow was like a tap continually turned on. He said a nurse suggested that he might benefit from an external catheter and he said it worked well for him. They are called external because they don't have a tube in the urethra. They work via a condom that is secured to the penis with tape and there's a tube from the condom to a bag.
I hope that yours isn't as bad as the worse case scenario, but I recommend that you are prepared in advance and get those pants ready.
If you would like to read about my husbands journey, please feel free tobread my profiles.
I was going to post a question about this but feel it might be ok to piggy back this thread.
It was sort of explained to me that why incontinence happens after PS is because, unlike women, we haven't had to rely on our pelvic floor muscles to retain the flow and / or the enlarged prostate had been acting like a flow restrictor or so allowed whatever normally manages it to weaken?
I'm not sure either make sense to me.
Given this seem to often be quite an issue, couldn't they fit an electronic valve (with a wireless rechargable battery) where they cut the pipe like they do with a pacemaker and give us a remote control or hidden sub-dermal switch or something?
