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User

Posted 21 Jul 2024 at 19:59

Ian, it may be that the catheter is a bit too high in the bladder,that means the bladder starts to fill before it reaches the drain holes. The catheter balloon could also be close to the sensors that trigger urination.

As long as it is "just inconvenient" to leak, then put up with it for a few more days,do not try and do anything with it.

Added,I have a permanent suprapubic catheter and if I get bit of a UTI I can fill three pads a day.

Thanks Chris

Edited by member 21 Jul 2024 at 20:01 | Reason: Not specified

User

Posted 25 Jul 2024 at 23:40

Back in for the TWOC today, and it has been horrendous. The actual removal was surprisingly quick and easy. In fact I didn't even know they had got it out until they held it up and showed me. However, I immediately realised (as did they by the mess I made) that I had complete lack of control over my bladder. It is (still, 12 hours later) just constantly leaking. I couldn't even do the peeing in the jug test, as I just could not retain any water to try and actually force a voluntary pee.

They scanned my bladder and sure enough it was completely empty. It was/is just behaving like the catheter was still fitted, but unfortunately with no safety bag attached. After another nightmare journey home on the train (someone jumped further up the line so Kings Cross shut down for 3.5 hours) I had gone through 8 pads and a change of trousers. I was expecting not to be dry for a while, but nothing on this scale.

They tell me it should settle down over the next few days. I really hope so, as this is a bit depressing. Is this a common reaction when having it removed?

Ian.

User

Posted 25 Jul 2024 at 23:53

Hello mate.

My TWOC was also a nightmare. I started peeing uncontrollably all the way home. We had to stop enroute and find a chemist for some incontinence pants. My jeans were absolutely soaked and I felt so embarrassed.

Fortunately the deluge was only temporary and within a couple of days I was only needing one or two pads a day. I hope you're the same.

User

Posted 25 Jul 2024 at 23:57

Cheers Adrian

That's reassuring.

Like the new avatar. I see you have traded your good lady for a pint of best!

User

Posted 26 Jul 2024 at 00:17

Yeah. The beer's got a better head on it.😆

Actually the photo was taken by my darling wife on 29th Feb last year. Only 4 days after my prostatectomy. I had 4 pints of Staropramen lager just to test out the catheter. It passed.

Edited by member 26 Jul 2024 at 00:34 | Reason: Additional text

User

Posted 26 Jul 2024 at 11:52

Hi Ian,

That brings memories "flooding" back. I also had zero control immediately after TWOC. Lying down "helped" although the slightest movement and getting back upright meant instant leakage. Initially I was very dispirited - I had been doing pelvic floor exercises for a couple of months prior to my op (delayed due the response to covid) and it seemed to have had little effect.

There was gradual improvement over the next few weeks, but I had hoped for better and was very downhearted.

The real step change came about 5-6 weeks post op when I suddenly passed some clot debris after the bladder neck sutures dissolved (took me by surprise!). All of a sudden I had much better control and that's how it still is 3 years post-op. I'd call it 98% continence - tea gives me issues and if I'm on the beer I have to be mindful that I may need to hit the loo in a hurry. Day-to-day I do not need pads at all. The only time I use them is when I'm out hiking, as fatigue and exertion can lead to the odd drip (it really is just a drip).

Keep up with the PFE and try not to let it get you down (easy to say now I don't have the problem) - things should improve soon, watch out for the clot debris and improvement after it's been passed.

Ian (another one...)

User

Posted 26 Jul 2024 at 16:29

Thanks Ian, that sounds encouraging. I too am much better lying, or even sitting down. The minute I get up again the floodgates literally open.

I'll keep an eye out for that debris!

Cheers

Ian.

User

Posted 27 Jul 2024 at 11:47

Hi Ian

yes, the first week of incontinence is the worst as it’s not what you expect (even though you read about it and think you’re prepared). Then you kind of adjust and learn how to cope. Keep doing the pelvic floors, really important, and, keep your chin up and try and stay positive! Steve had been incontinent for six months post op now and although he does have his down moments, we are ever hopeful it is going to improve and we are getting on with life! You do learn how to adjust!

fingers crossed you have a quick improvement

Debbie

User

Posted 29 Jul 2024 at 23:06

I had my post op histology results back this evening. Still G7 but uprated to T3a as it had ruptured the prostate wall on the right hand side. He's happy he got it all though, so fingers crossed. He also confirmed from my urine sample taken on Thursday that I have a UTI, which probably explains some of my constant leakage issues. A couple of weeks on antibiotics to sort that out.

Whilst clearly very relieved that he says he got it all out, It is very frustrating that my disease progressed this far in12 months, whilst I was supposedly being monitored closely on AS. They were still trying to persuade me to wait and have another PSA test in September. I thank my lucky stars that I pushed back and insisted on being referred for surgery.

Anyway, at least it is now gone, and will hopefully stay that way 👍

User

Posted 29 Jul 2024 at 23:18

Hi Ian

As you know I was T3a as well, but Gleason 9(4+5). It's my 18 month PSA check tomorrow. I'm hoping it will still be undetectable. 🤞

Do you know if your surgeon took out your seminal vesicles or any lymph nodes?

User

Posted 29 Jul 2024 at 23:34

Hi mate

Yes, we seem to be following a similar path through this little maze.

He took the seminal vesicles, but apparently he left the lymph nodes. I was surprised, as I thought he was taking them, but he tells me he rarely does. He knows best I guess.

I'll keep my fingers crossed for you tomorrow pal. Let me know how it goes.

User

Posted 29 Jul 2024 at 23:50

Originally Posted by: Online Community Member

I'll keep my fingers crossed for you tomorrow pal. Let me know how it goes.

Cheers mate. Hopefully I'll get the result sometime on Wednesday, and let you know.

User

Posted 23 Sep 2024 at 12:46

I got my first post op PSA result back at the weekend, and it was <0.02, so undetectable. Very relieved. I know there is a fair chance I might end up needing salvage treatment at some point, as I was T3a, but for now, I am hoping life can get back to some kind of normality.

I am coming up on 10 weeks since the op, and my continence seems to have taken a big step forward in the last week. Overnight change, from using 3-4 pads per day, to only 2 most days.

No mention yet of any help in the ED department, but I have a follow up call with the surgeon on Thursday, so will maybe mention this to him then.

All in all, I am seemingly making great progress, so am happy with that!

User

Posted 23 Sep 2024 at 13:08

Originally Posted by: Online Community Member

I got my first post op PSA result back at the weekend, and it was <0.02, so undetectable. Very relieved.

Brilliant news Ian!

I'm so pleased that your incontinence is improving too. I got an appointment at the ED clinic about 5/6 months after the op.

Have you returned to work? If so, how's it going?

User

Posted 23 Sep 2024 at 13:27

Hi Adrian

Yes mate, first week back last week. It's going ok, but despite having a very sedentary job (basically sitting behind a desk or in meeting rooms all day) I am getting very tired really quickly. I was pretty wiped out by Friday to be honest. I guess sitting around at home for 8 weeks got me out of the habit of early starts!

User

Posted 23 Sep 2024 at 14:44

I went back to work after 7 weeks in early June like you a desk job and it was probably October before my stamina and energy levels were back to something resembling normality. I was really surprised at how long it took to recover. I was luckily as well because I had the scope to come in later and finish earlier. Good luck with the recovery and remember listen to your body don’t push it too much too soon.

User

Posted 23 Sep 2024 at 21:00

Originally Posted by: Online Community Member

I am coming up on 10 weeks since the op, and my continence seems to have taken a big step forward in the last week. Overnight change, from using 3-4 pads per day, to only 2 most days.

Brilliant result! Seeing that < sign must be a huge relief. And you're making great progress towards continence too.

Hopefully you can get some ED help soon too.

Cheers, kev.

User

Posted 23 Sep 2024 at 21:40

Good result, Ian.👍

Dave

User

Posted 24 Sep 2024 at 08:51

Great news Ian 👍

User

Posted 24 Sep 2024 at 15:57

Great news Ian and good luck with your recovery.

Derek

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