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My Retzius sparing RARP + NeuroSAFE journey

User
Posted 14 May 2020 at 18:43

Great news Simon.


Good luck to all awaiting test results.


Angex

User
Posted 16 May 2020 at 17:16

So I am pretty much 6 months post RS-RARP. No incontinence issues and no ED. Been peeing like a race horse and full voiding etc Last night I noticed a build up of fullness in Lower bladder area and no peeing so much. Still peeing about 100-200ml but it’s not coming freely even through drinking lots of water. Any thoughts on this? Could it be caused my the strong coffee I have with breakfast or too much wine? I took some ibuprofen 400mg last night before bed and slept 6hrs. Then woke and peed a couple of time ~350ml then ~150ml and hour or so later after water. Discomfort in bladder area and certainly changed from normal bladder habits. Hoping this doesn’t indicate stricter etc as don’t really want to have to go into hospital? Will start keeping a log of peeing results. Any thoughts or guidance much appreciated.


Simon

Edited by member 17 May 2020 at 05:45  | Reason: Not specified

User
Posted 16 May 2020 at 18:03

Simon


Could be an infection or the result of your intake, constipation ? If it does persist and you suspect some sort of obstruction, it might be an idea to do a urine diary and record the flow, mls divided by secs.


Lots of urine diary charts on the web.


Thanks Chris

User
Posted 16 May 2020 at 18:54
Both caffeine and alcohol are bladder irritants according to my guy (i.e. they make you want to pee more), so I can't see why they should affect retention. I had retention after the biopsy, which they said was down to the anaesthetic. Was also told to not drink too much water at once if suffering from it as it can overload the bladder and make it worse.
User
Posted 17 May 2020 at 05:27
Her Loveliness took exception when I was measuring my flow after catheter removal - β€œI hope you are not using my measuring jugs!’

I helpfully informed her that urine is sterile and that I would put them through the hottest programme in the dishwasher when I had finished with them. She was still not impressed.

Hope you get sorted, Symantec. The only setback I have had is that I woke up a couple of times with wet pants on the settee after about eight pints, so I suppose they were self-inflicted.

Best of luck.

Cheers, John.
User
Posted 17 May 2020 at 05:52

Thanks all


Recording everything. Have a flow meter somewhere that I bought last year so will dig that out too.


John, I didn’t tell the good lady which jug I used. Although I did chuckle inside when she used it to serve gravy during Sunday lunch πŸ‘€ Ah yes...the beer effect. That’s stung me too but moving to wine sorts 100% thus far πŸ€ͺ


cheers


S

Edited by member 17 May 2020 at 05:54  | Reason: Fat fingers

User
Posted 17 May 2020 at 07:46
Being a kind, considerate sort, I bought a plastic measuring jug for the purpose. Bit of a waste of money, because I only used it about 3-4 times as I got over my retention problem quickly.
User
Posted 19 May 2020 at 06:41

Update on Urine retention:


On Saturday night the Sauvignon Blanc (SB) therapy appeared to work well and relax things. Flow and volume recovered to normal levels. Sunday same flow issues occurred again. The sensation was very similar to when experiencing a ‘freeze up’ over the years occasionally when in public loo. Around 3pm Sunday I decided to test SB therapy to try and determine minimal amount needed to induce openI guess of taps. For me this was ~200ml....single dose to settle the muscles around sphincter which allowed for normal flow and volume. Happy to report that Monday was all normal without needing additional SB therapy. 


Due a telephone consultation with the prof on Friday so will talk through it.


what I’ve done in the meantime in increase exercise levels as had been pretty lazy recently. Removed coffee from my diet (I only had one turbo filter coffee mid morning a day) and reduced time spent sitting at computer as this appears to exacerbate pelvic floor discomfort. Plus restarted my pelvic floor exercises to stimulate the muscles in the area. So far so good.... Whole episode was very odd indeed but pleased I didn’t need to visit A&E.

Edited by member 19 May 2020 at 06:50  | Reason: Not specified

User
Posted 19 May 2020 at 15:16

Best of luck with the upcoming consultation TG, and hope all goes away soon!! 

User
Posted 19 May 2020 at 17:14

Hi AT


Thank you :-). Water works all back to normal now so I have no excuse to randomly quaff Sauvignon Blanc. Hope you are all ok too.


TG

User
Posted 20 May 2020 at 06:24

That’s great to hear! We are ok, just following the whole Covid situation anxiously.... 

User
Posted 20 May 2020 at 07:08

Originally Posted by: Online Community Member
Recording everything. Have a flow meter somewhere that I bought last year so will dig that out too.


Curious what sort of flow meter you got?


I knocked one up from some scales and a Raspberry Pi (computer, not dessert) the first weekend when I was having my external beam radiotherapy.


And recording everything - a man after my own heart. I do still record peak flow rate sometimes, and 9 months after HDR brachytherapy treatment, it's still slowly increasing, although not yet back to the starting point.

User
Posted 20 May 2020 at 09:09

Originally Posted by: Online Community Member


Originally Posted by: Online Community Member
Recording everything. Have a flow meter somewhere that I bought last year so will dig that out too.


Curious what sort of flow meter you got?


I knocked one up from some scales and a Raspberry Pi (computer, not dessert) the first weekend when I was having my external beam radiotherapy.



Any thoughts on this Andy? I'm thinking of making one too


https://hackaday.com/2018/04/01/assess-your-output-with-a-cheap-diy-urine-flowmeter/


Cheers


Bill

User
Posted 20 May 2020 at 11:04

I gave a presentation on the flow meter I built to a group of Raspberry Pi enthusiasts, and cleverly turned it into a prostate cancer awareness session for an audience which was almost entirely men of the age to be getting tested - not what they were expecting, but they clearly enjoyed it (in spite of my laptop and the projector keeping falling out of presentation mode).


https://skillsmatter.com/skillscasts/14627-scales-and-flow-meters


The figure you are looking for is peak flow rate. Can also be useful to know your bladder capacity. Flow rate meters produce a lot more info, but the urologists I spoke to about it said they don't use any of the other data.


The one you point to looks fine, although I only skimmed the videos.

Edited by member 20 May 2020 at 13:24  | Reason: Not specified

User
Posted 20 May 2020 at 14:38

Hi Andy


I’m a computer and data guy too. I didn’t dust one of the pi’s off but went low tech: 


MDTI Myaid UFlow Meter from amazon. Seemed to do what I needed when I picked it up mid last year. Good for gathering more data but didn’t use it for the issue this time as was doing more volumes in/out. If the problem had persisted probably would have started to gather flow stats.


https://www.amazon.co.uk/dp/B00QTREFCW/ref=cm_sw_r_cp_api_i_9yoXEbG2K3ZR0


Thankfully looks fully settled now. Fingers crossed it doesn’t pop up again but I have a bottle of Sauvignon Blanc in the fridge just in case as first course of treatment 🀠


Simon

User
Posted 21 May 2020 at 21:01

Just out of interest I decided to see if I could trigger the urinary retention issues again today. Had a strong coffee at 11am (first since Sunday). At 3pm same retention issues surfaced again. Loaded on a few glasses of water. Was able to void between 50-100ml at intervals over a 3hr period. Whereas I’d normally be doing 350ml every 30 or so minutes when drinking lots. At 6pm decided to try the antidote... ~200ml Sauvignon Blanc....20mins later voiding normally. Will try again next week but useful tests. Will mention to the prof tomorrow morning.


Simon

Edited by member 21 May 2020 at 21:02  | Reason: Not specified

User
Posted 21 May 2020 at 23:39

Ask for a prescription...

User
Posted 22 May 2020 at 06:15
You could always test your flow rate by drinking a gallon or so of best bitter and checking on it by pissing into the empty pint glasses whilst timing it on your phone stopwatch.

Not in a pub these days, obviously, (that kind of behaviour in the lounge probably would have got you barred β€˜before’!)

I buy 5Β° Amber Ale from Aldi for Β£1.09, saving me at least Β£2.50 if I’d bought similar in a pub.

Cheers!

John.
User
Posted 22 May 2020 at 09:43

Spoke to the Prof. He’s very happy with PSA levels etc and said it accurately reflects my Histology which is great.


In terms of the retention he said a lot of things could irritate the bladder neck post surgery and that the brain is still relearning the new pathways and nerve signals so not to be too concerned. Additionally scar tissue tends to reach a plateau of healing and softening after between 12-18months so things should settle even more. 


He said he wasn’t aware that Sauvignon Blanc had such magical medicinal properties but regretfully cannot prescribe it. Worth asking eh..... πŸ€ͺπŸ˜€πŸ€“


So hopefully a fairly quiet period from a urology perspective until my next PSA and review in three months.


Have a great bank holiday folks and stay safe.


Simon 

Edited by member 22 May 2020 at 09:43  | Reason: Not specified

User
Posted 22 May 2020 at 09:57

Originally Posted by: Online Community Member


Not in a pub these days, obviously, (that kind of behaviour in the lounge probably would have got you barred ‘before’!)

Cheers!

John.


 


It would be perfectly normal behaviour in a rugby club, though. 


Tech guy - πŸ‘


 

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
User
Posted 22 May 2020 at 10:00

John


I’d need more than two hands for this 🀷🏼‍♂️ πŸ™ 


Purchased some more Sauvignon Blanc...for medicinal purposes πŸ€”


S

User
Posted 23 May 2020 at 00:51

We’re quite a jolly little group here sometimes aren’t we, given that many are are riddled with cancer?


League or union, Matron?


Cheers 🍾 πŸ₯‚


John.

Edited by member 23 May 2020 at 05:30  | Reason: Not specified

User
Posted 23 May 2020 at 11:26
How dare you 😱 - union, obviously!
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
User
Posted 12 Jun 2020 at 17:25

Update month 7:


Just a quick update. All still pretty stable. Pelvic floor discomfort improving slowly. Couple of bladder voiding issues which were quickly mitigated with Sauvignon Therapy. Since then I found coffee and hot curries were trigger foods although had been eating for months beforehand without issue. Removed these from my diet and problems totally resolved and peeing like a racehorse.


So all good thus far. Hope everybody is staying safe and enduring the lockdown.


Have a great weekend.


 


Simon

User
Posted 12 Jul 2020 at 22:21

Originally Posted by: Online Community Member


Curious what sort of flow meter you got?


I knocked one up from some scales and a Raspberry Pi (computer, not dessert) the first weekend when I was having my external beam radiotherapy.


And recording everything - a man after my own heart. I do still record peak flow rate sometimes, and 9 months after HDR brachytherapy treatment, it's still slowly increasing, although not yet back to the starting point.



Another techie here. Spent a couple of hours with a Pi and HX711 scales kit this evening. It works more than well enough to confirm my suspicions that flow is much better post surgery (17, up from 10). I will probably now spend far too long making it draw pretty charts from the data with matplotlib πŸ˜‚

User
Posted 12 Jul 2020 at 22:37

hahaha my flow nominally is as good pre-diagnosis. Does go up and down a little but mostly fine. The nerves/brain are still forming the new neural nets to cope with the change of config :-)


Visualising it in Oculus Rift VR would be cool :-)


 

User
Posted 12 Jul 2020 at 23:23

And I thought I was over the top with a boots urine bottle and the second hand of my watch.πŸ₯΄πŸ‘.


Thanks Chris

User
Posted 13 Jul 2020 at 18:26

Originally Posted by: Online Community Member


Visualising it in Oculus Rift VR would be cool :-)



If you had the goggles on while you did it, the wee would very likely not end up in the intended receptacle. πŸ˜‚

User
Posted 13 Jul 2020 at 19:18

Hahahaha bad enough trying to find the keyboard keys πŸ€“


I used oculus to help visualise my 3T mpMRI image data. After looking at lots of reference images I would able to determine the suspect areas before seeing my consultant for feedback and the dreaded diagnosis. I made a few 3D cross sections looking outwards and showed then to my good lady whose words were ‘I cannot unsee this...’ πŸ˜πŸ€–

 
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