I'm interested in conversations about and I want to talk about
Know exactly what you want?
Show search

Notification

Error

My RARP

Email this conversation Print this conversation
User
Posted 19 Mar 2020 at 19:21

OK so I had the catheter removed today, which was 9.5 days post-surgery (the surgery was late and the catheter removal early, hence the 0.5).


I was half-expecting some great gush, but actually I'm finding the opposite: I'm having to almost force the pee.


Anyone else experienced this?

Edited by member 07 Sep 2020 at 20:24  | Reason: Not specified

User
Posted 21 Apr 2021 at 11:20

Great result.

Ido4

User
Posted 19 Mar 2020 at 23:37

Peter


It could be a bit of inflammation in the Urethra or a piece of scab or debris from the surgery. 


A few of us on here have had migration of hem o lok clips into the bladder or urethra which can cause a partial blockage but that should be quite rare. 


 


Thanks Chris

Edited by member 19 Mar 2020 at 23:44  | Reason: Not specified

User
Posted 20 Mar 2020 at 14:44

Hi Peter,


They normally check flow before you're allowed to leave.   Do you think it's changed since the test?


You're right that flow is much faster after you've had the prostate removed.


Have you been drinking enough?   I recall surprise it took so long before I was able to go when I had my trial without catheter and the flow into the force measuring pot wasn't as direct as it is now.


The bladder is a muscle and it hasn't been working for a week so perhaps needs a bit of exercise to get normal  forces working.


Keep an eye on it for changes and don't let it get that you're full up and can't go as you'll need to get the catheter back fairly quickly.


All the best Peter


 


 


 

User
Posted 20 Mar 2020 at 20:05

Hi Peter, 


They didn't check my flow at TWOC either (my flow wasn't particularly good to start with). But by 4 weeks, there was no more debris and my flow really picked up. I felt like I could pee like a horse.


Good idea to maintain fluid intake, and keep an eye out for UTI's too.


Good luck with your recovery. 

User
Posted 20 Mar 2020 at 20:21

I was the same. After TWOC I was like a hawk. Keep a steady input of fluids and just keep weeing. Will take a few days to start to settle. So long as something is coming through then all good. Mine was sometimes strong and other times a bit stop start and it took a few weeks to settle down. When you’re focused on it you notice more than you would normally. Unless things stop completely how do you get a pressure buildup and pain I wouldn’t panic.

User
Posted 22 Mar 2020 at 10:59

Had the same thing with wind and sneezing. Pelvic floor kinda managed it. Pleased to say that settled too and can now pretty much pass wind as I used too....but don’t push too hard :-)


pelvic floor are fine to do several times a day. I was told to just listen to your body as lots of bruising and repairs. If something hurts then back off a little. Just build it up slowly over time.


on the tadalafil front I started to take it after my injections. But I think that was a timing thing as saw my consultant ~week 4. Would recommend pinging your doctor an email or putting in a quick call. Don’t forget a pharmacist can probably help too as they know all the parameters around drug interactions.


TG

User
Posted 23 Mar 2020 at 21:12

Cool. I have 5mg per day. And I break it in half and take every 12hrs but once a day is fine. If found less side effects taking  weaker dose more regular rather than a large dose every 3 days. Surgeon agreed with me and prescribed accordingly. Side effects are varied but I found at this dose level very minor. Maybe slight feeling of stuff nose etc at 2.5mg twice a day not notice this at all. And for me made erections like I was a teenager. 


Hope you get on ok with it.

User
Posted 25 Apr 2020 at 12:31

When I mentioned to the Prof about blocked nose and face he said very common side effect of any PDE5 inhibitor. Take medical guidance but I found 2.5mg worked well as a trade off. I think it’s very individual as you have to balance what best works for you.


cheers


TG

User
Posted 04 May 2020 at 22:05

Keep persevering as there will be a lot of inflammation and healing going on. I had one side nerves removed too so didn’t expect much. If you had good erections pre-op there is a good chance these will return. From the Profs notes he said can take up to three years. I was lucky as erections started even with the catheter was in place which wasn’t good at all and I rapidly negated them. My gf found it very amusing πŸ‘€


On the urge incontinence front I can get the odd dribble but mainly when leaning over the sink washing up just before bedtime (with a full bladder). It’s improved a lot over time as I had similar pre-op although control was better. it doesn’t catch me out much these days as I either tension my pelvic floor or just go and have a wee. Other risk area are high volumes of water/beer In the evening. Slight wet patch on two occasions since November... I didn’t wake up quick enough for the loo. I attribute it down to beer as tends to knock me out. Solution is switching to wine and not had a problem since πŸ˜ƒπŸ·Other than that continence pretty much normal.


Key milestones are about 5-6 weeks when stitches around reconstructed bladder neck begin to dissolve which I found stopped my day to day leaking completely. Over the following six months or so the scar tissue softens and you should experience further improvement which should plateau after about a year. So hang in there as I’m sure things to settle over time.  

Edited by member 04 May 2020 at 22:18  | Reason: Not specified

User
Posted 07 Sep 2020 at 20:43

Great news on the PSA. Can’t ask for a better number than that. Yeah does take time to settle. Talking to the prof on Friday he mentioned in some cases ED can take quite a while to recover and in some cases up to three years. Onwards and upwards! 


Simon

User
Posted 13 Jan 2021 at 02:53
If they say your PSA is undetectable, why worry about the exact figure to umpteen decimal places? Just keep calm and carry on and cross your fingers that the next and subsequent tests are undetectable as well!

Cheers, John.
User
Posted 20 Apr 2021 at 21:05

Brilliant news.


Jim

User
Posted 20 Apr 2021 at 21:08

Great news, Peter! 🍺

User
Posted 20 Apr 2021 at 21:13

Wonderful πŸ‘πŸΌ

User
Posted 25 Nov 2021 at 19:05
Latest PSA is <0.01. I've been switched to the nurse it appears, so the surgeon must have no concerns?
User
Posted 26 May 2022 at 12:52

Great news. I'm four years post diagnosis and moved to yearly appointments, but I can organise my own PSA six monthly if I want, and contact them if I am worried.

Dave

User
Posted 26 May 2022 at 18:03
I wouldn't be happy with annual testing so soon, Peter - I think NICE guidance is still 6 monthly. If it is the hospital that is saying they will only offer annual testing, that seems reasonable as, in many areas of the country, your PSA tests would have been handed back to the GP by now.
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
User
Posted 26 May 2022 at 19:03
You would hope so, wouldn't you πŸ˜”

I think ask the question and if the GP says no, go back to hospital team and say you are uncomfortable with annual testing.
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
User
Posted 26 May 2022 at 19:40

Great news! I’m due to go onto annual PSA bloods subject to my next reading being undetectable in November this year (3 years post op).

Show Most Thanked Posts
User
Posted 19 Mar 2020 at 23:37

Peter


It could be a bit of inflammation in the Urethra or a piece of scab or debris from the surgery. 


A few of us on here have had migration of hem o lok clips into the bladder or urethra which can cause a partial blockage but that should be quite rare. 


 


Thanks Chris

Edited by member 19 Mar 2020 at 23:44  | Reason: Not specified

User
Posted 20 Mar 2020 at 14:44

Hi Peter,


They normally check flow before you're allowed to leave.   Do you think it's changed since the test?


You're right that flow is much faster after you've had the prostate removed.


Have you been drinking enough?   I recall surprise it took so long before I was able to go when I had my trial without catheter and the flow into the force measuring pot wasn't as direct as it is now.


The bladder is a muscle and it hasn't been working for a week so perhaps needs a bit of exercise to get normal  forces working.


Keep an eye on it for changes and don't let it get that you're full up and can't go as you'll need to get the catheter back fairly quickly.


All the best Peter


 


 


 

User
Posted 20 Mar 2020 at 15:34

They did not check flow, just that water was passing in normal volumes and there wasn't much residual.


However, after the first pee, which was abit slow, I did two more and the flow was OK. But since then it has gone down. I wouldn't say it was really bad, but my flow was actually quite good pre-op, despite the size of my prostate.


I'll drink more and keep an eye on things. I've had retention before, so I know what it feels like.

Edited by member 20 Mar 2020 at 19:46  | Reason: Not specified

User
Posted 20 Mar 2020 at 20:05

Hi Peter, 


They didn't check my flow at TWOC either (my flow wasn't particularly good to start with). But by 4 weeks, there was no more debris and my flow really picked up. I felt like I could pee like a horse.


Good idea to maintain fluid intake, and keep an eye out for UTI's too.


Good luck with your recovery. 

User
Posted 20 Mar 2020 at 20:21

I was the same. After TWOC I was like a hawk. Keep a steady input of fluids and just keep weeing. Will take a few days to start to settle. So long as something is coming through then all good. Mine was sometimes strong and other times a bit stop start and it took a few weeks to settle down. When you’re focused on it you notice more than you would normally. Unless things stop completely how do you get a pressure buildup and pain I wouldn’t panic.

User
Posted 22 Mar 2020 at 10:40

Thanks guys. As suggested it is slowly getting better, as are the night time interruptions. So far the only thing that has caused a small leak is occasionally when passing wind - which is kind of funny when you think about some of the instructions for pelvic floor exercises.


Talking of which, I was happily doing 6 iterations a day before the op and an occasional "crunch one" on top. It feels different since the op, like the muscles are bruised/tender, so I've only done 3 the last couple of days. Is the feeling normal and should I increase gradually or go for it?


Lastly, I just remembered the Tadalafil, but as it (and instructions) was given to me when I was still a bit groggy, I can't remember whether I should be taking it now, or wait until the injections course is over? I feel it was after the catheter came out, but obviously don't want to be taking it before I should.

Edited by member 22 Mar 2020 at 10:41  | Reason: Not specified

User
Posted 22 Mar 2020 at 10:59

Had the same thing with wind and sneezing. Pelvic floor kinda managed it. Pleased to say that settled too and can now pretty much pass wind as I used too....but don’t push too hard :-)


pelvic floor are fine to do several times a day. I was told to just listen to your body as lots of bruising and repairs. If something hurts then back off a little. Just build it up slowly over time.


on the tadalafil front I started to take it after my injections. But I think that was a timing thing as saw my consultant ~week 4. Would recommend pinging your doctor an email or putting in a quick call. Don’t forget a pharmacist can probably help too as they know all the parameters around drug interactions.


TG

User
Posted 22 Mar 2020 at 11:15
Thanks - my pharmacist said he'd never heard of Tadalafil before and had to make up my dose from two very different boxes, so I'll probably try the specialist nurse first - they're generally easiest to get hold of.
User
Posted 23 Mar 2020 at 18:56

I got the answer - start taking it today, but be aware of the possible side effects. Oh damn, not another one with indigestion...

User
Posted 23 Mar 2020 at 21:12

Cool. I have 5mg per day. And I break it in half and take every 12hrs but once a day is fine. If found less side effects taking  weaker dose more regular rather than a large dose every 3 days. Surgeon agreed with me and prescribed accordingly. Side effects are varied but I found at this dose level very minor. Maybe slight feeling of stuff nose etc at 2.5mg twice a day not notice this at all. And for me made erections like I was a teenager. 


Hope you get on ok with it.

User
Posted 23 Mar 2020 at 22:14

50 years since I was a teenager... 🀣

User
Posted 25 Apr 2020 at 09:40
A quick update. I started taking the tablets at 5mg, but was getting symptoms like sinusitis - made wearing my glasses painful and was having to take paracetomol for the pain so I could sleep. After speaking to the SCN I was told to cut the tablets in half, which seemed to work.

However, at that point I started to go downhill - having to get up every two hours in the night, losing weight, feeling fatigued, so I stopped taking the tablets. That didn't help and it became obvious after another couple of days that I had an infection. A dose of antibiotics cleared that, but it seems that the infection had inflamed the bladder, so I needed a few days and ibuprofen to bring things back to normal. As a bonus, it seems like the single problem I was having with my continence (getting a dribble sometimes when passing wind) has just gone.

Now they are back to normal I've started taking half tablets again, and apart from a slightly stuffy nose on the first day, I don't seem to have any side effects this time round. Wondering if I should start taking full tablets again...
User
Posted 25 Apr 2020 at 12:31

When I mentioned to the Prof about blocked nose and face he said very common side effect of any PDE5 inhibitor. Take medical guidance but I found 2.5mg worked well as a trade off. I think it’s very individual as you have to balance what best works for you.


cheers


TG

User
Posted 04 May 2020 at 20:52

Consultant rang me today. Negative margins and an undetectable PSA. So very good news there.


On the less good news I found that after my last posting I was getting what the consultant describes as urge incontinence. It's only little dribbles and only sometimes, but still... Been told to cut out caffeine, alcohol and tomatoes for a while.


Back onto a full tablet of Tadalafil the last two days as getting no side effects any longer (now finished the first 20), but no great effect as yet. Probably not surprising as they could only spare the nerves on my right side.

Edited by member 04 May 2020 at 23:59  | Reason: Not specified

User
Posted 04 May 2020 at 22:05

Keep persevering as there will be a lot of inflammation and healing going on. I had one side nerves removed too so didn’t expect much. If you had good erections pre-op there is a good chance these will return. From the Profs notes he said can take up to three years. I was lucky as erections started even with the catheter was in place which wasn’t good at all and I rapidly negated them. My gf found it very amusing πŸ‘€


On the urge incontinence front I can get the odd dribble but mainly when leaning over the sink washing up just before bedtime (with a full bladder). It’s improved a lot over time as I had similar pre-op although control was better. it doesn’t catch me out much these days as I either tension my pelvic floor or just go and have a wee. Other risk area are high volumes of water/beer In the evening. Slight wet patch on two occasions since November... I didn’t wake up quick enough for the loo. I attribute it down to beer as tends to knock me out. Solution is switching to wine and not had a problem since πŸ˜ƒπŸ·Other than that continence pretty much normal.


Key milestones are about 5-6 weeks when stitches around reconstructed bladder neck begin to dissolve which I found stopped my day to day leaking completely. Over the following six months or so the scar tissue softens and you should experience further improvement which should plateau after about a year. So hang in there as I’m sure things to settle over time.  

Edited by member 04 May 2020 at 22:18  | Reason: Not specified

User
Posted 07 Sep 2020 at 20:35

Got results of second PSA today, although official consulation is tomorrow: 0.001, same as last time.


In general, remain totally dry and feeling of urgency is slowly getting better. No major change on the ED front yet; the pump has helped, but without it there's not much action...

User
Posted 07 Sep 2020 at 20:43

Great news on the PSA. Can’t ask for a better number than that. Yeah does take time to settle. Talking to the prof on Friday he mentioned in some cases ED can take quite a while to recover and in some cases up to three years. Onwards and upwards! 


Simon

User
Posted 08 Sep 2020 at 09:12

Great PSA result.

Ido4

User
Posted 12 Jan 2021 at 20:28
Third result today - undetectable. Phone line was dreadful, so will have to wait for the letter to see the actual number. It's three weeks since the blood test; I'd almost forgotten about it. Still not much joy on ED.
User
Posted 13 Jan 2021 at 02:53
If they say your PSA is undetectable, why worry about the exact figure to umpteen decimal places? Just keep calm and carry on and cross your fingers that the next and subsequent tests are undetectable as well!

Cheers, John.
User
Posted 20 Apr 2021 at 20:51

Results of fourth blood test today; had a little frisson of fear this morning, but needn't have bothered - undetectable again. Moved to 6 monthly testing, which I'm fine with.


Doc is also moving me onto Viagra. Not sure why that should work any better than Tadalfil, but will give it a try.

User
Posted 20 Apr 2021 at 21:05

Brilliant news.


Jim

User
Posted 20 Apr 2021 at 21:08

Great news, Peter! 🍺

User
Posted 20 Apr 2021 at 21:13

Wonderful πŸ‘πŸΌ

User
Posted 21 Apr 2021 at 11:20

Great result.

Ido4

User
Posted 25 Nov 2021 at 19:05
Latest PSA is <0.01. I've been switched to the nurse it appears, so the surgeon must have no concerns?
User
Posted 26 May 2022 at 12:27
Latest PSA is undetectable. At two years now and they say they will only test annually. Is that normal - I was under the impression that it would still be 6 monthly this year?
User
Posted 26 May 2022 at 12:52

Great news. I'm four years post diagnosis and moved to yearly appointments, but I can organise my own PSA six monthly if I want, and contact them if I am worried.

Dave

User
Posted 26 May 2022 at 18:03
I wouldn't be happy with annual testing so soon, Peter - I think NICE guidance is still 6 monthly. If it is the hospital that is saying they will only offer annual testing, that seems reasonable as, in many areas of the country, your PSA tests would have been handed back to the GP by now.
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
User
Posted 26 May 2022 at 19:00
Thanks Lyn

So, if I contact my GP they ought to be OK with filling in the mid-year tests, do you think?
User
Posted 26 May 2022 at 19:03
You would hope so, wouldn't you πŸ˜”

I think ask the question and if the GP says no, go back to hospital team and say you are uncomfortable with annual testing.
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
User
Posted 26 May 2022 at 19:40

Great news! I’m due to go onto annual PSA bloods subject to my next reading being undetectable in November this year (3 years post op).

 
Forum Jump  
Email this conversation Print this conversation

Similar Topics

My RARP Diary by Benchmark
in Localised cancer

Join the online community now.

Click through to become a member and gain access to support, information and real time replies.




MenuTop ▲
©2024 Prostate Cancer UK