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Post operative incontinence and bladder capacity

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User

Posted 01 Aug 2024 at 16:24

My first post here - i find this community chat incredibly helpful, so thanks for all the tips.

I had my prostatectomy on 15 July and have had my catheter removed 2 days ago. I was expecting the waterfall gushing from the first moment..but nothing happened. Since then for the last two days/nights I have not needed any of the boxes of various pads/pants I have bought in advance and, reading through many other posts here, I just cannot believe my luck (I guess there's a first time for everything!) that I have good pee control and I suspect I might have a setback any day now, for as somebody said in the chats, recovery isn't necessarily a linear thing.

What I have noticed is that I'm peeing a lot more than I used to and it's always fairly small amounts. I pee about 10 times a day and 2-3 times at night (never need to go at night before the op). I'm wondering if my bladder hasn't got the same capacity now? Or will it improve with time? I've tried holding on a bit longer but it becomes quite painful to do so and is that the right thing to do?

I also have a general "ache" around the top of the penis which is what pushes me to go to the loo. Is that anyone else's experience?

Thanks in advance for any advice.

User

Posted 01 Aug 2024 at 16:24

My first post here - i find this community chat incredibly helpful, so thanks for all the tips.

I also have a general "ache" around the top of the penis which is what pushes me to go to the loo. Is that anyone else's experience?

Thanks in advance for any advice.

User

Posted 01 Aug 2024 at 22:30

Hi Twelve on,

I am 2 days behind you, having had the op on 17th July. I appear to be the opposite end of the spectrum, and am constantly leaking during the day, although not at night when I am lying down. Gravity obviously plays a part!

I have the same ache at the end of the penis, although it is starting to wear off now. I wouldn't try and withhold a pee at this stage whilst your bladder neck is still trying to repair itself. Just go as often as you need to and enjoy the fact that you are at least peeing voluntarily....

Keep us posted on your progress mate. We can compare notes 👍

User

Posted 02 Aug 2024 at 15:02

Hi Harty,

Many thanks for your message - this continence lark is such a lottery it seems and everyone's story seems subtly different. As I've said in my other replies, I'm not counting my chickens yet though.

I'm now definitely not going to rush trying to improve my bladder capacity - you're right everything is still "under repair". As for the penis ache ( and general "undercarriage" ache, for that matter), I hope it does begin to fade away. I notice it most after I've been sitting in a chair for any length of time. I'll keep you posted so we can compare notes!

User

Posted 02 Aug 2024 at 14:44

Thanks for your message, Peter.

Really useful to know what you had been told about bladder training. I sort of guessed as much but you can never be certain, so thank you.

Good luck to you in your recovery!

User

Posted 02 Aug 2024 at 14:53

Thanks Adrian.

It's really sinking in that I've been lucky (so far!!) continence wise compared with lots of others but no chickens are being counted here!

I will look forward to not having to go for a pee so often at night and any short term discomfort/pain will be worth it.

Good luck with your next steps too - you've clearly been through the mill a bit but reading your detailed story has been so informative of all the potential ups and downs involved, as well as the timescales. Thanks for taking the trouble to do this to help others.

User

Posted 17 Sep 2024 at 09:43

Hi Twelve on,

I hope you are still online, because I am in the same boat as yourself. Same date for the Operation, same issue and frequency with peeing and like you I feel lucky but aware of the fact that recovery is not always a linear thing. I also have the same type of ache as you do. Antibiotics did not help at all.

Btw I had the da Vinci operation, Gleason 3+4, and hopefully now have an undetectable PSA. This will be checked in four weeks time. I know though that the cancer was within the prostate. All other tissue free of cancer.

I am grateful. Yet, I would like to get back to my hobby of running. I have since run 6x12 KM but not without having to dash into a bush every 20 minutes or so.

As mentioned, we both have exactly the same issues and situation at the Moment. Please confirm if you are still online. Maybe we can share tips on how to move forward. Best regards

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User

Posted 01 Aug 2024 at 18:33

Hi Twelve on, I can respond to one point in your post because I asked my surgeon the same question at an early stage. Should you try to 'hold on'? According to my surgeon, you should not be putting undue pressure on your remaining sphincter at such an early stage. The wounds are still healing and bladder training can wait.

You seem to be doing really well (far better than I did!). Good luck to you.

Peter

User

Posted 01 Aug 2024 at 18:53

Hi Twelve on. Welcome to the forum.

You are doing brilliantly. It took me 7 months post op to reach where you are now.

I'm now 18 months post op and can go all night (11pm to 7:30am) without a pee which is even better than I was pre op.

I hope your amazing recovery continues.

Good luck mate.

User

Posted 01 Aug 2024 at 22:30

Hi Twelve on,

Keep us posted on your progress mate. We can compare notes 👍

User

Posted 02 Aug 2024 at 14:44

Thanks for your message, Peter.

Really useful to know what you had been told about bladder training. I sort of guessed as much but you can never be certain, so thank you.

Good luck to you in your recovery!

User

Posted 02 Aug 2024 at 14:53

Thanks Adrian.

It's really sinking in that I've been lucky (so far!!) continence wise compared with lots of others but no chickens are being counted here!

I will look forward to not having to go for a pee so often at night and any short term discomfort/pain will be worth it.

User

Posted 02 Aug 2024 at 15:02

Hi Harty,

Many thanks for your message - this continence lark is such a lottery it seems and everyone's story seems subtly different. As I've said in my other replies, I'm not counting my chickens yet though.

User

Posted 17 Sep 2024 at 09:43

Hi Twelve on,

I am grateful. Yet, I would like to get back to my hobby of running. I have since run 6x12 KM but not without having to dash into a bush every 20 minutes or so.

As mentioned, we both have exactly the same issues and situation at the Moment. Please confirm if you are still online. Maybe we can share tips on how to move forward. Best regards

User

Posted 18 Sep 2024 at 14:40

Hi Steve,

Thanks for your post - although I'm guilty of being offline for a few weeks now, I'm so appreciative of this community to sense check how things are progressing for me and all others. It keeps you grounded.

It sounds like you're making fantastic progress, even getting back to running, and I'm more than happy to share progress reports with you.

As you might see from another post I updated today ref Tadalafil, my follow up consultant appointment was postponed until 15/10, so I have set up my PSA test at the GP for a few weeks before that - fingers crossed and good luck with your PSA too.

So, the nagging pain in penis and undercarriage disappeared of its own accord after a few weeks - are you still suffering this?

My new pain(!!) is at the top of my left leg, or even in my lower LH buttock. I'm not sure if it's related to the prostate op or not, as I have previously had the occasional back problem in that area, but this is currently occurring every day. I've never had sciatica but I'm guessing it could be a mild form of this, as the pain can extend from lower back down the back of my left leg above the knee. It started when I increased my walking post op to 3-4 miles/day but it has knocked my confidence a bit now and I'm not walking as often until it eases off.

I continue to have good fortune with my continence - most nights I can go though until the morning without having to go to the loo. During the day, I'm not needing to pee quite so often now but it's amazing that the force of the flow when I do go is something I haven't experienced since I was a teenager! So I have to make sure I'm aiming in the right direction - if I can find it after the post op shrinkage !! :)).... :((

One thing I have noticed is that when I need to poo, the pressure to pee is immense and it's probably the nearest to having "an accident" and so makes travel and out of home activity a game of chance! Same for you?

As for ED - I fear not many nerves (if any!) have been spared but I continue to live in hope, and keep taking the Tadalafil - until I speak to the Consultant anyway!

I've prattled on too much probably but I hope you find a useful reference and would be interested to know how you continue to progress.

Best regards

Jim

User

Posted 19 Sep 2024 at 04:24

Dear Jim,

(Dear Group)!

great to hear back from you.

Let me see if I can piece a proper reply on my mobile. I am traveling. Yesterday I was driving for a total of 8 hours, and what a relief it was only to pee twice during that time!

Re: Tadalafil

I was told to take a pill daily for 3 months. I have noticed a positive difference. Strangely when I am sitting on the loo, number 2, but also when I tried to arouse myself. But it is too early as I am still struggling with the ache in the penis. I don’t want to aggravate unnecessarily.

Did you take any medication for the ache? Or was the improvement a natural course?

I have noticed that the ache is quite strong when only a small pee is there, despite the urge to go to the toilet. A strong, good pee is usually a relief and pain free.

How much water do you drink daily? I try to drink about 1.5 Ltr. But including coffee or tea.

Re: your new pain

I had the same issue when I was released and was at home. My first walk was only 3 KM. I just made it home! The pain was immense! In the area you described except the back. My back was fine. But I basically crawled the last hundred Meters. But: I increased this distance daily. After about 10 days I could walk 10 K‘s without any issue, since then no problems at all. As mentioned I am running again (although with new issues unfortunately). Btw the pain during walking (when I finally made it home) disappeared after about 5-8 minutes when I found some position to sit or lay down.

I am not a doc, but I would suggest that you push yourself again, stop when you reach the pain barrier, and try again a day later, to improve on the distance.

Re: Continence. Congratulations!

I am not so successful, I am still trying to find the right pattern of drinking. Coffee and water, even in modest amounts, will result in 13-14 pees a day. One Guinness in the evening will result in 2-3 trips during the night. If I don’t drink anything after 6pm I can usually sleep for five hours before I have to go.

Did you have a drinking schedule or was the improvement a natural course?

Fortunately I am 99% dry, just need one pad a day. But same issue with aiming!

Re: One thing I have noticed is that when I need to poo, the pressure to pee is immense and it's probably the nearest to having "an accident" and so makes travel and out of home activity a game of chance! Same for you?

Oh yes! I try to note in advance when the public toilets are. I have a pee bag with me, but I must admit I have had to run to the bushes a couple of times. The pressure is strong, and I know I have five minutes to find a solution! Same as you. I am not sure if it’s an issue of an over active bladder or part of the healing process..

Re: As for ED - I fear not many nerves (if any!) have been spared but I continue to live in hope, and keep taking the Tadalafil - until I speak to the Consultant anyway!

Same here. My Operator included tips and advice in his report. When I am home, I can forward his tips for info. Maybe there is something you / anyone can try.

I believe the operation with the da Vinci was successful, although I have to wait for the next PSA result. I am very grateful that I am where I’m at, but I would like to see the end of the aching in the penis, and finding a good drinking schedule as recommended by the doc. The day before yesterday I drank too much water ( about 1.5 Ltr) on top of two morning coffee’s and two teas at lunch: this resulted in 22 trips to the wc. Btw I keep a record of when I need to go.

Best regards Steve

User

Posted 19 Sep 2024 at 09:04

Originally Posted by: Online Community Member

I was told to take a pill daily for 3 months. I have noticed a positive difference. Strangely when I am sitting on the loo, number 2, but also when I tried to arouse myself.

Hi Steve.

I'm not on any ED tablets as they are potentially dangerous acting against my heart tablets. Weirdly, however, like you, I've found I get a semi on whilst having a poo.

I put up a thread on it and surprisingly a few blokes have found the same.

https://community.prostatecanceruk.org/posts/t29926-Does-anyone-else-get-a-semi-whilst-having-a-poo

Edited by member 19 Sep 2024 at 09:05 | Reason: Additional text

User

Posted 19 Sep 2024 at 19:13

Thanks for the link Adrian, also for reading my post.

The thread is informative and useful of course. Many thanks, Steve

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