Recently diagnosed and treated

User

Posted 07 Jan 2021 at 15:25

Hi,

I was diagnosed with PC last October. I am 54, slim, fit and with no other conditions.

Current diagnosis is T2b/3a pending on pathology of the prostate and nodes. Gleason is 3+4. MRI did not pick up cancer in adjacent structures, only right side of the prostate. Bone scan was clear. They took 26 biopsies, 14 on the right, all positive for PC and 12 on the left all negative.

I had robotic-assisted RP last December. Nerves could be spared mostly on the left side. Catheter was removed last week. I am at home recovering. Currently trying to control the incontinence. At night I need to go to the toilet 5-6 times or every 90-120 minutes. I don’t know whether this is normal, my catheter was removed just 9 days ago.

My Dr prescribed me Tadalafil and told me to start treatment last week to initiate penile rehabilitation. ED is evident.

I would very much appreciate any comments on the post-operative recovery: , eg, when to expect improvement on incontinente, or being able to sleep without getting up so many times. ED seems to last months or even 1-2 years, so drugs help?

Many thanks!!!

User

Posted 11 Jan 2021 at 14:31

Mickey23

I think everyone is a bit different and respond to some of the medications differently as well.

To begin with I took 5mg of Tadalafil daily and this seemed to help get things stirring. I'd then take viagra for events

Then after a bit I just used the viagra for events.

After a while I didn't feel I needed it so stopped taking anything.

User

Posted 08 Jan 2021 at 09:35

When my catheter came out I was initially a bit surprised about the amount of leakage but kept doing the PFE s (although wasn't that good at them) and for me walking everyday which I found really helped.

I think you will be surprised how much things improve as the weeks go by so as others have said don't worry

I think there is a lot more variation on the ED side and it definitely takes longer and has much more of a mental aspect. For me I found

1) Be patient. Accept things won't be back to normal overnight-but the chances are they will get better

2) The medication does help. I took the Tadalafil daily for several weeks and it definitely helped. I found though that viagra worked best for me for events

3) Talk to your partner. We tried things, didn't get worked up if things didn't go quite right and adapted and improvised along the way.

Good luck on the recovery

User

Posted 08 Jan 2021 at 09:54

Hi Mike

thanks a lot for the advice. I certainly agree with the three points and will work on these.

I have found this site extremely helpful to deal with questions and reduce anxiety. Thank you all for sharing your experiences and providing helpful advice.

Show Most Thanked Posts

User

Posted 07 Jan 2021 at 17:52

Hi Henry,

I too was making regular nightime visits to the toilet after my catheter was removed, but this improved over time. I try my best not to drink after 7pm now and do my pelvic floor exercises religiously, but even a year on I still need to get up once a night.

ED wise, a few are lucky, but it's a long haul for many, so try not to get disheartened, it really takes time for nerves to heal. I'm on Tadalafil too and am making reasonable progress now.

Good luck with your recovery.

User

Posted 07 Jan 2021 at 17:59

Henry

Are you doing your pelvic floor exercises and doing them correctly ? Standard answer it is early days, some guys are dry from day one some take a couple of weeks others unfortunately take longer, but there are lots of options. Can you stop your flow mid stream, if yes it is a good sign that your mechanics are intact or have recovered already. Don't stop mid stream on a regular basis it's not good for the bladder.

It can take days or years to recover from ED. The main message is never give up. The thought that if you haven't recovered in two years you never will have been disproved by many on here. Not easy in the current situation but get some ED help if you can.

Early days so stay positive.

Thanks Chris

Edited by member 07 Jan 2021 at 18:00 | Reason: Spelling

User

Posted 07 Jan 2021 at 18:15

Thanks a lot for the swift replies and encouraging words. I really appreciate these.

Yes, I started the pelvic floor exercises as soon as they removed the catheter last week. I am mostly ok during the day, using just a pad attached to the underwear which remain mostly dry. However, I need to go to the toilet very frequently and the maximum volume I produce is around 200 ml. It is as if the bladder has shrunk! As you say it is early days.

Regarding the ED, i agree, the nerves must be quite sore, as everything else down there!

i try hard to keep a positive outlook, it is the only way forward!

Thanks again for your comments. It is comforting to know there are others out there that have walked the walk. Thanks!

User

Posted 07 Jan 2021 at 18:57

Henry

It would be very unusual for the bladder to shrink in such a short time. I did PFEs for 4 months before my op so they were strong. Part of the bladder retraining is to hang on that little bit longer each time you get the urge. Holding 200ml is an encouraging sign.

Keep at it.

Thanks Chris

Added how much do you urinate each time during the night ?

Edited by member 07 Jan 2021 at 18:59 | Reason: Not specified

User

Posted 07 Jan 2021 at 18:59

RP one month ago? Get back on the couch for a few weeks and stop worrying.

User

Posted 07 Jan 2021 at 19:14

Thanks Chris.
At night it ranges from around 100-240 ml. So possibly around 1L or so. I have always drunk a lot of water and fluids during the day, and I am restricting a little bit water intake after 8.00 pm

The comment about go back to the couch and stop worrying made me and my spouse laugh!!

Thanks everyone

User

Posted 08 Jan 2021 at 09:35

I think you will be surprised how much things improve as the weeks go by so as others have said don't worry

I think there is a lot more variation on the ED side and it definitely takes longer and has much more of a mental aspect. For me I found

1) Be patient. Accept things won't be back to normal overnight-but the chances are they will get better

2) The medication does help. I took the Tadalafil daily for several weeks and it definitely helped. I found though that viagra worked best for me for events

3) Talk to your partner. We tried things, didn't get worked up if things didn't go quite right and adapted and improvised along the way.

Good luck on the recovery

User

Posted 08 Jan 2021 at 09:54

Hi Mike

thanks a lot for the advice. I certainly agree with the three points and will work on these.

I have found this site extremely helpful to deal with questions and reduce anxiety. Thank you all for sharing your experiences and providing helpful advice.

User

Posted 11 Jan 2021 at 13:16

Do you need to take tablets every day to help improve ed?? Sorry, I mean does everyone, will I?? I dont no what it is yet, my wife has explained but I think I'll be using the pump daily

User

Posted 11 Jan 2021 at 14:31

Mickey23

I think everyone is a bit different and respond to some of the medications differently as well.

To begin with I took 5mg of Tadalafil daily and this seemed to help get things stirring. I'd then take viagra for events

Then after a bit I just used the viagra for events.

After a while I didn't feel I needed it so stopped taking anything.

User

Posted 14 Jan 2021 at 15:19

Hi Henry,

I had my prostatectomy on 25th November, I was like you after the catheter removal during the night frequent trips, but I think this was in part not wanting to wet the bed.

I am now down to once a night which for my age 68 is a win win, I am now 98% dry all day maybe a slight leak sudden movement or bending, never had a leak at night went to many times, the ÈD part for me not there yet but I had Retzius nerve sparing so hopeful, I have always been a fitness fanatic, so shocked when I was diagnosed 2017 Gleason 6 grade 1 T2A, was on Active surveillance for 3years but decided to have surgery no regrets, good luck hope you make a full recovery.

User

Posted 14 Jan 2021 at 17:24

Hi Daily,

Thanks for your mail.
I have noticed I do not need to get up so many times. 3 times two nights ago, 4 yesterday. I am controlling my water intake from 7pm, the problem is I usually drink a lot of water! The urine volume is also slowly increasing.

incontinence us mostly under control. Like you, I leak a few drops during the day and possibly at night. I have noticed a bit of blood in these drops as the pad gets red stains. It is not a lot of blood, just enough to stain those few drops. I stopped injecting the blood thinner 4 days ago so hopefully bleeding will stop. No improvement on the ED front, but it is early days. I also had bilateral nerve sparing, fingers crossed.

Thanks again and I wish you a full recovery!

User

Posted 23 Mar 2021 at 10:42

It’s early days still, so don’t worry to much. I’m your age and quiet fit also ,I had robotic surgery two years ago next week, and I’m still on the mend. Keep on doing your pelvic floor stuff and I’m sure it will improve. I sometimes have a bad day even now, with a bit of ‘dribbling’ especially when it’s cold or lifting heavy loads. Mostly its all good now,( just be careful with alcohol), ED. that’s taken a lot longer, and it’s more frustrating, I’m taking sidenafill twice a week and we are getting there , but I was told it’s a slow drive !!!... good luck, stay positive, it could be a lot worse .

Ian

User

Posted 23 Mar 2021 at 11:40

Hi Henry

Blood thinners ?? How much have you been prescribed then ?

You give impression you are fit and very active. I injected for about 10 days .

Is it 3 mths since your op ?

Curious ? Are you in at risk DVT category then ?

Forum is great, as unless you mentioned that , no reason to see anything different. The urethral/bladder join is key obviously, Don't want scarring.

Regards Gordon

User

Posted 23 Mar 2021 at 14:09

Hi Gordon and Ian,

I was prescribed blood thinners for 28 days after surgery. Actually I stopped at say 24 because I was already quite active and had blood in my urine.

i realise you are answering my post from January Things are improving in all fronts, slowly. The magic words are to be patient and keep positive and talk about things

Thanks again and keep on recovering!

User

Posted 23 Mar 2021 at 18:36

Hi Henry,

Yes. Correct. I didn't notice your post date, as only read the recent poster. So 24 days.. ok. I thought you had been taking thinners for 3 mths lol..

Regards Gordon

User

Posted 06 Apr 2021 at 22:44

Hello Daily, I am 18 months on AS. What made you decide to have surgery?

User

Posted 14 Apr 2021 at 08:44

I’ll answer that Timbo. 😂. I had a radical prostatectomy daVinci style 18 Mar 21. Reason, get shut of contained cancer in right lobe, and rid myself of life-long prostatitis. So far, job done. Incontinece avoided, ED mission about to start with penile rehab.

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