6 days post op

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User

Posted 29 Jan 2023 at 23:13

Hi Mal, we (well OH) is 1 year from dx and 10 months from RP. The installagel was great and really hits the spot as it were. Our DN sorted it out and it was a godsend. Made the catheter much more comfortable. You will feel so much better once the caterer is out. Take things steady and follow the advice. My OH has made a great recovery. His wound took ages to heal which was more of an inconvenience than anything else. He was virtually continent once catheter came out and religiously does his pelvic floor exercises with the squeezy app. ED is a different matter, little steps. We are just about to have test no 4 and keeping everthing crossed. Best wishes x

User

Posted 30 Jan 2023 at 13:57

I'm managing with the KY jelly (Instillagel prescription only) and my god did it make a difference, straight away. Realised its the catheter tube in the end of penis making me so dry. Felt like a lot of needles in the tip and gave me a few sleepless nights. Wish i had known about KY, Instillagel from the start and i'm going to ask Macmillan nurse to consider promoting this issue to men before they leave the hospital as the dryness leaves you in agony.

I have spoken with the Urology nurse at local hospital regards removal of catheter and they are calling me back sometime today so fingers crossed.

A chap who had the exact same operation as me and shared the same ward has been in touch throughout our healing process and is also wanting to move forward.
We are hoping to catch up for a Tea soon as we live reasonably close to each other. We have shared our issues (very similar) and been trying to help whenever we can, Become good pals actually and have shared a few laughs about all this, which has really helped us as we have both had low moments at times but are eager to move onwards and upwards.

Edited by member 01 Feb 2023 at 22:39 | Reason: Not specified

User

Posted 07 Feb 2023 at 23:46

Mal, I found I was dry at night from day one but it took a while to get daytime continence back. It happened gradually over 6 weeks or so then I just realised I wasn’t thinking about it so much. For me the leaking was one of the worst parts because I couldn’t see an end to it, but it came.

Coming up to 5 months post op and have been about 98% dry for about 2 months. I do Pilates style exercises every morning for about 20 mins and have started running properly again, as well as regular surfing (started that after about week 9). I drink alcohol of all sorts but not huge amounts. I got aching pains in the barse (technical term for the perineum area) which the surgeon said was down to being too enthusiastic with the PFEs! He was right so I pulled back from doing so many but clearly it helped get me dry pretty quickly.

Everyone is different so listen to your surgeon, nurse and your own body. Don’t push things too quickly but enjoy the small victories. If you were fit and active before, I imagine it makes recovery easier.

Sorry you’ve found yourself on here but it’s the best place for support.

Good luck with what comes next and all the best for a quick recovery.

Nick

User

Posted 08 Feb 2023 at 10:55

Hi Nick, glad to here you are doing so well on your road to recovery - surfing! Wow good on you. Regards alchohol, i'm just on the herbal tea currently with a good cuppa first thing each morning. Good to here your out running Nick, boosts my confidence a bit as i do enjoy getting out cycling even though its just with the younglings nowadays.

I know its early days but so far have had dry nights apart from the very first night. Yes i must admit, i keep having little squirts throughout each day and put this down to moving around so much, bending, squatting etc. I'm having to train my pelvic floor muscles to respond before doing anything and have to remind myself all the time to do it. Currently following the squeezy app as advised by Probbo and this has proven very usefull so far.

Ive been concerned about little fella and erections from before the operation (Da Vinci) and surprisingly woke up around 3.00am for a pee with a good 3/4 erection! First time post op thats happened - fingers crossed. Yes my perenium feels like ive done a 20 mile bike ride so just taking things steady,

I opened the pack i received from nhs (Macmillan nurse) regards a Stoma 2 penis pump kit (hand pump not battery type) last night and, after initially being confused-amused-concerned by the whole setup, can see thats going to be a whole new journey, especially as i have been reading mixed responses to it.

Staying positive and getting more gentle walks in, squeeze - release.

9/2/23 - Not sure it its a combination of the amount of water i'm drinking and the cold weather but peeing a lot today. Good thing is i can feel it and hold for a short spell before going to toilet as opposed to just peeing myself!

Edited by member 09 Feb 2023 at 17:08 | Reason: Not specified

User

Posted 09 Feb 2023 at 20:17

Great that you have such good bladder control so early. I found the wetting myself bit pretty upsetting, especially when out and about but it definitely improved fairly quickly.

And excellent that you are already ‘standing to attention’! I’m nowhere near that, 5 months in. I haven’t spoken to anyone about pumps, maybe that’s for the next consultant appointment at the end of the month.

good luck!

Nick

User

Posted 09 Feb 2023 at 22:23

I am thankful that I have a hand pump rather than battery. Feels like I am in control. To get a natural semi erection so early bodes well for you.

User

Posted 10 Feb 2023 at 10:52

Nick, i must admit i am a little surprised regards my bladder control but nights are better than days so far. It is unsettling to pee unexpectadly during the day as its caught me out a few times whilst out for a walk but working the pfe's as mentioned. Glad you managed to get on top of this. As i've since found out, we all react differently so i can see its going to take time.

Regards a pump, the Macmillan nurse put in a referal form to local health centre and they ordered it for me. Apart from the fact i had to chase it up and find where it was, eventually tracking it down to local pharmacy, i'd have a chat about moving to the next stage as it were.

Edited by member 14 Feb 2023 at 11:09 | Reason: Not specified

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