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Arousal and incontinence

User
Posted 22 Mar 2019 at 09:45

Hi all


Quick bit of history – diagnosed with Gleason 9, PSA 22 T3a N1 M0 and had Da Vinci surgery Jan 2017. Positive margins on the bladder neck and one lymph node with cancer, so straight on to Bicalutamide and adjuvant radiotherapy on bladder neck and lymph node sites.  PSA been <0.003 ever since.


And now on to the lasting side effects of the treatment! Lymphodeama (mainly left leg), slight residual breast swelling, reduction of penis size, fluctuating libido and… variable incontinence.  And this is what I am wanting some info on.


The incontinence takes two forms – the first is sudden leaks, a general urethra emptying moment. This normally happens when I’m sitting cross legged or on uncomfortable cramping chairs, and I have decided it is down to pressure on the perineum thus pushing the remaining sphincter valve.  Just a guess though.  It’s something I’ll have to live with.


My big concern is incontinence when getting sexually aroused. The moment I start to feel turned on, aroused, keen, my urethra lets go.  Repeatedly.  This REALLY puts the damper on any sexual activity.  Annoyingly, I can now achieve full erections and ED has been sorted, but libido is non-existent as I know what happens should I get even an aroused mind.  It’s that instant.


I have spoken about with my urologist, who has said it is Climacturia and there is no cure. It’s not.  Climacturia is when urine fire backwards into the bladder at the point of ejaculation.  That is NOT my issue.   I can get aroused and climax when lying (relaxed?!) on my back with no leakage whatsoever, but any other position results in huge leakage.


So… over to you, wealth of knowledge. Any guesses?  And perhaps more to the point, can anyone recommend another urologist I could speak with (privately if necessary) who would be willing to apply some listening to the situation?  If so, please do message me, I would be most grateful.


Thanks for reading, and I wish you all the best with your own journeys.


Cheers


Graham

User
Posted 26 Mar 2019 at 10:31

CONGRATULATIONS to you and your wife mate. What a cheerful post to read on this website. 


My ex girl friend whom was/is married to somebody else (I'm a ex failed Gigolo)


After my RP operation she left me:)for good.


Its lovely to hear that there are some great supportive ladies out there not as shallow as my ex!


All the best to you both for your future. 


D.R

User
Posted 28 Mar 2019 at 10:12

Hi Francij1.  That's great news for you.  Many thanks for sharing, and it gives me some hope as well.


Most of all, congrats and my very best wishes to you both.

User
Posted 25 Mar 2019 at 22:49
I am still improving in the leaking during arousal stage and I am nearly 4 years down the line. In fact it was 2 years ago I met my now wife and pissed myself while smooching while drunk - that is a combo to avoid!!
We got married on Saturday, spent most of the day drinking Prosecco etc and managed to avoid any dampness during smoochies!! Definitely carries on improving.
User
Posted 25 Mar 2019 at 23:36
Brilliant - congratulations francij
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
User
Posted 26 Mar 2019 at 05:12
Congratulations to you and your wife francij and all the best for the future

Cheers
Bill
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User
Posted 22 Mar 2019 at 15:29
My diagnosis very similar to yours ! But I ditched the RT as my numbers were really bad. I recovered continence wise very very quickly and was lucky. However the odd yawn would cause a leak and YES — just at that moment when getting jiggy jiggy I would sometimes let go. I’m 4 yrs post surgery now and fully recovered using daily Cialis with no problems. However if I get a really hard erection using extra viagra or if I use an injection, then there is a bit of leakage tbh which a towel sorts out. My advice maybe give it a bit more time , as it was a problem for me but rarely now.

If life gives you lemons , then make lemonade
User
Posted 22 Mar 2019 at 15:42

Sorry this will be little help but I have the same problem with leaks on arousal, although it's not too much.  I find it helps to empty the bladder first although it sometimes happens in the street and I need to divert my thoughts.


Sometimes it doesn't happen which might be sign it's improving.


More pelvic exercises might help, must admit I'm not so regular with them as some.

User
Posted 23 Mar 2019 at 00:49
it does seem to get better over time, like you I could only "risk it" on my back as other positions I would leak and then "come" with piss - mm tasty not!!!
Now it's just the odd dribble on arousal or maybe one squirt occaisionaly!! Strange how we have taken to bath time fun now simply doesn't matter!!
User
Posted 23 Mar 2019 at 10:46
i don't think there is anything a urologist could offer as a solution - you learn to work round the problem and hope it gets better with time. Sex in the shower is one solution, as is the liberal scattering of towels. If you only leak small amounts, would you wear a condom?

You could request referral to a physiotherapist to check that you are doing the pelvic floor exercises correctly. It seems your urethral valve is working consciously but not unconsciously OR the valve is not working but during most activity, your pelvic muscles can compensate.
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
User
Posted 23 Mar 2019 at 12:11
Hello Graham

I think the process you describe where fluid fires back into the bladder at the point of climax is retrograde ejaculation. It’s seminal fluid which enters the bladder, so obviously not relevant in your case.

Climacturia is really as your urologist described. I’m told it does improve over time, and in the meantime trying to ensure an empty bladder at the key time is the most effective treatment.

Wishing you the best of luck.

User
Posted 25 Mar 2019 at 09:19
Hi all

Thanks for the replies. I’m not sure I’ve described this issue properly – I’ve no particular issues with wearing a condom for sex if needs be, but the problem starts well before then. I kid you not, the slightest thoughts of arousal, and the tap opens. The chance of getting to the sex stage are severely washed out before that by me sitting in urine soaked trousers. It is grim. Really not a recipe for any form of romance.

Yes, emptying bladder before any thinking of a sexual nature is done, bu t makes no difference. My urethra always finds that little (!) bit more from somewhere. And repeatedly.

As I’m now two years on from the end of RT, I’m guessing this is as good as it’s going to get, short of new revolutionary ideas. I have heard varying opinions about the effectiveness of pelvic floor exercises two years after RP and RT. Would it really solve the issue? If the general thought is yes, I’ll start the regime again.
User
Posted 25 Mar 2019 at 10:50
I’m not sure whether they work or not , and they need to be done properly. I just got into the habit of doing them whenever I could — driving , reading the paper , on the phone etc. Sorry you in this state.

If life gives you lemons , then make lemonade
User
Posted 25 Mar 2019 at 11:34

Originally Posted by: Online Community Member
Hi all

As I’m now two years on from the end of RT, I’m guessing this is as good as it’s going to get, short of new revolutionary ideas. I have heard varying opinions about the effectiveness of pelvic floor exercises two years after RP and RT. Would it really solve the issue? If the general thought is yes, I’ll start the regime again.


 


Pelvic floor exercises will not help a man whose urethra, valve or sphincter have been permanently damaged during the treatment. However, since you are dry most of the time, it is unlikely that you fall into that group in which case a referral to a physio might be your best option ... it sounds like you can control your bladder muscles voluntarily but not involuntarily so some bladder retraining / PFE work needed. 

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
User
Posted 25 Mar 2019 at 20:52
Thanks all.

Righty ho, I shall start the PFE and internal gurning regime again. Happy days!

User
Posted 25 Mar 2019 at 22:42
Get a referral to a physio
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
User
Posted 25 Mar 2019 at 22:49
I am still improving in the leaking during arousal stage and I am nearly 4 years down the line. In fact it was 2 years ago I met my now wife and pissed myself while smooching while drunk - that is a combo to avoid!!
We got married on Saturday, spent most of the day drinking Prosecco etc and managed to avoid any dampness during smoochies!! Definitely carries on improving.
User
Posted 25 Mar 2019 at 23:36
Brilliant - congratulations francij
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
User
Posted 26 Mar 2019 at 05:12
Congratulations to you and your wife francij and all the best for the future

Cheers
Bill
User
Posted 26 Mar 2019 at 10:31

CONGRATULATIONS to you and your wife mate. What a cheerful post to read on this website. 


My ex girl friend whom was/is married to somebody else (I'm a ex failed Gigolo)


After my RP operation she left me:)for good.


Its lovely to hear that there are some great supportive ladies out there not as shallow as my ex!


All the best to you both for your future. 


D.R

User
Posted 28 Mar 2019 at 10:12

Hi Francij1.  That's great news for you.  Many thanks for sharing, and it gives me some hope as well.


Most of all, congrats and my very best wishes to you both.

 
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