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22 months post Radical Prostatectomy,still having side effects

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Posted 11/12/2010 7:58 AM (GMT 0)
Hi everyone!
It's me again, doing my periodic visitation and inquiry asking the same old question....Has the incontinence for the almost two year mark has gotten any better for some? I'd like to think my Urologist was sincere in telling me that this will go away,and I will not be wearing diapers for the rest of my life. I am 56.
Yes, I am very grateful that I was diagnosed early and took the Doctors' recommendation on having the nerve-sparing robotic procedure, but I'm still in the same boat almost two years later with the ED and daily supply of DEPENDS. (Costco - 72 for $42.00 + they had a $8.00 coupon last month...whoopee!)

People on this site have told me time and time again, to be patient and this all will work itself out, but why is the ED doc trying to talk me into an implant, if I someday will get the blood flow back again....very suspicious. I just don't want them to lead me on and giving me false hope. I keep thinking the nerve-sparing surgery is exactly that. I don't want to have false hope, and I know it's not going to be the way it was pre-op, but a guy can dream, can't he?

So, if anyone else out there in the 20 to 24 month range suffering with both the ED and incontinence, I'd like to know I'm not alone, and maybe get some hope, that it will get better.


Also, and most importantly, I would ask if those of you who had the catheter longer than usual (for me, seven weeks) If you get the feeling that after this surgery,you ended up with some sort of scar tissue in your limpy buddy?


Thanks!
idea shocked

Post Edited (unhappycramper) : 11/20/2010 2:48:28 PM (GMT-7)

Posted 11/12/2010 8:28 AM (GMT 0)
I would guess that at this point you got what you got.

Do ED meds work and or have you tried Trimix?

Posted 11/12/2010 12:47 PM (GMT 0)
22 months, thats brutal. I am 11 months post RRP nerves spared and I am totally incontinent plus totally impotent. By totally incontinent I mean I haven't peed one time during the day since my operation, it all dribbles out.
I went last month to Dr. Timothy Boone , incontinence specialist, at Methodist in Houston and the answer was I am done. He did a urodymanics which indicated that my bladder will not hold any pressure to speak of and cystoscopy showed there was no other problems that might be causing this condition. The cystoscpopy did show I had a very short sphincter. He didn't say it was the short sphincter that was the main cause but certainly it could be the reason. Whatever the reason does not matter much, I guess, as he said I needed the artificial sphincter put in. I am scheduled for that operation this jan. I am also getting the penile implant done at the same time. I was barley functional errection wise before the RRP and as I guessed, the RRP finshed me off.
I choose to go to a specialist for incontinence rather than my local uro or my RRP surgeon so that I would feel like the answer I got was final.
about those depends and pads, i gave that up 6 months out and went to a condom style catheter and leg bag during the day and pads at night and I was much happier with this. I also was refered to a urinary physical therapist who worked on me for three months having me do all sorts of kegle and ab exericises and after three months the pelvic muscles were good and strong but no help at all for my condition.
I am REALLY sick of pads leg bags ect at 11 months, and 22, well that's brutal.
If were you, I think, I might still be hopeful if I had some control to work especially if you haven't done the phsyical therapy routine, 22 months?
about the artificial sphincter, if by some miracle I become naturally continent after the sphincter is implanted then I could lock the device open and not have to use the little pump to pee. I would be really happy if that happened but i am not going to be holding my breath waiting. I think my new pumping system will be permanet and i think it way be way better than my present situation.( if it works)
I am sorry to here of your condition and i hope you can get some relief.

ps, i just read more of your story on the viperguy, "worried as crap" thread and i guess the things i offered were plouged ground and maybe the AUS hopefully can be avoided in your case.

Posted 11/14/2010 5:46 AM (GMT 0)

knotreel:

Some men claim that they have achieved a full recovery within weeks after surgery; others say that it took them 18 to 24 months before they had a full recovery.  Others say that they have a good enough recovery that with the aid of the ED pills they have a fully successful erection. 

I ended up with ED and never did have full recovery either.  I tried every option available (i.e.: pills, pump, shots, etc…) and finally ended up getting a penile implant which ended up being the best choice for me.

I now have a near normal sex life.  If you have tried all the other options available and they don’t end up being a successful option for you, there is still hope.

With a penile implant I now can function like when I was a much younger man.  I can perform whenever I chose, wherever I want and as often as I wish.  I don’t have to worry about filling a prescription or taking a pill and waiting for it to take effect.  I don’t have to detract from an impromptu moment by having to take along my equipment or getting it out and getting pumped up before hand (and dealing with a truly abnormal feeling erection).  In order to react to the moment, I no longer have to go to the refrigerator to get my meds and needles, prepare the shot, take the injection and then waiting for things to work (or wait for it to stop working after things are completed).

My wife of 37 years used to call me “Ever Ready Ted”.  Now I am living up to her expectations!!

I know that some men think this is not an option that they would never chose, but it has been the best thing for me and I am greatly pleased that I made this choice.

Sincerely,

Ted.

Posted 11/15/2010 3:52 AM (GMT 0)
I had robotic surgery Sept 10, 2009 and I am in the same boat as you are in. I am using 2-3 pads per 24 hour period and no erections at all. I too am getting tired of hearing be patient but I guess I don' t have any options. I have asked my uro about Bout the sling and he says I am getting ahead of my self. My urn will not start on the ED until I stop leaking.

Best of luck, you are not alone.
Len
Posted 11/15/2010 6:30 PM (GMT 0)
LenB

I just got through the recovery time period for the Advance Sling after two years of mild(1-2 pads a day) incontinence. I think you need to wait more than the year to determine if it will resove itself, but I wanted to let you know that there is successful incontinence relief out there. I am dry as a bone.

I am assuming that you have gone through physical therapy. If not, I advise it. If nothing else you will understand the functionality of your sphincter muscle. If you are able to control the sphincter(one indicator is that you can control the  stream when urinating), you do not have a lot of scaring of the sphincter and have a fairly low amount of pad usage, the Advance Sling has a great success rate when done by an experienced doctor.

Good luck to you. I understand your frustration. I feel like I have returned to a whole different lifestyle where I can have a glass or two of wine without "being wet", that real intimacy without a condom is a reality, that I don't feel like my private parts are being pickled and that I don't have to be  sit uncomfortably through a long meeting.

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