Ongoing incontinence and bleeding

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User

Posted 10 May 2017 at 10:33

Hi. After radiation treatment I had damage to my bowel and bladder, together with ED, incontinence and impotence. My bowel was cauterised three times and although there is still some pain the bleeding has stopped. Since last October I've had increased bleeding when I pee and some blood clots which have been painful to pass. I was referred to a fast track clinic in Urology, had a flexible cystoscopy and a CT. The registrar recommended biopsies on a red ringed area in the bladder. I had a rigid cystoscopy in mid March. I am not sure still what was and was not done. But, since then I have gone from one Level 1 incontinence pad lasting 24 hours to 4 or 5 Level 2 pads each day (I have been doing my pelvic floor exercises with no improvement after 8 weeks.). The bleeding is worse and I have experienced several really painful large blood clots which have taken up to 24 hours to pass.

I wonder if anyone has had similar experiences and if they have any advice about how to deal with this.

Many thanks.

User

Posted 10 May 2017 at 12:56

Hi, I think you need to see your GP and ask him/her to go through the report of the cystoscopy with you and then decide whether you are supposed to be being referred on elsewhere.

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User

Posted 11 May 2017 at 21:32

Hi Rob,

See Profile,

I still suffer bleeding from my penis when I strain doing No 2s . large blood clots sometimes they pass , if they don't I use a

catheter I am 100 % urine incontinent , 6/ 7 pads a day , no libido , no erections , life's a b**** , but I am still here

no one listens so I don't tell anyone any more.

Good luck

Barry

User

Posted 15 May 2017 at 12:01

I had robotic surgery in Feb 2015. Incontinence wasn't too bad - off pads altogether now, though sneezing is an issue. Also, if I have a few drinks of alcohol, I may wear one to bed just in case, as every so often I may wake up wet. I did have blood in my urine up to Dec 2016.

Re the blood, it appears that I'm getting infections from "somewhere" which my surgeon says was causing the problem. However, in saying that it was in Dec 2016 that I had my 3rd cystoscopy to find the problem, which he did - 2 migrating plastic clips. Since the removal of those clips, no more blood in my urine.

But (always a but), I'm still getting bladder infections, with no visual signs of blood, though the tests show traces of blood. My surgeon cannot say why I am getting these infections, and tomorrow I am to see an Infections Specialist. I never had bladder infections prior to my original surgery in 2015.

Good luck!

Les

User

Posted 08 Jun 2017 at 14:43

Thanks Lynne. Between my Specialist nurse and my GP I now have a referral to a bladder specialist.

User

Posted 08 Jun 2017 at 14:45

Thanks Barry. Similar feelings and resignation. Just really ticked off that a simple procedure has made things so much worse.

User

Posted 08 Jun 2017 at 14:48

Thanks Les. I hope they can help with the infections. In my case infection was ruled out. I'm seeing a bladder specialist in a couple of weeks. We'll see what happens then.

Rob

User

Posted 14 Jul 2017 at 10:40

I saw a bladder specialist who was excellent. She recommended six treatments with hyaluronic acid to put a new layer over the radiation damage for the bleeding. She also referred me for Video Urodynamics, which I had on Tuesday. It turns out that my urinary sphincter is ineffective. Apparently scar tissue was keeping the incontinence low and the rigid cystoscopy broke through the scarring. I'm being assessed for a Master trial involving the Male Sling versus Artificial Urinary Sphincter. After some research my wife and I have decided to go for the AUS anyway as it is statistically more successful. Now comes the usual waiting before the hiatus. As Kurt Vonnegut Jr. so often says, "So it goes." Just hoping that the AUS will be as successful for me as for some others and the increased incontinence turns out to be a blessing in disguise.

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