sjaeger172004 Posted December 24, 2023 Share Posted December 24, 2023 Been diagnosed with under active bladder and urologist next month is giving me Botox at the prostate and urethral sphincter. Has anyone had this done as it is I tend to store 800 -1200mls before I feel it if I don’t have overactive symptoms that day. my private continence nurse and public health urologist has divided me on different treatment plans as urologist refuses to communicate with continence nurse Quote Link to comment Share on other sites More sharing options...
Slomo Posted December 25, 2023 Share Posted December 25, 2023 I've had it done, twice. My issue was severe urge incontinence with a neurogenic dyssynergia sphincter. Basically, I'd get a painful urge to go, but when I tried to relax my sphincter to go it would clamp down shut instead. I had to strain and push to pee, which was causing other problems too. I first had the botox injected into my bladder wall lining to try and calm the urges. It did work, except the botox also deadened my sphincter muscles, in their default clamped down mode, which made it even more difficult for me to pee. I ended up with an indwelling catheter for 3 months while it wore off. The second time I had a botox injection was into my sphincter muscles, with the hope they would be more open and less active. That completely failed, and again I was left unable to pee at all. And again I was catheterized for another 3 months. I refused any more attempts with botox, and pursued surgery (which subsequently worked to blow away my sphincter muscles and let me dribble pee all the time). Don't let my story dissuade you though, I have heard of others with success stories when trying botox. Quote Link to comment Share on other sites More sharing options...
sjaeger172004 Posted December 26, 2023 Author Share Posted December 26, 2023 6 hours ago, Slomo said: I've had it done, twice. My issue was severe urge incontinence with a neurogenic dyssynergia sphincter. Basically, I'd get a painful urge to go, but when I tried to relax my sphincter to go it would clamp down shut instead. I had to strain and push to pee, which was causing other problems too. I first had the botox injected into my bladder wall lining to try and calm the urges. It did work, except the botox also deadened my sphincter muscles, in their default clamped down mode, which made it even more difficult for me to pee. I ended up with an indwelling catheter for 3 months while it wore off. The second time I had a botox injection was into my sphincter muscles, with the hope they would be more open and less active. That completely failed, and again I was left unable to pee at all. And again I was catheterized for another 3 months. I refused any more attempts with botox, and pursued surgery (which subsequently worked to blow away my sphincter muscles and let me dribble pee all the time). Don't let my story dissuade you though, I have heard of others with success stories when trying botox. This is what I am fearing re Botox my urologist I think is extremely arrogant and says no chances of that. but I am prepared if that happens well I will ask for surgery you had as I am sick physically and mentally of my issues Quote Link to comment Share on other sites More sharing options...
Slomo Posted December 26, 2023 Share Posted December 26, 2023 21 minutes ago, sjaeger172004 said: This is what I am fearing re Botox my urologist I think is extremely arrogant and says no chances of that. but I am prepared if that happens well I will ask for surgery you had as I am sick physically and mentally of my issues Good luck on that. Not a single urologist was willing to listen to what I had wanted. Not until I had exhausted every possible alternative under the sun- and then some. And even then it took me over 15 years and a dozen urologists before I found one that finally would listen. One that was willing to entertain making me urinary functionally incontinent instead of urge incontinent with a painful blockage. I do believe what tipped the scale in my favor was stressing the surgery would bring an improvement in my quality of life. AND that the surgery would not make me irreversibly incontinent, since I already was (albeit of a different type of worse incontinence). Still, it took a whopping FIFTEEN sphincterotomy surgeries to get me there. Well, more like a dozen plus removing my prostrate, and an inch of my urethra (both due to a subsequent stricture blockage). Quote Link to comment Share on other sites More sharing options...
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