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Urinary Retention - Bladder Contractility
I am a 32 yr. old female who was born with a neurogenic bladder. My drs. did a vaginal pull-through when I was an infant (I had no vaginal opening and my interior vagina was attached to my bladder wall), but there is no urethral obstruction. I think I also had "urogenital sinus", which I believe means the urethra and vagina opened into the same canal.
I have always had some degree of urinary retention since birth, but I spent my first 25 years able to void on my own (although with frequency issues) and never had kidney infections etc. Due to frequency issues, I met with a uro for the first time since infancy (about 7 years ago) and he had me start to self-cath, which I do every time I need to urinate now.
Since my self-cath program began I have lost the ability to urinate on my own (more than maybe 5ccs at a time). My uro and the urogynecologist I have met with have told me I most likely have bladder contractility issues and not nerve issues. I even had the trial for the InterStim with no results. My dr. says the only option for me to to continue to self-cath, but I refuse to believe this is the only answer since I went all of my life "on my own" (even though I was never fully emptying).
Are there any options out there for me? InterStim did not work, physical therapy has not worked, drugs have not worked. Is there an available aid to bladder contraction to "squeeze" my urine out? I have noticed if I press on my bladder and strain when I have to urinate I am still able to get that little bit of 5cc or so out, so I think it is a contraction of my bladder issue.
What about bladder transplant? Is there any hope that that may one day be an option in the medical field?
Out of ideas! Please help.
Thank you.
I have always had some degree of urinary retention since birth, but I spent my first 25 years able to void on my own (although with frequency issues) and never had kidney infections etc. Due to frequency issues, I met with a uro for the first time since infancy (about 7 years ago) and he had me start to self-cath, which I do every time I need to urinate now.
Since my self-cath program began I have lost the ability to urinate on my own (more than maybe 5ccs at a time). My uro and the urogynecologist I have met with have told me I most likely have bladder contractility issues and not nerve issues. I even had the trial for the InterStim with no results. My dr. says the only option for me to to continue to self-cath, but I refuse to believe this is the only answer since I went all of my life "on my own" (even though I was never fully emptying).
Are there any options out there for me? InterStim did not work, physical therapy has not worked, drugs have not worked. Is there an available aid to bladder contraction to "squeeze" my urine out? I have noticed if I press on my bladder and strain when I have to urinate I am still able to get that little bit of 5cc or so out, so I think it is a contraction of my bladder issue.
What about bladder transplant? Is there any hope that that may one day be an option in the medical field?
Out of ideas! Please help.
Thank you.
MEDICAL PROFESSIONAL
You have described all of the measures I would have taken to try to jump start your bladder. Interstim, Urecholine (Bethanecol - a bladder muscle stimulant), Flomax (a bladder outlet relaxant). You probably also underwent urodynamic testing, which showed that your detrusor (Bladder) muscle was not contracting when you tried to void. So, the problem sounds more like a noncontracting bladder to me also. I have not heard of functioning bladder transplants to date. However, there are some novel stem cell based therapies that are out there that may offer hope, in the future. As with most great visions, it starts with a single individual refusing to accept things as they are. You may well be that individual. Drop an email if you think I can be of further assistance.
Dr. Hoyte
Dr. Hoyte
Dr. Hoyte,
Thank you so much for your advice. Since my last post I have obtained more of my records and according to my urodynamics my bladder detrusor IS contracting properly. The current diagnosis is "detrusor sphincter dyssenergia".
My dr. now has me trying Doxazosin to see if that helps me to void on my own.
Are there any other therapies that you know of for DSD? I self-cath every time I have to go to the bathroom, otherwise I can't go, so even if I could reduce the number of times I have to self-cath, that would be ideal.
Thank you!
Thank you so much for your advice. Since my last post I have obtained more of my records and according to my urodynamics my bladder detrusor IS contracting properly. The current diagnosis is "detrusor sphincter dyssenergia".
My dr. now has me trying Doxazosin to see if that helps me to void on my own.
Are there any other therapies that you know of for DSD? I self-cath every time I have to go to the bathroom, otherwise I can't go, so even if I could reduce the number of times I have to self-cath, that would be ideal.
Thank you!
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