I am an active 21 year old male, and for my entire life I have had chronic urinary incontinence. Almost every single night I wet the bed, and if I try to stay hydrated in the daytime and I don't have direct access to a washroom, I will pee myself.
Backstory:
I have always had severe overactive bladder: when I need to pee, it's incredibly high urgency. The pain takes over my entire body and I can't control it at all. When I feel the urge to pee I have about 10-15 minutes before I will leak myself. I have always wet the bed. My parents started taking me to canadian family doctors and specialists when I was 7, and every single time they told me I was fine and that I would grow out of it. I am now 21.
I started taking this seriously when I was 18 and I hadn't grown out of it at all. I consistently wet the bed and I would be dehydrated constantly because I don't want to wet myself at school or with my friends. My parents took me to specialists all over and we had the same "diagnosis" from all of them.
My bladder is average size, so they insisted I just have an overactive bladder. I took 2 urodynamic tests, and both results showed poor flow, with twinkles towards the end. I was prescribed fesoterodine and mirabegron, which were meant to relax my bladder. They worked slightly but were not a fix at all. My doctor made the suggestion that it could be a tethered spiral cord: so he ordered me a spine MRI. the results came back OK, and that was ruled out.
My doctor then suggested Botox for my bladder. I did the procedure thinking that it would be the fix: and my life has been hell ever since.
Ever since the botox, i experience intense, agonizing pain whenever I try to urinate. My frequency and urgency has stayed the exact same (incredibly high), but whenever I try to pee the pain is unbearable and I can barely empty my bladder.
I went back to the doctor and they told me that the botox "worked too well" and now I have to self catheterize whenever I want to pee, as they did the ultrasound and it showed that I can barely empty my bladder whenever I go to the washroom.
Now that I've grown up and done my own research, I truly believe that my issue isn't an overactive bladder at all. I think it's something else, maybe a pelvic floor issue, maybe neurological, something other than my bladder.
Whatever it is, i'm done living like this. I'm done being dehydrated every single day of my life for fear that I will wet myself. I'm done waking up every morning to a piss soaked bed. I feel like the system has failed me, telling me my entire life that I will grow out of it when I haven't, and now I live in extreme pain every day whenever I want to pee.
I plan on going to a true expert in the field, no matter how much money it takes. I was looking at Zurich hospitals, as well as Germany. I will use up all of my savings and more if it takes it, I just want to live a normal life.
I apologize for the rant. I guess my question here for anyone in the field, to your best knowledge, what is happening with me?