Slomo Posted June 6 Share Posted June 6 (edited) Ok, so here's what I have going on. I have severe urge incontinence, meaning whenever my bladder starts filling up I'll get severe pain out of nowhere, that I need to pee asap. But due to a Detrusor Sphincter Dysynergia, whenever I tried relaxing to pee my sphincters would clamp down instead. So about 10 years ago I underwent a series of sphincterotomy surgeries to fully open up both my external and internal sphincters. That lead to strictures, which ultimately led to a radical prostatectomy and removal of an inch of my urethra. Ever since then I've been functionally urinary incontinent. Since my bladder doesn't fill up I don't get those urges. Except whenever I sit on a flat surface or lie on my side, that seems to clamp off my urethra and allow my bladder to start filling again. Eventually I'll then get another severe urge, which often wakes me up at night. A simple shifting or deep breath is often enough pressure to get me peeing again, but the pain and broken sleep has already disrupted me. So, do you think I should do anything to try and resolve my problem more? And if so, what? Or am I chasing after more than I should expect, and be happy I'm at least stable and able to pee at all. FYI, I've already just seen my urologist about this, and we're starting off with a series of tests to see exactly where my baseline is at right now. The actual course of action will be discussed after that, but I'm wondering what options I may have before hand. Edited June 6 by Slomo Spelling Quote Link to comment Share on other sites More sharing options...
Slomo Posted June 6 Author Share Posted June 6 I should also say I know a bladder diversion with a stoma (new pee hole in my abdomen) is one option. I'm actually quite happy using diapers though, and I finally get Megamax diapers free from the VA. Also, I really don't want to have to mess with catheters ever again. So for me, that option is already out. I've also looked into urethral stents. Current mesh nitol (nickle-titanium) stents cause encrustatuon and promote strictures. They can't be used for more than 1-2 years before they have to be surgically removed. There is a new generation of closed-cell biocompatible stents being tested. They "might" be another option, but my current urologist doesn't use stents due to their previous limitations. So it looks like that may not be an option either. Bladder botox is also out. I've tried it before, and the botox only makes things worse for me. The body will also adapt a resistance to botox over time. So at best it's a temporary "bandaid" anyways. Meaning botox is also not solution. Just spit balling on this one, but is it possible to sever the nerves to the bladder while otherwise leaving it intact? That wouldn't exactly solve the problem of it starting to fill up every now and again, but I already start leak again whenever any pressure is applied. It might completely remove the painful urges though. So maybe it's an option? I'm not sure. What other options am I missing? Quote Link to comment Share on other sites More sharing options...
Incont Posted June 6 Share Posted June 6 Yikes, you've gone through a lot! I don't really have any advice but wanted to give you a virtual hug and a "hang in there." I hope you find a solution that works for you! Quote Link to comment Share on other sites More sharing options...
Slomo Posted June 7 Author Share Posted June 7 8 hours ago, Incont said: Yikes, you've gone through a lot! I don't really have any advice but wanted to give you a virtual hug and a "hang in there." I hope you find a solution that works for you! Thanks. Mind if I DM you about a separate question regarding DD? Quote Link to comment Share on other sites More sharing options...
Incont Posted June 7 Share Posted June 7 1 hour ago, Slomo said: Thanks. Mind if I DM you about a separate question regarding DD? Sure Quote Link to comment Share on other sites More sharing options...
Slomo Posted June 18 Author Share Posted June 18 I saw my urologist again. My urodynamics test concluded that I am retaining urine, but oddly so. I sometimes leak a little at times, but mostly retained. And there is no feeling or activity in my bladder, plus I reached 500+ ml before getting an urge. And once I pushed just a little, that got the pee flowing until nothing remained in my bladder. My cystoscopy showed there are no obstructions in my urethra. And they put some water in my bladder to visually confirm it does not activate or contract. I also didn't leak any of the water when they removed the scope. Only after standing and coughing did my bladder fully empty. We talked possible options again. I said my biggest concern is my bladder filling and me getting painful urges, as well as the interrupted sleep. I also confirmed I do not want a diversion with stoma, and that I would prefer to just empty my bladder automatically. My urologist said she isn't sure what can even be done. The urodynamics confirmed at least a partial obstruction, but the cystoscopy confirmed no obstructions. Stents are still not an option as the existing ones on the market are no good for long-term use, and any possible new ones are still under clinical trials. She has an internal conference meeting next week where they discuss "difficult" patients like me. I said it was ok for her to talk about my case, and get possible feedback from other urologists. So all I can do is hope something will come of it. But I'm also going to seek a second opinion from my VA urologist next week. So we'll see..... 1 Quote Link to comment Share on other sites More sharing options...
Recommended Posts
Join the conversation
You can post now and register later. If you have an account, sign in now to post with your account.