Long-Term Retention and Distention

Did you have a urodynamic test? I'm in a similar situation. Don't know how long I had retention but my bladder was stretched pretty good able to hold 1.6 liters but I didn't know that was happening b/c I was urinating normal from my point of view, but my prostate was enlarging too much so that I could not void efficiently. I got catheterized 6 weeks ago, failed 2 voiding trials since then, had a urodynamics test showing 33 to 40 bladder strength which is OK but not great. My Dr. will likely suggest HOLEP but I'm hoping to try PAE first. Are you considering any surgeries? What caused your retention, was it BPH?

@map63
Thanks for the post! I had a bout with stones one that was blocking urethra operations seem to take care of issues 3 years ago. As you I thought I was voiding well but as of two weeks ago I found out from ultrasound I had retention and another large stone in the kidney. No blockage determined from prostate exam and CT scan no Urodynamic as my Dr said it was no point based on the time of retention. I am now doing self Cath. I’m seeking second opinion but most research I have uncovered offer very few options for this non functioning condition. Unlike my case blockage from enlarged prostate once addressed could offer the hope of restoring a functioning bladder. In this age of robotics and AI it’s disappointing that more advancement has been made in this field. Best of luck

Well, a Urodynamics test takes any guessing out of the picture, no disrespect to your Dr. but I would want to see a definitive test result.

If catheterization is the way your bladder empties from here on out (and I have thought about this) I would consider trading off with indwelling catheter with a valve (no bag) when you have a few weeks where self catheterization was not needed (~4 times a day). I imagine, however, that it would become second nature to self cath but I'd like to not have to think about it for a few weeks having a valve cath.

I pray that you will for the internal fortitude to move thru this issue and not let it rule your mind as I can imagine it is a big life change.

@map63
This is definitely all new and a life changer. I am very active and this has set me on my heels. I am not sure if something else is going on but I have certainly not been feeling myself. I am in the process of trying to get further evaluation and a second opinion but the health care system is really frustrating. I don’t have a lot of experience as I thought I was fairly healthy. We always tried to stay out of the system eating right and exercising. We are looking at one of the teaching institutions here in state or possibly Mayo. Not sure about the valve you mentioned. My Dr has given three options Bag - self or super below the belly button witch sound closest to the valve you mentioned but would not be something you go back and forth with self.
Thanks for the encouragement. I am navigating- up and down only weeks in! The hardest part to process is the risk of infection- UTI and more complications especially outside the home. I am also trying to forget about dying and putting all my thoughts and energy into living!
Best of luck to you!

The valve catheter is the same as a bag catheter with the exception that you're not wearing a bag, the outlet hose is connect to a valve that easily curls up under your underwear. You empty as needed by simply pointing the valve towards toilet and manually opening the valve, after it's completed the draining you shut it and on you go.

Before, I was simply suggesting giving yourself breaks from self catheterization for a few weeks and have an indwelling catheter placed, particularly with a valve which helps normalize relieving yourself, I've been doing this for about 4 weeks and it's a big upgrade from a bag attached to my leg and self cath I can't wrap my ahead around yet at this time.

And yes..."get busy living"!

I have the same problem. Very painful. I also have I.C. syndrome. I pee every 15 to 20 minutes. Then I can't go for avery long time! I have a bladder sling. Im going to ask the Doctor if this could be the problem. I have had other people tell me this was what was wrong with them, and they had all or part of the sling removed and felt much better.

I’m not sure what a bladder sling is?
Or IC syndrome? Sorry about your condition. Good luck with a speedy recovery. ❤️‍🩹