Bladder Issues- Oh What To Do?

[jenglynn]

Starting in Nov. I noticed I was having some issues with my bladder. I'd drink,drink,drink... But had lots of retention. Well, all of a sudden in Dec- I had my first case of full incontinence. Completely wet myself but didn't even realize it was happening. That happened twice in a day and that's when my doctor who manages my POTS sent me to Mayo on an emergency admission and stayed inpatient there 2 weeks. I had a few more episodes of full loss of bladder control, or some leaking, but really the main problem has been retention. I have always suspected I have a large or stretched out bladder from this because I'm just one of those people that doesn't have to pee a lot... Maybe 2-3x a day- that would be a lot. I'd feel the urge to go, then go, then on with my life. Long, long history of bladder infections from age 3+

Now, the retention has gotten to where I CAN'T go. I feel the urge to go, it's very uncomfortable because I just can't. I will sit there forever, run water, picture waterfalls, everything. So now I'm down to going once or twice a day if I'm lucky- or some says once or not at all. I drink a LOT of fluid.. And I'm losing weight and not swelling, where it is going is a mystery. I saw a urologist last week and he said that there is nothing that can be done because the autonomic system rules the bladder- if my autonomic neuropathy or whatever I have is acting up- they can't fix it and just recommends I start using a catheter on myself 4-5x a day to make sure I'm fully emptying my bladder. I'm just not thrilled with this option, I've never had a catheter put professionally when I didn't end up with an infection. I can't imagine if I was doing it myself. The doctor told me I'd likely have lots of infections but they'd put me on preventive antibiotics. Another option I'm not thrilled with. It's all so frustrating. I also have an autoimmune disease and due to my super aggressive antibodies, my body does not have the ability anymore to produce a fever. I have a very hard time fighting off infections. So it's not an easy answer for me. Even the Urologist said "I don't know what I would do in your shoes. We have no good options for you." Thanks.

I'm having another fun bladder dynamic study to see if anything is changed but I'm pretty sure that all is the same. Does anyone else on our forum have to catheter themselves to pee? I'm very nervous about the process but I know I have to get rid of the urine somehow- I just thought they could give me a pill that would magically make me pee Guess it doesn't work that way... Any advice or opinions?

Thanks!!!!! Jen