My bladder function has declined rapidly over the last few months. I've been unable to empty it myself and even though self-catheterising I was only managing 100ml if I was lucky. This is because normally when you pee your sphincter in your urethra relaxes allowing it to flow freely. Mine likes to grip on for dear life and won't let a single drop out or if I self-catheterise it will clamp down on the catheter itself (you can read more about fowlers syndrome here).
I eventually admitted defeat that I was unable to manage when I had more liquid coming out from my tears trying to get pee out than the amount of pee itself! I was admitted into hospital and before I burst they put in a catheter and drained 1L initially and another 600ml over the next hour.
I am now adapting to life with a urethral catheter and accepting I will most likely have this now until my sacral nerve modulator trial in March. I'm mostly using a flip flow valve which is a new experience (literally like peeing with a penis), and then will use a night bag at night.
Here are some of the thoughts, highs and lows I have had during my first week with my new accessory:
I can peeeee! No tears required, no deep breaths, no psyching myself up, no more self catheterising, no more 4am sitting on the bathroom floor and no longer dreading going to the toilet!
Although my bladder feels way better as it’s no longer in chronic retention, my urethra feels way worse. Why can I only have one pain-free part at a time?
I always thought urethral catheters were just painful as I always had them put in due for post-op recovery. Turns out they are just as painful without surgery too.
Using a flip flow valve is great until I realise how hard it is to aim into the toilet. Pee EVERYWHERE. This must be like toilet training a 3yr old boy.
And following that...having your boyfriend try to teach you how to aim is a surreal experience & one I don’t recommend. Him reminding me to put the seat down was a new low.