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.
6. I went to the cinema & only had to empty my leg bag once! Amazing as I usually spend 50% of my time in the loo missing vital parts of the movie and need whispered versions to catch up.
7. Downside was that whilst sitting in the cinema, my catheter was so painful & spasm-ey until I shoved my ice cold drink between my legs. Classy.
8. Not only does my new long coat help me knees stay warm, it also hides leg bags. Until I undo it & wonder why people are staring at my right thigh & D is saying ‘put your penis away’,
9. One moment I’m so happy that all the stress of trying to empty my bladder is gone and the next I feel so disabled by the pain of it in my urethra so I just cry & feel hopeless.
10. Struggling to be patient with myself and my new accessory. It’s only been 6 days & I’m expecting too much for myself, it will take a while to adapt..& I'm sure that soon I won't have to clean my bathroom a million times a day as my aim improves.
Lets see how week 2 goes - its a busy one with 3 appointments including one in London. Do you have any tips for surviving life with a urethral catheter?
Lots of love,