My Catheter Journey

I had numerous questions about my experiences with each catheter I have so far used, so thought today I would share my catheter story: what led me to needing to catheterise in the first place and how I went from ISC to indwelling to SPC.

Why did I need to start catheterising?

I have had a history of ‘bladder episodes’ of recurrent infections/pain/not being able to pee, but mostly had a normal bladder for most of my life. I became acutely unwell in 2017 with what we later found out was Lupus and this was also the start of my issues. My bladder had a chronic infection for months and remained in a high pain state after. We think Lupus caused my body to attack itself creating inflammation everywhere including my bladder which was already prone to bladder issues due to EDS. We also know the more unwell/run down/fatigued I am, the less my bladder works.

I was initially put on the 'bladder pain pathway' working my way through every medication available on the NHS (none of these made any difference). Following this I started my first round of instillations called 'Parsons Cocktail' (which was agony - turns out I am allergic to the ingredients). Then moved on to cystistat instillations which I still have no as it helps calm the bladder lining. I had numerous tests including several cystoscopy’s, biopsys and urodynamic studies. My bladder wall is three times as thick as it should be due to inflammation, and there are some areas of scarring from chronic inflammation/infections. After every test I went into retention which was a big clue what was going on and urodynamics then confirmed I am unable to fully empty my bladder.

Following this it was decided I needed to start self-catheterising to manage my retention issues. At this point I was fairly used to catheters as I had had them after procedures and with weekly instillations (which didn’t help). Still the idea of having to self-catheterise was terrifying. I remember watching a video online and when I got to the bit where they put it in it made me feel sick just thinking about it. Although my anatomy makes me ‘easy’ to catheterise, nurses would say I had a tiny urethra which we now know isn’t due to the size – I have a normal size urethra, it just spasms so much it clamps down preventing a catheter going in or out at times.

I don’t want to put some people off as some people really suit self-catheterizing and yes have discomfort, but find it manageable. I want to be honest, and that for me ISC-ing was really painful. This was due to the issue above in that my urethral sphincter spasms so much. However, I kept trying and managed to self-catheterise for almost a year. I had botox a few times in my pelvic floor and base of my bladder which did make my it easier to self catheterise. However it was a lot to go though for only a short term effect as it wore off after about 2 months.

What made me go from ISC to indwelling urethral catheter?

When I started ISC-ing I was doing it 2-3 times per day so it was manageable. I would try to fully empty in the morning and evening, with an extra one at lunchtime if I felt I needed too. When I was able to fully empty my bladder my bladder pain was 75% better! However, my urethra was not happy and I went to bed with ice packs every night often in tears. The main issue for me is that it was rare I was able to fully empty as again due to the spasms it would clamp off the catheter – stopping mid-stream like someone had turned the tap off leaving me still feeling ‘full’ and desperate for the loo. My retention kept getting worse as my bladder function was deteriorating so much that I had to up the amount of times I ISC-ed. I was only able to naturally urinate about 10-50mls and through a catheter 150-300ml (on a good day) and I normally have to pee loaaads as I drink so much. I ended up needing to self-cath 6-7 times a day. I wasn’t able to empty enough due to pain in my urethra from repeatedly catheterising it became agony, and then of course the cycle of infections started again due to the urine sitting in my bladder.