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.
Looking back I honestly wished I admitted defeat earlier than I did. I let it get so bad I ended up in hospital with 1500ml in my bladder and they had to put a urethral catheter in – named Penis. I think Doctors emphasise so much that self-catheterising is much better for your body than any sort of indwelling catheter due to the infection risk of constantly having a foreign tube in your body. However, in my circumstances, the only time I got an infection was when I am in retention otherwise even with catheters I stay infection free (touch wood!). It was also the knock-on effect of ISC-ing for me, I couldn’t leave the house as due to my spasms I had to do it in a half lying/sitting position not standing. I had broken sleep, spending hours in the bathroom trying to calm the spasms enough to self-cath. Then the infections obviously make me so unwell, setting of a lupus flare. By the time I had Penis I was so relieved, it literally gave me my life back.
Why did I leave it so long before getting an SPC (supra pubic catheter)?
Someone messaged me this and it made me really reflect why, I think it was because for 6 months my Penis was great. I was scared of moving onto a SPC as although this is reversible, it felt much more permeant. My urology team wrote it in the plan in January that I would have an SPC but they didn’t set a date and I didn’t want it, so didn’t push for it.
Overall, I got on pretty well with a urethral catheter considering my issue mostly is with my urethra. I had pretty horrific bladder spasms and couldn’t walk far without triggering them. But I felt my quality of life was better vs ISC-ing, I was no longer stabbing myself multiple times a day and constantly calculating how many ML’s I was emptying. I had an amazing infection-free streak until my urethra gave up completely. It decided not to let much pee out of the catheter at all. I had used a valve most of the time but whereas it used to be strong flow it just became this pathetic dribble, dripping like a broken tap no matter how full my bladder was. I had to move to the bag life so it could free-drain when it would let urine out, but still resulted me being back in that retention-infection cycle. 2 months of this before I finally got a surgery date..and welcome Wizz my new supra pubic!
Wizz and the future..?
I can’t say much about Wizz yet, we have still only spent 6 weeks together but so far so good. My wound is looking great and we are back using the valve 90% of the time, with a night bag at night. I am awaiting another test (was meant to be in January) to hopefully understand more about my urethra (called a UPP test) and my team still want to go ahead with plans for a sacral nerve modulation. At this stage, the SNM feels like a lot of intervention and I just don’t think more surgery is the answer. I want to see how Wizz goes for a bit and decide what’s best for me and for my future. My general vibe for my EDS body is “least intervention” possible hence why I stuck at each catheter stage for so long each time, looking back I wish I said I couldn’t cope both times much sooner than I did. But then equally I am happy I gave every option a try as I have no regrets that now Wizz is the best thing for me right now!
Lots of love,
Zoe xx
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