Cath and Friends: Life with an Indwelling Catheter

DISCLAIMER: This is my own PERSONAL opinion and experience

Photography: Millie Clinton

It’s known that in the world of unlucky cats, three drains and magpies that bad luck comes in three. And, I think I’ve surely reached the end of this cycle. Break up, redundancy and now a dysfunctional bladder. It has to be nearly over? I’ve pondered whether to write this because my OCD brain intrusively said ‘you’ve documented all your health problems and on all three occasions you were told you were slightly unhinged by three different neurologists’. Now, that thought has been challenged with three big differences, it’s not related to my ME, peripheral or requiring a neurologist, so heck let’s divulge into the nitty gritty.

When the clock struck midnight on January 1st I felt optimistic knowing I had done my grieving of a relationship and job. So, when I was struck with a UTI (Urinary Tract Infection) it was a new experience, having never experienced any problems in the lady department. I questioned whether it was an STI having come out of a relationship which was quashed very quickly following the urine sample and other tests. One thing, I don’t know how I managed to pass exams and get senior positions to not know women had two holes, and if it helps they are called the urethra and vagina. It’s a new one for me too. This urine sample wouldn’t be an isolated one either, by March I had, had three bouts of infection and multiple rounds of antibiotics. But, the infection itself was only half of it because during this time I was going days without urinating. But, my GP said “If it gets worse you must visit A&E.”¬† The GP referred me to have an ultrasound and an internal scan to confirm I wasn’t dealing with ovary related problems. I was asked to attend the appointment with a full bladder, around 300ml was sat in my bladder at the time of scanning the nurse said, ‘I have identified debris in your bladder’ and me being awkward said ‘I am single, but I didn’t know my lady parts could get dusty’. Shortly after that, she asked me to try and empty the 300ml from my bladder but I couldn’t budge it for love nor money. I sat on a NHS toilet hissing, playing waterfalls and deep breathing with little fluid wanting to leave my bladder – the nurse said we’ll do your internal scan which should budge the urine out…it didn’t. With the inability to empty my bladder and debris the nurse said she would recommend an urgent referral to urologist as soon as possible. My scan was at the start of March and I was referred at the end of March….

By the time April was in motion, I was experiencing days where I was drinking litres without any urinary urges and persistent¬† back pain. But, then I came down with a temperature and the sickness/nausea/headache 24 hour bug with no desire to urinate. I with my family were convinced it was a 24 hour bug and dismissed the obvious, urinary retention. But, then the dull ache in my lower back resurrected like Jesus on Easter – it had to be another UTI? On arrival, my GP had no real concerns but thought it was acceptable to bring up that she considered me overweight despite never weighing me.¬† I love the NHS app because you can find out all the notes the medical folk write about you. She said, the ‘if it gets worse’ because on an initial urine dipstick there wasn’t an infection so she sent the sample to the lab for testing. This was done on the Thursday and I never did find out if I had an infection until recently when I was building out my urology timeline. By the Saturday, I was walking around looking 9 months pregnant unable to urinate with pain and discomfort. My last natural urination was 10th April 2024. I needed someone to give me some form of a solution. So, I visited the Pharmacy having remembered Rishi Sunak’s new scheme ‘shove it off to the pharmacists’ and to my surprise he did what my GP practice had failed to do since January. ‘You need to see A&E RIGHT NOW, you’re in retention which is incredibly dangerous’. Off I went to A&E on what would become one of many A&E visits this year.

Readers will know that I have never held neurologists and pain clinics in high regard but urology and acute emergency nurses/doctors I have been stunned with their compassion, empathy and knowledge. On arrival, I had an ultra sound which revealed the problem, my bladder had stored 900ml, almost four times the amount of a normal female bladder should hold. The urologist on call was stunned that I had been living a normal life with that much fluid trapped in my bladder – we’ve worked out recently that my bladder has been retaining too much urine since January. I’ve hit PB’s in the gym, secured business, lost weight, gone viral three times on TikTok and seen my ex move on. How have I lived normally during what is a very unusual symptom? A high pain threshold was what the urologist said. I wasn’t aware until recently that women are less likely to experience urinary retention than men, this will form another article, so stay tuned. The urologist admitted me and I spent a night on a ward having been catheterised that same night. I didn’t sleep the duration of my stay leaving me feeling like I had done a 12 hour flight across multiple time zones. The NHS must stop describing procedures with this line ‘you may experience some discomfort’ because it simply isn’t acceptable from the conversations I had with patients on my ward. I found the insertion of a catheter to be far less painful than my smear – I was numbed to the nines, so much so I thought I had wet myself. I was also encouraged to distract myself during the procedure, so the Junior Doctor who was completing his Urology rotation held my hand watching the Top Gear Bolivia Special – I’m sure that’s made his dissertation pop. I cant describe the relief I had when my catheter began working, I had 1 litre drained and by the time of discharge Cath had emptied 2 litres from my bladder. My catheter had to be kept in place for 10 days to allow my bladder to reduce in size and fully drain having had four months of retention.

The 10 days flew by and I naively went into my trial without catheter (TWOC) expecting to wet myself as my nurse removed the catheter. But, the urology administrator said ‘bring with you panty liners and a change of underwear’ so I went in guns blazing expecting to piddle again. It was a rather distressing experience to say the least. At these appointments you will have your catheter removed, once again the dark web will make you feel very anxious about a catheter removal but the reality is, the removal is far nicer than having one inserted after four hours of self catheterising poking. Once removed and you feel air in the lady area, you are asked to drink at least 2 litres within a 90 minute window with the goal of being able to naturally pass urine. In between that, you’re taught how to self catheter. For some, self catheterising is a game changer because you are in control of your bladder and it’s dysfunctional make up. But, in my case it caused more problems. We spent 2 hours contorted in a variety of positions from foot in a sink, over a toilet, laid down, in a bed, stood up and more latterly squatting, the pain I experienced from 2 litres trapped inside of me while learning this made for pretty grim viewing. I was then fitted with a new catheter which was far more discrete than the one the A&E team had fitted weeks earlier. I’ve experienced a TWOC twice and I can say I don’t fancy reliving it. Myself and my catheter nurse was also struggling to locate my urethra which left her writing to my Urologist asked for this to be removed from my treatment plan.

At the time of my nurse reinserting the catheter, she asked if I had passed a bowel movement and I hadn’t been able to do that in three days by the time she asked the question. I was suddenly experiencing two natural bodily functions not functioning as they should have been. She urged me to take a laxative to relax the bowel, due to the urinary retention and constipation, I was left with incredibly painful abdominal swelling. My nurse scheduled another visit and on arrival my bowel movements had not moved in one week. She, like the pharmacy, encouraged me to see A&E immediately. This would make up two admissions, the first saw me have an X-Ray which revealed the extent of the constipation along with a CT scan which thankfully did not show obstructions or more concerning features. On both admissions, I had an enema administered which was the most degrading procedure I’ve ever had; I’ve always said there is nothing worse than getting caught short with IBS while out and about, enema induced bowel movements on an NHS Surgical Ward tops it now folks. I fainted and found the procedure very overwhelming. But, recently, I’ve learnt that constipation is unfortunately a common complication with catheters. If it helps, your catheter to the body is seen as a trauma so your bowel then decides to go on it’s guard locking your entire abdomen down. Think COVID-19 March 2020 lockdown.

I’ve found living with a catheter to bring good days and bad days; some where I can embrace and own the catheter life while other days I feel incredibly insecure ugly and like I’m failing. Failing to be able to do an everyday instinctive bodily action. I’m now awaiting further tests to rule out a neuropathic link but I’ve been advised that surgery will be one of the inevitable outcomes if I want to reach a place where I can urinate naturally. I wanted to write this post because it feels like the right time to divulge the nitty gritty of urological problems. But, come back next week where we will discuss the three things I have learnt from living with urinary retention.

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  • So very proud of you Beautiful Lady. I don’t know how you deal with all you’ve had thrust upon you but you do!!! Wonderfully so too.