Kirsten, 32, was a healthy, active woman who regularly went to the gym and worked full-time for a mail-order company when suddenly she became completely unable to urinate and her life was turned upside down.
Kirsten, from Perth, Scotland, lives with Fowler’s Syndrome, a type of urinary retention that is caused by the urethral sphincter’s failure to relax to allow urine to be passed normally.
The syndrome mainly affects people in their 20s to 30s, and can cause back pain, pain over the bladder and discomfort and burning while passing urine.
Kirsten, who is studying for a degree in Social Science and Politics, was diagnosed with the syndrome in 2014 – three years after she started experiencing the symptoms.
She had had a minor surgery to remove an ovarian cyst in 2011, and went into complete urinary retention following the operation. She was given a catheter for a few days and the issue seemingly resolved itself. But the next three years were hell. Kirsten started to experience frequent UTIs, including one that reached her kidney and put her in hospital for four days on IV antibiotics.
She visited her GP multiple times but was told ‘it was just one of those things’ and that she was ‘just unlucky’.
Kirsten tells Metro.co.uk: ‘It was immensely frustrating being back and forth with absolutely no answers, no tests, nothing. It did make me feel like I was going crazy and I can’t help but think that if it had been diagnosed earlier things might not have ended up so out of control the way they did.’
After three years battling excruciating pain, Kirsten was finally diagnosed with Fowler’s Syndrome when she was admitted to hospital unable to urinate at all.
She was in her local hospital for four nights, before being transferred to another hospital 30 miles away with a urology department.
She was given the diagnoses in the first hospital after speaking to a consultant urologist on the phone – but when she tried to ask questions about the disorder, she was told to ‘just Google it’.
Kirsten said: ‘I did [Google it] and it was terrifying, all rare disease sites and stuff like that, so it was a really stressful 24 hours until I was moved and able to speak to the urologist myself. I then spent eight nights in that hospital.’
During her hospital stay, Kirsten was taught to self-catheterise, to allow her to empty her bladder.
She continued: ‘The self-catheterisation was necessary because although (after a few days with a catheter in place) I regained the ability to urinate naturally, I was not fully emptying my bladder. This meant that “stale” urine was collecting in my bladder and causing infections.
‘By self-catheterising several times a day the idea was that my bladder would be fully emptied and this would prevent the infections. Unfortunately, one of the classic problems with Fowler’s is that it causes extreme pain in the urethra and makes urethral catheterisation of any sort excruciating, so I only managed to do this for a few months before it just got too much being in agony with it all of the time.
‘I lost my job during this time as I was constantly off sick due to being in so much pain and still getting infections.’
Unable to continue with the urethral catheterisation, Kirsten went on to have a suprapubic catheter (SPC), which is a catheter that is inserted straight into the bladder through the abdomen. But her issues continued.
‘It was difficult to accept as I permanently had a tube hanging out of me and it was often necessary to have it connected to a bag secured on my leg,’ she said.
‘This had a hugely negative effect on my self-esteem. It was also extremely painful to the point that I was on morphine every single day just to function.
‘The catheter kept falling out and because the tract closes within minutes when this happens, by the time I got to hospital every time it meant going back into theatre for a general anaesthetic to have another one placed.
‘In theory an SPC should be replaced every 8-10 weeks but in the 18 months I had one for I never made it to a scheduled change, they always expelled and had to be done as an emergency, resulting in around 20 general anaesthetics.
‘During all of this time I was still getting a lot of infections too and had absolutely no quality of life.’
Kirsten was in so much agony that she resorted to use a wheelchair because she was in too much pain to walk.
She tells us: ‘I was pretty much housebound as I was in agony, couldn’t walk far at all because of the pain, needed a wheelchair to get around, which I wasn’t strong enough to wheel myself so was reliant on having someone else with me.
‘My mental health completely bombed, I was actively suicidal and did make two attempts on my life during this time.
‘While my partner was supportive it did put a lot of strain on our relationship, although we got engaged I was never well enough for us to plan our wedding.
‘I ended up needing home carers as I couldn’t even shower myself or do day to day tasks like cooking and cleaning, it was humiliating needing that much help at such a young age.
‘The physical immobility and medications meant I piled on over four stones in weight. As someone who has battled with anorexia since the age of 13, this was incredibly traumatic.’
In 2016, Kirsten was finally referred to a specialist who told her it was ‘impossible’ for her to go on the way she was. It was decided that Kirsten would be given a urostomy – a surgical procedure that creates a stoma for the urinary system. It allows the bladder to be drained without the need for self-catheterisation.
Kirsten says: ‘I was scared because it’s a huge operation but I was mostly relieved that I wouldn’t be in and out of hospital every few weeks and in constant pain. The urostomy means that my kidneys are connected to a stoma that sits on the surface of my tummy and my urine drains constantly into a bag.
‘It was a lot to get my head around having the permanent bag and the scars, I found it really difficult at first, but to be honest now I forget it’s even there as I’m so used to it!
‘I did develop sepsis in the hospital. I’d been in for two-and-a-half weeks following my urostomy and was actually due to go home within a couple of days but I developed a really severe pain at the top of my buttocks where I’d been lying on my back for vast periods of time.
‘I became very unwell with a temperature of 40.2 and incredibly low blood pressure, a CT scan revealed an 11cm deep abscess called a pilonidal sinus in the cleft of my buttocks. I was delirious and refused further surgery, so my dad ended up having to sign the consent forms for them to be able to take me to theatre to drain the abscess otherwise I would have died, which was pretty traumatic.
‘I still get severe nerve pain in the scar from that operation.’
Despite the traumatic experience following the surgery, Kirsten says her life is ‘definitely better’ with a urostomy. She was able to start working again in 2018 after a long recovery, and no longer uses a wheelchair. She was even able to return to the gym and run frequently. She split from her partner and started living alone for the first time in her life. She felt free and like she’d got her life back.
But Kirsten’s health issues haven’t come to a complete halt – and over the past year she has dealt with recurrent kidney infections, including one last December, which turned into sepsis.
She went into septic shock and became very close to death.
She recalls: ‘My life was only saved because an incredibly skilled rapid response paramedic spotted the signs and got me blue lighted into hospital for urgent treatment.
‘I’ve been in and out of hospital again and have had to give up work once more. Recent scans have uncovered a blockage in the ureter leading out of my left kidney, the kidney is as a result very swollen and this is really painful. I’m waiting for surgery to insert a stent to fix this and hopefully once that’s done I can get back on track again.’
Despite the current complications, the urostomy hasn’t ‘massively impacted’ Kirsten’s confidence. She still wears what she wants and has a very active sex life with her new boyfriend – who she says isn’t bothered by her ostomy in the slightest, despite Kirsten finding the prospect of dating ‘daunting’.
‘The bag can be a bit irritating during sex, as it’s plastic so kind of crinkles and rustles in certain positions – but we work around it’, she says.
Kirsten says her experiences dramatically affected her mental health, so much so that she is now scared of hospitals.
‘Mental health wise it’s hard,’ she says. ‘I’m now scared of hospitals and terrified of operations because I’ve been through so much pain and trauma.
‘I find it difficult to trust doctors having been fobbed off and misunderstood for so long and I have PTSD from the sepsis.
‘I’m lucky that I’ve got a lot of family support but it’s really not easy.’
Though she is thankful she received a diagnosis, she is angry that it took so long to get it. While it’s a rare condition, she says her symptoms were ‘absolutely textbook’, and had it been picked up earlier than things might have been different.
She explains: ‘It completely turned my life upside down for a long time and I feel really passionately that GPs and hospital doctors need to be more aware of the condition.
‘There also needs to be better resources for patients who are diagnosed, I actually ran a blog throughout the worst of my own illness which is still online as I felt people needed something real to be able to read and relate to.
‘I’ve made some amazing, life-long friendships through online support groups on Facebook for people with Fowler’s and other urology issues.’
Need support? Contact the Samaritans
For emotional support you can call the Samaritans 24-hour helpline on 116 123, email [email protected], visit a Samaritans branch in person or go to the Samaritans website.
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