Tears were rolling down my face as I complained to the GP over the phone in March 2020, after finishing another three-day course of antibiotics. “No. It’s still there,” I explained, frustrated.
Lockdown restrictions meant I was unable to head to my local surgery in North Lanarkshire and instead, I was listening to the same misdiagnosis I’d heard countless times over a telephone appointment.
I don’t remember a time when peeing didn’t cause acid-burning type pain, as my first memory of a urinary tract infection (UTI) was aged just eight in 2005.
It became recurring at 15, when my doctor misdiagnosed thrush and it took three weeks to “clear”. Then it kept returning – triggered by things like bubble baths, spicy food, certain underwear and swimming.
At first it returned every few months, then it became monthly, then every two weeks. I didn’t want to go out, I felt different from the other girls.
“Drink cranberry juice, wipe from front to back and stay hydrated,” was just some of the advice I was given in childhood.
But little did I know, this was going to be my life for the next decade – and it was the same infection flaring and being misdiagnosed each time.
Spending my teenage years at the GP every few weeks became the norm. Ultrasounds, X-rays, CT scans, MRIs and a cystoscopy – you name it, I had it. But no urologist could ever find anything wrong with my bladder, despite the constant pain.
I was prescribed antibiotics on and off for nine years, but the UTI would always flare up again.
“Unfortunately, it’s part of your biological make-up,” the GP shrugged, while rudely reminding me of basic hygiene.
Fasting for days
My bladder is so sensitive to food, sometimes I’d fast for days due to fear of bladder pain. I tried major lifestyle changes and spent hundreds of pounds on natural supplements.
My bladder felt like a bowling ball, while my urethra felt on fire.
The urologists put me on prophylactic antibiotics for two years, which didn’t work. And as I got older, my issues severely impacted my life. I was at the doctors’ surgery every week. They eventually said they didn’t know how to help me and just asked which antibiotics I wanted. I also took nerve blockers, anti-inflammatories and opioids.
Standing for lengths of time – such as when showering or cooking – was tough. I’d often be bed-bound in pain. Walking any distance meant relying on mobility aids. Shopping or going to the cinema with friends made me anxious about toilet access. I’d have to take a portable toilet everywhere and I had a radar key so that I could unlock disabled toilets when I need immediate access.
I met my partner, Shaun, at a gig in 2019. On our first date I mentioned nothing about my health, but five days after we met I had my laparoscopy and was diagnosed with endometriosis and he sweetly delivered flowers.
He’s caring, kind and has supported me throughout, from financially helping with costs of appointments to filling up my hot-water bottle and getting ice packs. We have to consider my symptoms before any form of sexual activity, but he recognises me as more than my disabilities.
It was at the start of 2020, when I was 23, that my symptoms became chronic, 24/7 and relentless, after I woke up with a UTI and the symptoms never went. The antibiotics had stopped working, I couldn’t sleep or eat and had burns on my inner thighs from ice packs.
“How can I go on like this?” I cried to Shaun.
Urinating, painfully, up to 30 times a day was just one of the problems – along with chronic pelvic pain, lower back pain, incomplete emptying, blood in urine and retention. Despite being in agony, tests were coming back as negative for infection each time I went to the GP.
In September 2020, I went to A&E in the worst pain imaginable, peeing “glass” every 10 minutes. Yet again, I was told I didn’t have an infection and was sent home with anti-inflammatories.
Desperate, after hours searching online I found specialists in London. Because chronic UTI wasn’t an officially recognised condition on the NHS, in March 2021 I set up a GoFundMe page to raise £3,500 for private treatment at a chronic UTI clinic in London’s Harley Street.
A diagnosis at last
Finally, I was diagnosed with a chronic infection of my bladder. I felt relieved – it wasn’t in my head. The specialist explained my infection was “nasty, severe and raging” and had been deeply embedded for at least a decade.
My best option was to get fulguration surgery – an operation using heat from an electric current to destroy abnormal tissue, which is a common procedure, often used for cancer, but they don’t perform it in Scotland for chronic UTI.
So in December 2021, I paid £4,500, with help from my family, to fly to Turkey to have fulguration surgery on my bladder and remove the infected tissue. The surgeon found extensive pre-cancerous tissue damage in the trigone area of my bladder, and chronic inflammation that spread to the back of my bladder.
It’s been four months since my op and healing can take up to a year – I still don’t know if there is a total cure. I am still shedding pieces of scar tissue and changing pads regularly, so I have a long way to go.
The only benefit of the pandemic for me was that all my university work became home-based. So I watched lectures from bed, clutching a hot-water bottle, and managed to achieve a first class honours degree in applied psychology in 2021.
That is why I was devastated when an occupational health doctor told me that same year that I was not “fit enough” to pursue my career as a mental health nurse.
One night, on a whim, I decided I was fed up with being quiet about what I’d suffered.
I started campaigning for the government to lower the lab testing criteria for chronic UTIs and launched my Instagram account to raise awareness, because the condition wasn’t even recognised as a legitimate illness in medical literature, NICE guidelines or the NHS.
In March 2022, chronic UTIs became recognised by the NHS and there’s now hope for the future and fellow sufferers.
Through my Instagram page I’ve made friends with women with the same condition. It can be lonely and isolating, but they’ve been a huge comfort. It was through the chronic UTI community I found the specialists and was able to get diagnosed.
My plans all depend on my recovery from surgery. So far, things seem to be slowly but surely improving. I would love to do something with my degree that I worked really hard for. I volunteer for charities working with disabled people, which has helped give me purpose. If my health improves, I want to have more fun and do all the things I haven’t been able to – like holidays, gigs and sex!
Being pain free is probably impossible for me, but if I could get it managed to a level where I can live a good quality of life then I will be happy.
You can read more about Carrie's journey on her Instagram page.
