For more than six years Elizabeth* grappled daily with severe urethral burning, “absolute” pain and a constant, urgent need to go to the bathroom, which felt like someone was pressing on her stomach.
When the Brisbane woman first started experiencing the symptoms in late 2014 she believed it was a clear cut urinary tract infection (UTI), a common infection one in two women will experience in their lifetime.
But her UTI went undiagnosed despite repeated tests – leaving her “suffering” and in agony.
And according to experts this is not an isolated case.
Elizabeth now 31, claims the medical system failed her, explaining she went to a GP when her symptoms first started to get antibiotics.
“After completing a urine dip test, I was told there wasn’t any sign of an infection,” she told 9news.com.au.
“My GP did put me on a course of antibiotics but looking back I think it was too short because the symptoms briefly got better, but when I stopped, it came back.
“I went to several doctors because frankly I didn’t believe the test results. I even went to emergency a couple times. They were all telling me I didn’t have one.
“I had doctors that were like, ‘you sure you’re not imagining it’. They looked at me like I was crazy.”
Instead Elizabeth was slapped with the diagnosis of interstitial cystitis, a chronic condition also known as bladder pain syndrome.
There is no cure, instead pain symptoms have to be managed.
“I saw so many urologists, at least four at one point. They did all sorts of treatments.
“I had steroid injections in my bladder, botox injections in my bladder, urethral dilations, bladder instillations, a three-day ketamine infusion – heaps of different pain medications.
“At times they would make the symptoms worse.
“I’ve got photos from the inside of my bladder at one point and it was bleeding, you could see the blood was dripping down. Later a urologist said all four quadrants of the bladder were inflamed and there were pin-pricks of blood. You could physically see there was something going on.”
The pain was so constant Elizabeth stopped working, she stopped going to the gym and drives on bumpy roads were tear-inducing in their agony.
Her condition took a turn for the worse at the end of 2020.
“Things got really bad, to the point I had a fever, I was throwing up,” she said, explaining the pain was so intense she felt like she had been kicked in the kidney.
Elizabeth was rushed to hospital. In a crowded waiting room she was told her urine test had again come back clear.
Over a week her condition deteriorated, until her husband forced her back to the doctors.
“I nearly passed out in my GPs office,” she said.
“At emergency they said they thought I had a kidney infection and gave me a few days worth of antibiotics.
“I got a little bit better.”
The ordeal and constant pain was taking so much from Elizabeth that she couldn’t see a “way out”.
She said she was constantly ill as her body was worn down from fighting the UTI.
In tears one night, shortly after her two emergency visits, she began searching for support groups on social media.
“My husband was asleep, so I went downstairs. I was in so much pain I was crying,” she said.
“I just needed to speak to someone. I didn’t care where they were, I just needed someone who knew what I was going through.
“That’s how I came across a Facebook group for UTI sufferers. I began reading other peoples’ stories and I saw myself in them.”
Experts say Elizabeth’s case is not isolated
“Dip tests are very insensitive,” Deirdre Pinto, secretary of Chronic UTI Australia told 9news.com.au.
“And the midstream urinary cultures (MSU) miss up 50 – 80 per cent. A recent study from the UK also shows they can’t distinguish between a chronic UTI patient and normal asymptotic control patient.
“They’re pretty much completely useless.”
Pinto claims these “testing failures” are partly driving an increase in hospital admissions for UTIs, with patients facing increasingly “serious presentations”.
“It’s been a massive increase, even when you account for population growth,” Pinto said.
“Australian Institute of Health and Welfare data shows hospitals over 2017-18 recorded 28 per cent more episodes of UTIs than in 2007-08.”
But this only takes into account the patients with diagnosed UTIs, she pointed out.
“Over 2017 – 2018, hospitals also saw a 44 per cent increase in instances of unspecified cystitis – inflammation of the urinary bladder – when compared to 2007-08.”
Pinto said international researchers believe inefficient testing and short antibiotic courses can lead to a patient developing a chronic UTI, a condition not formally recognised in Australia.
“It starts to embed in the bladder wall, where it develops a biofilm to protect it.
“This means there’s relatively few bacteria floating around so tests are much less likely to pick them up.
“Patients can live with chronic UTI for decades and they’re in excruciating pain.”
Pinto said the testing needs to change for UTIs, followed by the treatment.
Dr Payam Nikpoor, a Melbourne-based urogynaecologist and pelvic reconstructive surgeon urges patients to seek a referral to a specialist should they be left grappling with re-occurring bladder pain.
“If at any point of time you feel like you’re not progressing, moving forward with a diagnosis, a referral to a specialist should be made,” he said.
The treatment that ‘saved my life’
After reading stories from other women online, Elizabeth found a urologist who prescribed her a long-term antibiotic dose.
That was in January 2021 and “within weeks” she “was a different person”.
“It saved my life,” Elizabeth said.
“I haven’t had any symptoms since then, and I haven’t had side-effects.”
Elizabeth has since finished an accounting degree and is now working full time.
She said she is extremely lucky she managed to find a doctor to prescribe her the long-term dose.
“It’s hard to find doctors, very hard, who support it,” Elizabeth said.
“Ideally I don’t want to be on antibiotics forever. I’m confident it will be a couple of years based on comments my urologist made.
“At the end of the day, I have my life back. I can work and I can go to the gym. I can work. I’m just a normal person.
“I wouldn’t trade that for anything.”
* Name changed to protect identity