Health · women

Chronic UTIs and the scandal of poor testing

I’ve been a bit quiet over the last month or so on here because I’ve been suffering for the last three months with urinary tract symptoms that simply won’t go away.

It’s become debilitating and wearing being in constant pain, and not being able to treat it properly, and has led me to discover how poorly women and some men are being let down by a urine testing system that is not fit for purpose.

I’ve had UTIs before that have resolved with antibiotics, and even had a serious kidney infection a couple of years ago that left me in hospital, but which did not seem to have caused any visible damage.

At the end of April, I started with what I thought was another UTI and as it was at the height of lockdown and doctors’ were avoiding seeing people, I spoke to the surgery and agreed to take some Amoxicillin I had left over from my hospital stay. It was only 3 or so days worth though so when this didn’t work, I got a prescription for Trimethoprim for 7 days. At this point, I hadn’t been able to take in a urine sample, so we were just guessing.

Then when that didn’t work, I assumed the antibiotics had given me a yeast infection as they often do and that this was what was causing the pain. But after various pessaries and rounds of fluconazole didn’t sort it out, I started to think it must be a more stubborn infection. A trip to A&E last week and another 7-day course of antibiotics and I’m still in constant pain. I’m now on co-codamol and overactive bladder medication whilst I wait for a urology appointment.

But all my urine samples are coming back ‘normal’ despite blood being found on dipstick testing.

It was then that I discovered that the parameters used for urine testing on the NHS are a nonsense. They are based on a narrow study from the 1950s on severe kidney infections in 74 women, and a second back up study on pregnant women.

Severe kidney infections are not lower urinary tract infections. Neither do pregnant women present the same as those who are not pregnant, or who are menopausal, or who are men.

But it somehow became the ‘gold standard’ of urine testing for everybody, with a bacteria count cut-off that is too high, meaning many samples get rejected from even being cultured (like mine) and those that do still get infection missed because the culturing process is based on the idea – since proved wrong – that both urine and the bladder are sterile, leading to samples being dismissed as contaminated.

Many people are either not being treated at all, being treated too late, given the wrong antibiotics or too short a course. Ironically this is then causing antibiotic resistance and embedded infections (where a biofilm develops on the bladder wall) to proliferate, with a need for longer term antibiotics at a time when we all want to reduce the need for them.

Urinary tract infections count for 1-3% of all visits to the GP in the UK so it’s a scandal that the testing process is so inaccurate. Dipsticks detect only 40% of chronic infections and the MSU culture misses 90%.

So you get stuck in a loop. Just another thing to add to the list of health issues that women are being failed on, just weeks after a patient safety review has revealed the scandals of vaginal mesh, the hormone pregnancy test Primodos and the epilepsy drug sodium valproate.

The lack of understanding of women’s physiology in the 21st century is baffling. As the saying goes, we are not just ‘men with boobs and tubes’. Something needs to change and fast.

Bladder Action UK, the Chronic Urinary Tract Infection Campaign and Bladder Health UK all have useful details of support and further information for those who may be suffering.

And for more on the data gap in relation to women and medical research, Invisible Women by Caroline Criado-Perez is an eye-opener.

Do also sign the petition calling for an urgent overhaul of the outdated urine testing system.

Image from Pixabay

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