WHY INTERSTITIAL CYSTITIS COULD BE A MISSED UTI

The problem with UTI tests

WHY YOU SHOULD DITCH THE DIPSTICKS

And question your doctor’s UTI testing methods before accepting a diagnosis of “interstitial cystitis”.

Are you tired of feeling like your UTI symptoms are being brushed aside or misdiagnosed? If you've been through the frustrating cycle of endless tests and inconclusive results, you're not alone.

Picture this: you're sitting in your doctor's office, describing your discomfort, only to be told that your tests look "normal."

But here's the kicker — those tests might not be as reliable as you think… read on to find out why!

IF YOU’VE BEEN TOLD ALL YOUR TESTS LOOK “NORMAL”

HERE’S WHAT YOU NEED TO KNOW ABOUT UTI TESTING:

1.Dipsticks are NOT reliable:

Dipstick tests and urine cultures, the go-to methods for diagnosing UTIs, often fall short in accuracy. Shockingly, up to 50% of urine samples that test negative on dipstick actually show bacterial growth on culture. So, why are we still relying on these outdated methods that can overlook real infections?

2. Urine cultures are NOT a reliable UTI test either:

  • Bacteria can be missed in a culture if not sampled correctly.

  • Certain bacteria may not grow under culture conditions, leading to potential missed UTI diagnoses.

  • Urine cultures often report "mixed growth" instead of acknowledging multiple bacterial species in an infection.

3. Hydration levels matter:

  • Hydration levels significantly affect UTI test accuracy.

  • Diluted urine samples may result in missed bacterial growth on culture.

4. What if you’re one germ short of an infection?

Whether or not you test positive or negative for a UTI is based on how much bacteria is found in your urine. This is called the 'Bacterial Threshold,' and it follows a really outdated rule called the 'Kass Criteria.'

It means that if your urine has fewer than 100,000 bacteria per milliliter, it might not be considered a UTI, even if you're experiencing symptoms.

Imagine you have 99,999 bacteria in your urine, causing discomfort, but because it's just under the 100,000 mark, you might be told you don’t have a UTI. This approach overlooks cases where even lower levels of bacteria can still cause UTI symptoms.

In simpler terms, it's like being told you're not sick because you're one germ short of a certain number, which doesn't make sense. It's ridiculous, it's outdated, and it's leaving countless individuals undiagnosed or misdiagnosed with labels like interstitial cystitis, and suffering unnecessarily.

Can you see how by relying purely on dipstick and culture based urine tests there could be some inaccuracies? If your interstitial cystitis was diagnosed through a process of elimination then I would encourage you to consider PCR or NGS urinary testing, like the ones I discuss in this blog post. It may help you get the UTI answers your doctor can't.

Or, if you’re confused about whether you have IC, chronic UTI or embedded UTI, check out my other blog post here.

Urine test in a lab

WHAT IS THE KASS CRITERIA AND 100,000 THRESHOLD?

The Kass criteria established a threshold of 100,000 bacterial per millilitre of urine as a criterion for diagnosing urinary tract infections (UTIs) and is widely adopted in clinical practice to this day despite major flaws.

The Kass criteria is based on a study conducted in 1957 by Dr. Edward Kass. The study involved a small number of pregnant women with kidney infections, and the criteria derived from this study have been widely used to diagnose urinary tract infections (UTIs) ever since.

Kass himself felt this study was not appropriate to be used across lower urinary tract infections across populations but at the time it was one of the only pieces of data available and was adopted.

The Kass criteria established a threshold of 100,000 bacterial per millilitre of urine as a criterion for diagnosing urinary tract infections (UTIs). This threshold has been widely adopted in clinical practice for many years.

But here's the thing:

Bacteria don't always play by those rules. It means that if you've got 99,999 bacteria per ml of urine hanging out in your bladder, causing all sorts of trouble, doctors might not diagnose it as a UTI because it’s less than 100,000. It's like being just one short of winning a prize - frustrating, right?

It’s ridiculous to consider that 99,999 is negative for UTI but 100,000 is positive. We are still playing by these rules!

The arbitrary nature of the 100,000 threshold means that it may overlook cases where lower bacterial concentrations are still causing significant bladder symptoms and discomfort. This can lead to underdiagnosis and undertreatment of UTIs, resulting in prolonged suffering for patients. Moreover, there's a concerning risk that individuals are being misdiagnosed with interstitial cystitis due to the flawed testing methods.

Most GPs, nurses, and pharmacists have never even heard of the name “Kass criteria”. They just assume the lab test run by the specialist must be the gold standard. Yet 100,000 bacteria per millilitre is quite a high concentration. And this concentration can get diluted when we drink more water. The fall out from all of this is that women risk being fobbed off and questioned…

Maybe, “it’s just stress”, “it’s all in your head”, “it’s just your age”, “it must be thrush”. It may lead to a misdiagnosis of interstitial cystitis because all your tests look “normal”.

Why are we still using outdated UTI test methods

WHY ARE WE STILL USING OUTDATED UTI TEST METHODS?

This past month, I attended Antibiotic Research UK’s conference focused on chronic and recurring Urinary Tract Infections (UTIs).

The gathering shed light on the critical importance of antibiotic research within the UTI community, unveiling sobering statistics and key insights that underscore the pressing need for innovation and reform in our approach to UTI testing, diagnosis and treatment.

First off, here are some of the eye-opening statistics and revelations from the session:

  • Resistance on the Rise: A staggering 34% of UTI samples analysed were found to be resistant to Trimethoprim, marking a significant increase from 29.1% in 2015.

  • Antibiotic Innovation Stagnation: Shockingly, only ONE new class of antibiotics has been discovered since the 1980s, highlighting the urgent need for new treatment solutions.

  • Global Threat of Antimicrobial Resistance (AMR): Antimicrobial resistance poses a major global challenge, contributing to 25,000 deaths per year and extending hospital stays by an additional 2.5 million days in the EU alone.

One of the key takeaways from the conference was the need to reassess current diagnostic practices for UTIs. Traditional methods, such as dipstick tests and urine cultures, have long been relied upon for diagnosing UTIs. However, we know these tests have significant limitations and inaccuracies. It’s why you’ll only find PCR and NGS urinary screening in the Heal your Bladder programme.

Despite updated guidelines from organisations like the National Institute for Health and Care Excellence (NICE) acknowledging the limitations of traditional diagnostic methods, changes in clinical practice have been slow to materialise. The sheer volume of guidelines and updates across various medical specialties can make it challenging for doctors to stay abreast of all changes, leading to delays in adopting new approaches to UTI diagnosis and treatment.

So, in a nutshell:

We've come a long way in understanding the limitations of traditional UTI diagnostics, but there's still plenty of room for improvement. Relying solely on those old dipstick and culture tests could mean you're not getting the right diagnosis or treatment. It's pretty frustrating that doctors are still sticking to these outdated rules, like that 100,000-bacteria-per-millilitre thing, especially when we know infections can be caused by more than one type of bacteria.

And let's face it, being dismissed or misdiagnosed by your doctor just leads to more suffering and annoyance. Even though NICE has tried to update the guidelines, the way we diagnose UTIs is still kinda messed up.

That's why I've put together the Heal Your Bladder Programme.

We're talking top-notch urinary and vaginal microbiome screenings here, using the latest PCR and NGS technology to really get to the bottom of things. If you've been told you've got interstitial cystitis based on those old culture tests and dipsticks, there's a good chance there's more to your story. I’d love to help you identify what’s really at the heart of your non-stop-peeing and painful bladder.


 

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