What is chronic UTI? – CUTIC

What is a urinary tract infection (UTI)?

Infections of the lower urinary tract affect the bladder and urethra (the tube urine passes through on its way out of the body). UTIs happen when disease-causing bacteria gain the upper hand amongst the normal urinary tract bacteria and attack the tissues of the urinary tract.

Women are more likely to suffer from UTIs but the explanations for this are based on speculation. But men and children also get UTIs. There’s not enough research to understand why some people never experience a UTI, why some people have one or two infections and why some people develop chronic infections.

How does a chronic UTI start?

A chronic UTI starts with an acute infection that doesn’t get better or seems to clear up but comes back repeatedly. Short courses of between one to three days are too short to clear infection and symptoms return a few days after finishing the course of antibiotics.

the urinary tract infection loop that patients face

Needing to pee all the time, pain when you pee, passing tiny amounts of urine, bladder and urethral pain, pain in your belly, back and legs, difficulty passing urine, problems with incontinence. The symptoms of chronic UTI are similar to acute infections but they vary from person to person.

It’s not clear why some people suffer from chronic infections while others get better. But what is known is that chronic UTIs wreck lives. Sufferers are left with debilitating, life-changing symptoms including urinary frequency (needing to pee dozens of times a day), urinary urgency, agonizing pain, unable to sleep properly, work, look after children and have normal sexual relationships. Their lives grind to a halt.

How does an infection become chronic?

Chronic UTIs develop when ‘acute’ or ‘simple’ infections are left untreated or fail to get better with standard treatments such as over-the-counter remedies or the short courses of antibiotics that GPs usually prescribe.
Over time the bacteria that cause UTIs move from the urine and into the cells of the bladder wall where they are protected from antibiotics and become harder to kill. Bacteria cause the bladder cells to become inflamed. This allows the bacteria to ‘stick’ to the tissues and become harder to flush out.

We explain how a chronic UTI develops – brought to life with some great images.
Diagram of how a chronic UTI develops

Why is this able to happen?

UTIs are becoming harder to treat and the short courses of antibiotics that official National Institute for Health and Care Excellence (NICE guidelines in England, SIGN guidelines in Scotland) for GPs recommend are not effective against chronic infections. Research shows that:

  • Bacteria are becoming resistant to antibiotics that have traditionally been used to treat UTIs so these drugs are now less effective
  • Bacteria are able to protect themselves against both antibiotics and the body’s own immune system by hiding inside the cells of the bladder wall and in ‘biofilms’ that already exist on the tissues of the urinary tract
  • Prescribing a single antibiotic may not be enough. Chronic UTIs are usually multibacterial (caused by several different types of bacteria). Antibiotics affect the natural balance of bacteria that are present even in healthy bladders. So knocking out one type of bad bacteria may cause another type to multiply and become an infection.

But there is another reason that chronic infections develop and this is a problem with the testing methods GPs and urologists rely on to diagnose a UTI.

Tests for UTI are inaccurate and based on science that is out of date

GPs and urologists rely on dipstick tests and urine cultures to diagnose bacterial infections. Recent studies have found that dipstick tests miss more than half of infections and urine cultures miss two-thirds of infections. A misplaced faith in these tests has led to a massive misunderstanding in mainstream medicine.

When dipstick tests and cultures fail to identify an infection, doctors and urologists can dismiss bacterial infection and look for other causes. Patients can then undergo investigations including ultrasound scans to test the kidneys; cystoscopies where a camera is inserted into the bladder; and urodynamics testing where the patient is catheterised and their bladder filled with liquid to analyse how they pass urine.

These tests are painful, invasive and give little useful information. After they fail to show a physical cause other than signs of inflammation in the bladder, many people with chronic UTI are told that they have interstitial cystitis (IC), painful bladder syndrome (PBS), urethral syndrome (US) or an overactive bladder (OAB).

The myth of interstitial cystitis and bladder syndromes

IC and bladder syndromes are known as ‘diagnoses by exclusion’. They don’t identify a reason for a patient’s symptoms, they simply describe collections of symptoms. For example, the NHS Choices website describes IC as a “poorly understood, incurable condition”.

There is no agreed cause or cure for IC and bladder syndromes. But there is a view among many doctors – based on tests which are known to be ineffective – that they are not caused by bacteria. Sufferers are offered surgery or prescribed painkillers, including opiates, bladder relaxants and bladder instillations (where medication is put directly into the bladder) to alleviate symptoms.

Bladder instillations had no more effect than a placebo, a recent large-scale study found. A growing body of evidence suggests that long-term bladder and urinary pain may be caused by infections missed by tests that don’t work.

So how big is the problem?

It’s a massive problem. Up to 1.7 million women in the UK suffer from chronic lower urinary tract symptoms. A recent study found and other research suggests a similar number of men could be affected. A growing body of international research suggests that many people suffering from long-term urinary problems may have undiagnosed bacterial infections.

Yet the National Institute for Health and Care Excellence (NICE guidelines in England, SIGN guidelines in Scotland) guidelines do not recognise the existence of chronic UTI and – when tests results are negative and short courses of antibiotics fail to work – many specialists seem unwilling to accept that chronic urinary symptoms can be caused by bacteria.

Patients are routinely dismissed as anxious and offered counselling and psychiatric referrals. Sufferers are forced to live in agony and lack quality of life, without ever finding effective treatment or anyone to diagnose and understand their condition. Stuck in a chronic UTI loop.

the problem with tests to detect chronic urinary tract infections

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“I had a UTI aged 15 which went away in one day with antibiotics. I never gave it a second thought but then ten months ago I got another. My GP prescribed three days of antibiotics and I felt better but on day four my symptoms came back. I was in the worst agony of…

Rebecca was 23 when she developed a chronic UTIRead more stories

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