Have you been told you have interstitial cystitis (IC) or painful bladder syndrome (PBS), overactive bladder (OAB) or urethral syndrome (US)? New research suggests these conditions could be undetected bacterial infections.

The view among most doctors and urologists is that chronic (long-term) lower urinary tract symptoms (LUTS) – including bladder and urethral pain, urgency, frequency, voiding symptoms and incontinence – are caused by inflammation.

But inflammation itself has to be caused by something… and doctors who believe that chronic LUTS are caused by inflammation mostly admit they do not know why the urinary tract becomes inflamed.

New research has shown that:

  • Dipstick tests and mid-stream urine cultures are ineffective – missing up to half of infections
  • Bacteria that cause urinary tract infections can live in the bladder wall or in biofilms which means that short courses of antibiotics aren’t effective.

A growing body of evidence now suggests these urinary ‘syndromes’ could be undetected and therefore untreated bacterial infections

Why are people diagnosed with interstitial cystitis (IC), painful bladder syndrome (PBS), overactive bladder (OAB) or urethral syndrome (US)?

When cystitis or lower urinary tract infection fails to clear with antibiotics and investigations show no other cause for a patient’s symptoms, doctors often start to talk about interstitial cystitis (IC), painful bladder syndrome (PBS), overactive bladder (OAB) and urethral syndrome (US). The terms IC and PBS are often used interchangeably.

IC, PBS, OAB and US are descriptions for a number of symptoms which often occur together after a urinary tract infection. They may feel exactly the same as a UTI but tests for infection are negative.

As many as 1.6 million women in the UK suffer from long-term lower urinary tract symptoms, a recent study by the Rand Corporation found. A separate study by Rand corporation found that a similar number of men are also affected.

How are ‘urinary syndromes’ diagnosed?

Investigations include:

  • Ultrasound scans to test the kidneys and whether the bladder empties properly
  • Cystoscopies where a camera is inserted into the bladder
  • Biopsies where cells from the wall of the bladder are removed
  • Urodynamics testing where the patient is catheterised and their bladder filled with liquid to analyse how they pass urine
  • Some specialists may look for the presence of specialised ‘mast’ cells in the bladder wall which are associated with inflammation.

It is thought to be caused by having a ‘too narrow’ urethra (the tube urine passes through when you pee) but this is a theory rather than something measurable in most people.

These tests are expensive, painful, invasive and give little useful information.

Interstitial cystitis, painful bladder syndrome and urethral syndrome are ‘diagnoses by exclusion’

All of these diagnoses start with a negative dipstick test and urine culture. All of them fail to identify a cause for a patient’s symptoms.

So, IC, PBS and US are known as ‘diagnoses by exclusion’. They are simply shorthand descriptions for a group of symptoms which often occur together after a urinary tract infection.

What does the NHS have to say about interstitial and painful bladder syndrome?

The NHS Choices website says this on interstitial cystitis and painful bladder syndrome:

“Interstitial cystitis is a poorly understood bladder condition that causes long-term pelvic pain and problems with urination. It’s also known as ‘painful bladder syndrome’ or bladder pain syndrome.”

What causes interstitial cystitis?

The exact cause of interstitial cystitis isn’t clear. Unlike other types of cystitis, there’s no obvious infection in the bladder and antibiotics don’t help.

There are several theories about the possible cause of the condition, including:

  • damage to the bladder lining, which may mean urine can irritate the bladder and surrounding muscles and nerves
  • a problem with the pelvic floor muscles (used to control urination)
  • your immune system mistakenly attacking your bladder
  • an allergic reaction

Treatments for interstitial cystitis

Unfortunately, there’s currently no cure for interstitial cystitis and it can be difficult to treat, although a number of treatments can be tried.

Current treatments for interstitial cystitis, painful bladder syndrome, overactive bladder or urethral syndrome?

At the moment the outlook for people diagnosed with IC/PBS/OAB or US is grim. Popular advice includes making lifestyle changes and learning to cope.

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.

As no treatment does very well in trials, there is no universally agreed care pathway. Standard treatments are known to be ineffective and often risky. They aim only to help with symptoms rather than trying to cure.

Find out more

If you’ve been diagnosed with a urinary ‘syndrome’ it could be an untreated bacterial infection or chronic UTI.  Learn more about chronic UTI.

We explain the standard investigations and treatments so you can research and decide if you want to have them.

Find out current treatment options for chronic UTI.

Take a copy of our chronic UTI guide for GPs to your next appointment. It explains the problems with testing and gives advice on how best to help patients.

"I was told that I had interstitial cystitis and that all they could do was manage my symptoms. This procedure made my condition far, far worse than I was able to cope with. In time, I lost my identity, my job and all of my confidence."

Kirstin, who works in the music industry, was admitted to hospital 24 times with UTIRead more stories