Typically, patients describe a similar story, lasting an average of 6.5 years that commenced with an acute UTI that responded partially to a short antibiotic course (3 days to 14 days). Most patients have been exposed to repeated courses of antibiotics, but these have ceased in the face of normal urinalyses, despite persisting symptoms. They continue to suffer low- grade lower urinary tract symptoms including bladder pain, with symptoms fluctuating and acute exacerbations several times a year. Urinalysis has usually been negative and the investigations, including urodynamics, cystoscopy, bladder biopsy, renal tract ultrasound, CT and MRI scans, have been unhelpful apart from the biopsies manifesting inflammation of the bladder mucosa.
Such patients have likely been diagnosed with Interstitial Cystitis or Bladder Pain Syndrome. They have failed to respond to cystodistension, urethral dilation, antimuscarinics, bladder instillations, Elmiron and various short-course and prophylactic low-dose antibiotic regimes. It is quite common for their symptoms to be attributed to psychological origins.
Interstitial Cystitis or Bladder Pain Syndrome is "a diagnosis of exclusion".
It was invented, with no clear pathophysiology, to label patients with UTI symptoms but negative UTI tests. However, it is now understood that by and large, it’s the tests that lack accuracy, and that the vast majority of such patients do in fact have a UTI. We must look closely and discover the root cause of urinary symptoms.
That’s not to say that strictly 100% of people with such symptoms have an infection.
There are likely exceptions (radiation cystitis is an example).
However, it remains the case that:
Infection is generally the most probable explanation;
Signs that are classically attributed to IC (Hunner’s ulcers, glomerulations, mast cells) are consistent with infection
Even in those without UTI, the label of IC is of dubious value. It does not explain anything.
We encourage anyone reading who is suffering with a diagnosis of IC/BPS to book an appointment with a Chronic UTI Specialist and rule out an embedded infection.