Bladder pain syndrome

Also called Interstitial cystitis, BPS, Painful bladder

Cystitis symptoms with no infection, for years. Repeated negative urine tests are the diagnosis, not evidence that nothing is wrong.

What it is

Persistent bladder pain and urinary urgency and frequency, without infection and without another explanation.

It affects women far more than men and is genuinely disabling: many people pass urine 20 or 30 times a day and get up repeatedly at night.

The defining experience is a long series of negative urine tests. Because the classic teaching is that cystitis means infection, people are given course after course of antibiotics that do nothing, and are eventually told there is nothing wrong. Average time to diagnosis is measured in years.

The mechanism is not fully understood, and probably involves damage to the bladder lining and sensitised nerves. That means it behaves like a chronic pain condition, and it responds to the things chronic pain responds to.

It overlaps substantially with irritable bowel syndrome, fibromyalgia, endometriosis and vulval pain, and treating the whole pattern works better than treating the bladder alone.

Recurrent genuine infection is a different thing and needs a different approach. So does blood in the urine, which always needs investigating. See bladder cancer.

Signs you might notice

Pain, pressure or discomfort in the bladder, lower abdomen, urethra or pelvis, often relieved briefly by passing urine and building again as the bladder fills.

Needing to pass urine very frequently, day and night, often in small amounts.

Urgency, sometimes constant.

Pain during or after sex.

Flares lasting days to weeks, often with identifiable triggers.

Urine tests that are repeatedly negative for infection.

Needing investigation rather than assuming this diagnosis: visible blood in the urine at any age; fever, back pain or feeling unwell, which suggests kidney infection; a new change in an older person; or inability to pass urine.

How it can affect day-to-day life

Life is organised around toilets. People stop travelling, working away from a desk, going to the cinema, staying overnight, and the isolation is profound.

Sleep deprivation from getting up all night compounds everything, including pain perception and mood.

Diet triggers are individual and worth identifying rather than assuming: caffeine, alcohol, citrus, tomatoes, spicy food and artificial sweeteners are the common ones. A systematic elimination and reintroduction beats a generic list.

The relationship and sexual impact is significant and rarely asked about.

Being disbelieved for years leaves people wary of services, and being told plainly that this is a recognised condition with a name is often the most valuable single appointment they have had.

Supporting someone well

Stop the antibiotic cycle. Repeated negative cultures with ongoing symptoms means this is not infection.

Ask for the name: bladder pain syndrome or interstitial cystitis, and for referral to urology or a specialist pelvic pain service.

Keep a bladder diary and a food and symptom diary; both guide treatment.

Identify personal dietary triggers by elimination and reintroduction rather than cutting everything.

Ask about bladder retraining and pelvic floor physiotherapy, with a focus on relaxing rather than strengthening the pelvic floor.

Ask about neuropathic pain medication, bladder instillations and other specialist treatments.

Treat sleep and mood as part of the condition.

Always get visible blood in the urine investigated separately.

Where to get help

A GP practice, asking for urology or pelvic pain referral rather than more antibiotics.

A specialist urology or pelvic pain clinic.

Bladder Health UK run a helpline and are the specialist charity.

Pelvic Obstetric and Gynaecological Physiotherapy list specialist pelvic physiotherapists.