Interstitial cystitis

What is interstitial cystitis?

Interstitial cystitis, also called bladder pain syndrome, is a long-term condition where your bladder feels sore or under pressure, often along with needing to pee more urgently and more often than usual. There's no cure yet, but the right treatment plan can ease your symptoms and help you cope with flare-ups.

Symptoms of interstitial cystitis

Interstitial cystitis (IC) affects people differently. Some people notice only mild discomfort, while others have constant pain and urgency that disrupts daily life. You might notice:

• pain, pressure or a heavy feeling in your bladder, lower tummy, back or pelvis, often worse when your bladder is full and eased once you've been to the toilet
• needing to pee far more often than normal, even though each trip only produces a small amount
• a sudden, strong urge to pee, sometimes straight after your last visit to the toilet
• needing to get up in the night to pee
• an occasional small leak on the way to the bathroom, particularly during a bad flare
• discomfort or pain during sex

Where you feel the pain can differ between men and women. Women often feel it in the pelvis, vulva or vagina, and sex can bring it on. Men may feel it in the scrotum, penis, testicles or rectum, and sometimes notice it after ejaculation.

Symptoms tend to come and go, with flare-ups followed by calmer spells. Stress, certain foods and drinks, sexual activity and the menstrual cycle are all common triggers, and some women find their symptoms are worse around ovulation or just before their period.

Causes and risk factors

Doctors don't fully understand what causes interstitial cystitis, and more than one factor may be involved. In some people, the body's immune defences seem to target the bladder wall by mistake, causing inflammation. In others, the bladder lining itself may be extra-sensitive, reacting badly to substances that are normally harmless in urine.

Other possible factors include allergies, problems with your blood vessels, and unusual mast cell activity. Some people with IC also have abnormal substances in their urine, or a longstanding low-level infection that standard tests fail to pick up.

Recreational ketamine use is another recognised trigger, causing bladder inflammation that can feel just like IC, so it's worth mentioning this to your doctor if it applies to you.

You may be more likely to develop IC if you:

• are female
• are over 30 (the NHS notes it's most common from age 40 onwards)
• already have another long-term pain condition, such as fibromyalgia

Types of interstitial cystitis

Interstitial cystitis is generally grouped into two types. Ulcerative IC means you have Hunner’s ulcers, small sore patches inside the bladder, and this affects around 5–10% of people with IC. Most people (about 90%) have non-ulcerative IC instead, where tiny bleeding points called glomerulations appear on the bladder wall rather than ulcers.

If symptoms carry on for longer than two years, doctors sometimes call this stage 4 IC. Your bladder wall can stiffen over time, meaning it holds less urine than before, and this stage is most often seen in people who also have Hunner's ulcers.

How is interstitial cystitis diagnosed?

There's no single test that confirms interstitial cystitis. Instead, your doctor will rule out other conditions that cause similar symptoms, such as urinary tract infections and bladder cancer. In men, an inflamed prostate (prostatitis) is usually ruled out too.

Your doctor will usually start by asking about your symptoms in detail, and might suggest a diary noting your fluid intake, toilet trips and pain patterns over a few days. A urine test to check for infection and a physical or pelvic exam are also standard.

You might also be offered a blood test, an ultrasound scan of your tummy, or a urodynamic test, where a thin tube records how well your bladder fills and empties. You may also need a cystoscopy, where a specialist passes a narrow, flexible scope through your urethra to examine the bladder lining directly, which can help confirm the diagnosis and rule out other causes.

Sometimes doctors combine this with hydrodistension, gently filling your bladder with fluid while you're under anaesthetic to stretch it out. This can show up areas of damage on the bladder wall, and quite a few people notice their symptoms ease for a while afterwards.

A small tissue sample (a biopsy) might also be taken from inside your bladder under sedation, mainly to check for other possible causes of your symptoms, including cancer of the bladder.

How is interstitial cystitis treated?

There's no cure for interstitial cystitis, but most people find that a combination of treatments helps keep symptoms manageable. It often takes some trial and error to find what works for you, and treatment is usually ongoing rather than a one-off fix.

Non-surgical treatments

A good starting point is looking at your diet and daily habits. Keeping a diary of what you eat and drink can help you spot your own triggers. Common triggers include caffeine, alcohol, fizzy drinks, artificial sweeteners, and acidic or spicy food such as citrus fruit. Gentle, regular exercise, such as swimming, cycling, walking or yoga, along with relaxation methods such as meditation, may also help, since stress often makes flare-ups worse.

Your doctor might also suggest pelvic floor physiotherapy, to ease tension in the muscles supporting your bladder, or bladder retraining, a technique where you gradually stretch out the time between toilet visits.

A range of medicines can help too. Simple painkillers like paracetamol or ibuprofen, along with medicines originally developed for nerve pain, such as amitriptyline, gabapentin or pregabalin, are often the first options tried. If these aren’t enough, your doctor might add an antihistamine, a medicine to calm an overactive bladder such as oxybutynin, or pentosan polysulfate sodium, which is thought to help repair the bladder lining.

For symptoms that don’t settle with tablets, bladder instillations are an option: medicine is passed into your bladder through a thin catheter and left in place for a short while. Nerve stimulation techniques, which use mild electrical pulses to calm the nerves controlling your bladder, and Botox injections into the bladder muscle, are other possibilities, though Botox typically needs repeating every four to nine months.

Surgical treatments

Surgery is rarely needed for interstitial cystitis, and it's generally only considered once other treatments have been tried without success. Depending on your symptoms, options can include stretching the bladder under anaesthetic, or, if you have Hunner's ulcers, removing them using a laser or a surgical telescope.

A sacral nerve stimulator, a small device tucked beneath the skin of your lower back, is another surgical option; it works by sending signals that help control bladder function. For the small number of people whose symptoms are severe and haven’t responded to anything else, removing the bladder entirely (a cystectomy) may be recommended.

If this is your path, you'll need a new way to store and pass urine, usually created from a section of your bowel. This might be a stoma that drains continuously into an external bag, or a reconstructed internal pouch (a neobladder) that you empty yourself, sometimes using a catheter. A specialist stoma nurse will support you through this adjustment.

When should I see a doctor?

See your GP if bladder, tummy or back pain doesn't go away or keeps coming back, or if you notice you're needing to pee far more than usual.

Get an urgent GP appointment, or call 111, if:

• there's blood in your pee, which might look bright pink, red or dark brown
• you have pain along with a high temperature, or you feel unusually hot and shivery, both of which can point to an infection

If your symptoms are severe, or treatment isn't helping, ask about a referral to a specialist in bladder conditions (a urologist).