Interstitial cystitis (bladder pain syndrome): symptoms and treatment

The NHS lists the symptoms of bladder pain syndrome as bladder pain or pain in the lower tummy or back, feeling you need to pee even when the bladder is empty, and peeing often, usually small amounts, during the day. Other symptoms are waking at night to pee, leaking a small amount of pee if you do not get to a toilet quickly enough, and pain during sex.

You may feel discomfort when the bladder fills after drinking and some relief when you pee. Symptoms come and go. The NHS says there are usually times when they get worse, called flare-ups, and times when they are better.

Bladder Health UK describes the main symptoms as frequency (day and night), urgency that may come with pain, pressure or spasms, and pain in the abdominal, urethral or vaginal area, often linked to sex.

Bladder Health UK defines interstitial cystitis (IC) as a chronic inflammation of the bladder wall, which can also be diagnosed as bladder pain syndrome. The two names are used for the same condition, often written IC/BPS.

The NHS says there is currently no cure, but that treatment can help manage symptoms. It describes BPS as more common in women than men and usually affecting people aged 40 or above. Bladder Health UK adds that because it is a diagnosis of exclusion with no definitive test, it is difficult to estimate how common it is.

The NHS says the symptoms are caused by the inner lining of the bladder (the bladder wall) becoming irritated and inflamed, but it is unclear why this happens in some people.

The NHS says it is thought it may be caused by the immune system mistakenly attacking the bladder wall, or by a problem with the bladder wall that makes it easily irritated by substances in your pee. You are more likely to get BPS if you already have another long-term pain condition such as fibromyalgia. Bladder Health UK says the cause is not yet known and research continues.

The NHS says there is no single test that can diagnose BPS. Because the symptoms can look like a urinary tract infection and other bladder problems, you may need several tests to check for other conditions.

• A blood test and a pee (urine) test.

• A physical examination of the pelvis and genitals, which may include an internal vaginal examination.

• An ultrasound scan of the tummy.

• A cystoscopy, which looks inside the bladder with a thin tube with a camera.

• Measuring the pressure inside the bladder using a thin tube (catheter).

The NHS says your doctor will talk to you about the options and what might work best for you. If treatment is not working or symptoms are severe, you may be referred to a urologist, a specialist in bladder conditions.

The NHS suggests keeping a food diary to track what you eat and drink, because certain foods and drinks may make symptoms worse, for example by making you pee more. It advises avoiding too much spicy or acidic food, such as citrus fruits, and too much alcohol or caffeine, including energy drinks, tea and coffee.

Bladder Health UK says a large number of people find that certain foods or drinks, and even clothing, aggravate their condition, and that lifestyle changes such as relaxation, diet, exercise, suitable clothing and planned travel can help people cope. Triggers differ from person to person, so avoid cutting out whole food groups without advice.

The NHS recommends regular low-impact exercise such as walking, swimming or yoga, and relaxation techniques such as meditation, as these may help some symptoms. It also lists support for low mood or anxiety and advice on how symptoms may affect sex life.

Bladder Health UK says many people find their life revolves around knowing where the nearest toilet is, that severe symptoms can leave some people virtually housebound, and that bladder problems are often hidden disabilities that can feel isolating. It suggests working with your GP and urologist to find the right treatment, learning to manage flares with self-help and medication, and connecting with others who understand.

The NHS says to see a GP if you have pain in your bladder, lower tummy or back that does not go away or keeps coming back, or if you are peeing much more than usual.

It says to ask for an urgent GP appointment or get help from NHS 111 if you have blood in your pee (bright pink, red or dark brown), or if you have bladder, lower tummy or back pain together with a very high temperature, feeling very hot, or cold and shivery. These can be signs of an infection.

On the NHS, bladder pain is usually assessed by a GP, who arranges urine tests and rules out infection before referring to a urologist or specialist bladder service if symptoms persist. Cystoscopy and bladder pressure studies happen in hospital.

Private urology clinics can offer the same investigations and some treatments, often with shorter waits. Because the condition is diagnosed by excluding others and may need several treatments tried in turn, it helps to ask who will coordinate your care over time and to keep a record of what you have tried.