Painful bladder syndrome (interstitial cystitis): symptoms, treatment and diet

The NHS lists the symptoms of bladder pain syndrome as:

• Bladder pain, or pain in your lower tummy or back.

• Feeling like you need to pee, even when your bladder is empty.

• Peeing often, usually small amounts, during the day.

• Waking up at night to pee.

• Leaking a small amount of pee if you do not get to a toilet quickly enough.

• Pain during sex: women can find penetration painful and men can find getting an erection painful.

The NHS says you may feel discomfort when your bladder fills up after drinking, and you may get some relief when you pee. Plymouth NHS says pelvic pain is the most common symptom, typically felt in the lower abdomen, pelvis, urethra or vagina, often worse when the bladder is full and relieved on emptying. Because of that, people often empty the bladder frequently to avoid the pain, which is different from overactive bladder, where people empty to prevent leaking. Plymouth NHS says urgency is less common than in bacterial cystitis or overactive bladder.

The NHS says symptoms of BPS can come and go over time, with flare-ups and better times. Plymouth NHS notes the condition is commonly associated with depression, vulvodynia (vulval pain), irritable bowel syndrome and fibromyalgia, and the NHS says you are more likely to get BPS if you already have another long-term pain condition like fibromyalgia.

The NHS says there is currently no cure, but your doctor will talk to you about the different options and what might work best. If treatment is not working or symptoms are severe, you may be referred to a urologist.

The NHS suggests keeping a food diary to track what you eat and drink, because certain foods and drinks may make symptoms worse. It advises not eating too much spicy or acidic food such as citrus fruits, and not having too much alcohol or caffeinated drinks such as energy drinks, tea or coffee.

Plymouth NHS says chocolate, which is also high in caffeine, and spicy or acidic foods are common bladder irritants, and suggests eliminating one type of food every 2 to 3 weeks to see if symptoms improve. It lists water, milk, soups and diluted fruit juices as non-irritating, says your body needs about 2 litres of fluid a day, and suggests diluting a third of a glass of pure fruit juice with water instead of diet drinks. It also advises avoiding constipation with fruit and vegetables, because a full bowel can worsen bladder problems. Triggers differ from person to person, so use your own diary rather than a fixed list.

The NHS says other treatment and support can include physiotherapy to strengthen the pelvic floor muscles, bladder retraining exercises, help with managing long-term pain, mental health support if you have low mood or anxiety, and advice on what to do if symptoms are affecting your sex life. It suggests regular low-impact exercise such as walking, swimming or yoga, and relaxation techniques such as meditation.

Plymouth NHS gives these tips: stop smoking, because cigarette smoking and nicotine are immediate bladder irritants; drink plenty of water, because too little can lead to concentrated urine and constipation, which can irritate the bladder; empty your bladder before and after sex; keep a healthy weight; and use bladder training, with a strict toilet routine and avoiding going to the toilet "just in case", because over time too little fluid can make your bladder feel full even when it is not.

The NHS says the symptoms are caused by the inner lining of the bladder wall becoming irritated and inflamed, but it is unclear why this happens in some people. 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 the pee. Plymouth NHS says the precise cause is unknown and lists possible causes including injury to the bladder such as childbirth, bladder catheters or bladder infection, and says one common theory is a defect in the protective barrier layer inside the bladder.

The NHS says there is no single test that can diagnose BPS, and you might need several tests to check for other conditions that could be causing your symptoms, such as a urinary tract infection. These can include a blood test, a urine test, a physical examination of your pelvis and genitals (which may include an internal vaginal exam), an ultrasound scan of your tummy, a cystoscopy to look inside your bladder with a thin tube with a camera, and measuring the pressure inside your bladder with a thin tube (catheter).

Plymouth NHS says BPS is a diagnosis of exclusion, based on the patient's report of symptoms after other causes are ruled out, and that you may be given a bladder diary. It adds that you can have BPS and develop a UTI, which may exacerbate symptoms, and the UTI should be treated promptly.

Plymouth NHS draws these distinctions.

The NHS says there is no cure and symptoms come and go. The sources read do not say how long a typical flare-up lasts. The NHS says BPS is more common in women than men, and Plymouth NHS says about 90% of sufferers are female. The NHS names pain during sex and difficulty getting an erection as symptoms in men. If you are a man with bladder or pelvic pain, see a GP.

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 you are peeing much more than usual. 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 bladder, lower tummy or back pain with a very high temperature or feeling very hot, or cold and shivery, which could be signs of an infection.

On the NHS, a GP can arrange tests, start treatment and refer you to a urologist or gynaecology bladder clinic if treatment is not working. Some treatments, such as instillations, are given in hospital clinics. Some people pay privately for a quicker cystoscopy or specialist opinion. Whichever route you use, ask for results to be copied to your GP and keep a symptom diary to share.