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Interstitial cystitis

What is interstitial cystitis?

Interstitial cystitis, also known as painful bladder syndrome, is a chronic inflammation of the bladder wall that may cause chronic pelvic pain along with a frequent and urgent need to urinate, often only producing small amounts of urine. Although symptoms often resemble those of a urinary infection, the urine is usually sterile.

At least 400,000 people in the UK have interstitial cystitis. Around 90% of them are women.

Symptoms of interstitial cystitis

Frequent urination or an urgent need to go to the toilet are common symptoms of interstitial cystitis, meaning people need to stay close to a toilet.

The condition can cause discomfort and pain in and around the pelvic area, including the bladder, urethra and vagina.

Pain may be worse with a full bladder, and for women discomfort may be worse during a period. Sexual intercourse is often painful.

The cause of interstitial cystitis isn’t fully understood, but it may be due to a defect in the bladder lining or an autoimmune disorder. It is possible a person's risk of developing it may be inherited or linked to other inflammation problems.

Treating interstitial cystitis

There is no single or simple treatment for interstitial cystitis and you may need to try a variety of approaches in order to find relief. Options may include painkillers, anti-inflammatory or anti-spasmodic drugs, antihistamines or antidepressants.

Antibiotics do not help as there is usually no infection present.

Other techniques that may help include:

  • Increasing the volume that the bladder can hold by stretching the walls. This is known as bladder distension and is achieved by filling the bladder with a sterile fluid and keeping it distended for 10 or 15 minutes
  • Filling the bladder with a liquid medication to reduce inflammation, called bladder instillation.
  • Various forms of nerve stimulation may help to reduce the frequency of urination by strengthening bladder muscles or blocking pain impulses.

In other cases, an operation may be recommended.

How does a doctor diagnose interstitial cystitis?

There is no one test that is specific for interstitial cystitis. A referral to a specialist urologist may be recommended by a GP.

First, other causes of pelvic and bladder pain and urinary symptoms will need to be ruled out, including:

The doctor will start by asking you about your symptoms. You may be asked to keep a bladder diary, also known as a frequency volume chart, recording when you have a drink and the frequency and volume of urination. The doctor will usually give you a physical examination and arrange a series of tests to rule out other possible causes. Those tests may include:

  • Urine analysis and urine culture. This involves dipstick testing a sample of urine and having the urine examined in the lab. Red and white blood cells and bacteria in the urine can indicate an infection. If the urine is sterile while symptoms persist, the doctor may suspect interstitial cystitis.
  • Ultrasound. An imaging test is performed to visualise inner organs such as the bladder, kidneys and ureters.
  • Cystoscopy with bladder distention. With this test, a specialist looks at the inside of your bladder using a cystoscope. That's a hollow tube with a light and lenses that the doctor inserts through the urethra, the tube that urine passes through when you urinate. During the examination, the specialist may fill the bladder with liquid to distend or stretch it. This allows a better view of the walls and makes it easier to check for abnormalities. This procedure is done with some form of anaesthesia so you should not feel any pain.
  • Biopsy. During the cystoscopy, the specialist may take a small sample of tissue to examine under a microscope to rule out other conditions such as bladder cancer. Having interstitial cystitis does not increase your risk of bladder cancer.
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