Interstitial Cystitis

Interstitial cystitis affects both genders, though 9 out of 10 cases are found in women. Up to 75% of those affected are over the age of 30. It's also found in a growing number of children.

Interstitial cystitis is caused by inflammation of the bladder lining. It is also known as painful bladder syndrome, chronic pelvic pain syndrome and frequency-urgency-dysuria syndrome.

Normally, the bladder wall has a lining that protects it from toxins in the urine. In people with interstitial cystitis, this protective layer breaks down, allowing toxins to irritate the bladder wall. The bladder then becomes inflamed and tender and does not store urine properly.

Please note: the information below does not constitute medical advice. If you have any concerns at all, speak to your GP or consultant.


If you are worried about your urinary symptoms, download the My WaterWorks Medical app and fill in the questionnaire which can be presented to your GP. 

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Learn more about Interstitial Cystitis

Interstitial Cystitis symptoms

Interstitial cystitis is different from common cystitis, which is an inflammation of the bladder caused by bacterial infection and is usually easily treated with antibiotics. No-one really knows what causes interstitial cystitis and it does not respond to antibiotics. Although there is no cure for interstitial cystitis, most patients find some relief with treatment and lifestyle changes.

Interstitial cystitis is difficult to diagnose. Sufferers sometimes see several doctors over the course of a few years before a diagnosis is made. Symptoms of interstitial cystitis are present all of the time and can include any of the following:

  • Frequency: the need to urinate often, day or night, up to 60 times a day in severe cases.
  • Urgency: feeling the need to urinate at once, often with pain, pressure or spasms.
  • General pain in the abdomen, urethra or vaginal area or during sexual intercourse.

Symptoms usually worsen over the first 5 years and then level off. After this, you may have periods when symptoms lessen, followed by bad times, where the symptoms flare up.


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Interstitial Cystitis

Interstitial Cystitis diagnosis

The symptoms of interstitial cystitis are similar to those of many other conditions, so tests need to rule these out.

A doctor will first take a urine sample and check for bacteria and signs of infection. In men, fluid from the prostate may also be taken for examination. If there are no signs of infection, your GP may refer you to a urologist for further tests, starting with:


  • The main way of diagnosing interstitial cystitis.
  • Your bladder is filled with water. A thin tube with a camera on the end (a cystoscope) is inserted through the urethra up to your bladder.
  • Glomerulations (tiny bleeds that are the tell-tale sign of interstitial cystitis) are seen only while the bladder is full. These bleeds are present in 95% of cases of interstitial cystitis.

Less commonly, ulcers and scars are found on the bladder lining. A biopsy, in which a tiny piece of the ulcer is removed and analysed, is carried out to make sure that the ulcers are not cancer-related.

Cystoscopy may also show up bladder stones, which can cause symptoms similar to those of interstitial cystitis.


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Interstitial Cystitis treatment

There is no cure for interstitial cystitis. The main aim of treatment is to relieve symptoms. Sometimes a combination of treatments works best. Most patients find some relief from the symptoms of interstitial cystitis.

Bladder distension (stretching)

  • Symptoms occasionally improve after cystoscopy (when the bladder is filled with water).
  • Cystoscopy may be used as both an investigation and a treatment.

Bladder retraining

  • A series of exercises in which you “retrain” the bladder to control the urge to urinate.
  • Generally, you would have a schedule where you only urinate at specific times.
  • Relaxation techniques and distractions help you keep to the schedule. The time between each urination is gradually lengthened until your bladder muscles strengthen.

Transcutaneous electrical nerve stimulation (TENS)

  • Skin pads send mild electric pulses to the body.
  • Electric pulses may increase blood flow to the bladder, strengthen pelvic muscles and trigger the release of special hormones that block pain.
  • You may have to use TENS for a couple of months before it begins to work.


  • Some people find that avoiding acidic, spicy or sugary foods, dairy products and alcohol helps to control symptoms.
  • Smoking is also linked to stronger symptoms.

Surgical treatment

Surgery is typically performed only when other treatments do not work. However, it isn't always effective and may even make the symptoms worse.

Ulcer removal

  • If you have ulcers on the bladder lining, these may be removed by laser treatment or surgery.
  • Performed with a cystoscope inserted through the urethra under general anaesthesia.

Bladder removal (cystectomy)

  • Under a general anaesthetic, a doctor re-routes the ureters into a small piece of bowel so that the open end emerges from the skin of your abdomen.
  • The hole on the surface of your abdomen, where the urine will now pass, is called a stoma.
  • Urine will be collected from the stoma in a flat watertight bag, which you will have to empty regularly.
  • Even after the bladder is removed, some people still have symptoms, so this operation should only be carried out after extensive discussions with your doctor.

Need more information?

Speak to your GP if you're worried about any symptoms or the treatment of interstitial cystitis. You can also find other useful websites via our links section.


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How You Can Help

All of the work that we do to fight urology disease is funded by supporters across the country. Without support from people like you, we cannot do what we do.

When you donate to The Urology Foundation you join the front line of the fight against urology disease. Your money helps us to:

  • Fund ground breaking research into urology diseases so that we can find better cures and treatments
  • Provide training and education to equip all urology professionals with the tools they need to support and treat patients in hospitals across the UK and Ireland

Donate today to be a part of this fight. Or, to find out other ways you could support TUF, visit our Get Involved page.


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