Interstitial cystitis 

Interstitial cystitis causes recurring discomfort in the bladder and pelvic area. The symptoms vary between individuals, but some people can experience intense pain.

The pelvic pain may increase with a full bladder, when urinating, during periods or while having sex.

Like regular cystitis, interstitial cystitis can cause an urgent and frequent need to urinate. However, the condition doesn't respond to treatment with antibiotics as it is not caused by a bacterial infection.

Around 400,000 people in the UK have interstitial cystitis. More than 90% of these cases are in women. It's often diagnosed at around the age of 40.

Interstitial cystitis can have a significant effect on a person's lifestyle and daily habits. Many people find the pain affects relationships or work and the frequent need to urinate can be tiring or embarrassing. For some people, this can lead to further problems such as depression or avoiding leaving the house.

What causes interstitial cystitis?

It's not clear what causes interstitial cystitis, but researchers are investigating whether the condition is inherited. It also may be associated with other conditions, such as irritable bowel syndrome and fibromyalgia, as many women with interstitial cystitis also have these conditions.

Another theory is that one of the protective layers of the bladder wall may "leak" in people with interstitial cystitis, allowing chemicals in the urine to irritate the bladder.

People who have interstitial cystitis often have small areas of scarring, stiffness or bleeding on the wall of their bladder. Around 5-10% of people with interstitial cystitis have patches of inflammation and broken skin in the bladder, which leads to more severe symptoms. These are known as Hunner's ulcers.

Read more information about interstitial cystitis on The Cystitis and Overactive Bladder Foundation website.

Lifestyle changes

It may be possible to reduce the symptoms of interstitial cystitis by making some lifestyle changes.

Clothing

Avoid clothes and belts that are tight fitting, especially if they put pressure on your waist or tummy.

Smoking

There is some evidence that smoking can make the symptoms of interstitial cystitis worse.

Smoking is also a potential cause of bladder cancer, so it is recommended that you quit if you smoke.

Get help to stop smoking or read more information about treatments to help quit smoking.

Stress

Stress is thought to contribute to a flare-up of symptoms in some people. It may help to try stress relieving techniques such as deep breathing and muscle relaxation.

Read more information about stress and ways to relieve stress.

Exercise

Regular exercise may help to reduce stress and improve your physical and mental health.

Some simple stretching exercises may also help to reduce symptoms.

Read more about the benefits of exercise and a wide range of information on health and fitness.

Diet

There is currently no scientific evidence that changes to your diet will benefit interstitial cystitis, although some people believe eliminating certain food or drinks can improve symptoms.

Speak to your doctor before making any changes to your diet, as it is important to maintain a healthy, balanced diet.

Treating interstitial cystitis

There is no single treatment that is effective for every person with interstitial cystitis. As the symptoms can vary between individuals, you may need to try several treatments to find one that works for you.

It is important to discuss the options with your doctor first to help decide which treatments may benefit you.

Treatment can include:

  • physiotherapy – this can help relieve any pelvic pain caused by muscles or surrounding tissue
  • painkillers, such as aspirin and ibuprofen - however some people find these actually make their symptoms worse
  • certain antidepressants – these may reduce pain and improve other symptoms
  • certain antihistamines – these may reduce the frequency of needing to urinate and improve other symptoms
  • bladder distension (where the bladder is filled with water to increase its volume) – this may help to temporarily relieve symptoms within a week or two after the procedure
  • bladder instillation (where the bladder is filled with a solution that includes medication to reduce inflammation of the bladder walls) – this may help to temporarily relieve symptoms within three to four weeks after the procedure
  • transcutaneous electrical nerve stimulation – where mild electric pulses are used to block or reduce pain signals going to the spinal cord and brain

Surgery

If other treatments haven't worked, surgery may be an option. However, surgery is rarely used to treat interstitial cystitis.

Surgical options may include:

  • treating Hunner's ulcers with electricity or lasers (fulguration)
  • removing Hunner's ulcers (resection)
  • making the bladder larger using part of the small intestine (augmentation) – this usually includes removing any inflamed areas of the bladder
  • in very rare cases, bladder removal

Surgery is rarely used and the potential risks and benefits should be discussed with a surgeon before making a decision.

Painful bladder syndrome (PBS)

Some GPs may use the term "painful bladder syndrome" (PBS) to describe a condition that causes pain but doesn't meet the criteria to be diagnosed as interstitial cystitis.

Page last reviewed: 07/11/2013

Next review due: 07/11/2015