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Interstitial Cystitis/Painful Bladder Syndrome

Images illustrate an infected (left) and a normal (right) bladder.

About Painful Bladder Syndrome/Interstitial Cystitis

Interstitial Cystitis (IC) is a chronic inflammation of the bladder wall, which can also be diagnosed as Painful Bladder Syndrome (PBS). The cause of PBS/IC is not yet known, research continues to find the cause. Indications suggest the condition could be due to a defective bladder lining, or an autoimmune disorder. PBS/IC may resemble a bacterial bladder infection, however short term antibiotics are not effective.

How common is PBS/IC?

There is an estimated 400,000 people in UK with PBS/IC, of whom approximately 90% are females and 10% are males.

What are the main symptoms of PBS/IC?

Patients may experience some or all of the following symptoms:

  • FREQUENCY – Day and/or night frequency of urination.
  • URGENCY – The sensation of having to urinate immediately may also be accompanied by pain, pressure or spasms.
  • PAIN – Can be in the abdominal, urethral or vaginal area. Pain is also frequently associated with sexual intercourse.

How can PBS/IC affect an individual’s life?

Many PBS/IC patients find that their life revolves around knowing where the nearest toilet is. Therefore, any trip away from home may require thought and planning. Some severe sufferers of PBS/IC can find themselves virtually housebound, which can lead to other problems such as social isolation and depression. Severe tiredness can also occur if the sufferer has to get up repeatedly during the night.   

Bladder issues can be seen as ‘socially unacceptable’ conditions, which are not often discussed in public. Some may feel isolated because of this.

Some may also be in constant pain which can affect relationships and work.

A large number of sufferers find that certain foods or drinks, and even clothing can aggravate their condition.

How is PBS/IC diagnosed?

This is usually via elimination or diagnostic tests such as Urodynamics or Cystoscopy. It can take time to obtain a correct diagnosis as symptoms of PBS/IC can be similar to other conditions for example, Overactive Bladder or Bacterial Cystitis/(UTI). Progress has been made by the COB Foundation in raising awareness of PBS/IC and the importance of finding the correct treatment for the patient.

Coping with PBS/IC

It is important to gain support from your GP and urologist to work together at finding the correct treatment for your symptoms. Learn to manage your flares (bad days) with self help and medication.  Reaching out to others who understand what you are experiencing can be of great benefit. There are useful tips to help you, examples include: a change in lifestyle, relaxation, diet, exercise, clothing and planned travel, all which can help enable you to live with PBS/IC.

How can COB help you, if you join us?

The COB Foundation can provide PBS/IC patients with a wealth of information, for example:

  • Members Magazine “Your Bladder Health,” published 3 times per year.  
  • PBS/IC Handbook – an excellent booklet written to provide practical help and advice.
  • Telephone Advice Line – 0121 702 0820
  • Comprehensive Resources – fact sheets, DVDs, lending library, Can’t Wait Cards and much more.
  • Message Forums– exchange personal experiences of bladder illness with others.
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