Interstitial Cystitis/Painful Bladder Syndrome

Interstitial Cystitis/Painful Bladder Syndrome


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

About Bladder Pain Syndrome/Interstitial Cystitis

Interstitial Cystitis (IC) is a chronic inflammation of the bladder wall, which can also be diagnosed as Bladder PainSyndrome (BPS). The cause of BPS/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. BPS/IC may resemble a bacterial bladder infection, however short term antibiotics are not effective.

How common is PBS/IC?

BPS /IC is a chronic condition with unknown aetiology  (cause of the disease)  As the definition of BPS/IC has evolved it is seen now as a diagnosis of exclusion with no definitive diagnostic test; hence it is difficult to estimate prevalence, which can be dependant on whether symptoms are clinician assigned or patient reported. We know from NHS Digital that in 204/15 (last available stats) that there were over 330,000 Patient Episodes (Admissions to Hospital) of Urinary related problems including I/C.                   

What are the main symptoms of BPS/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 BPS/IC affect an individual's life?

Many BPS/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 BPS/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 BPS/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 BPS/IC can be similar to other conditions for example, Overactive Bladder or Bacterial Cystitis/(UTI). Progress has been made by BHUK in raising awareness of BPS/IC and the importance of finding the correct treatment for the patient.

Coping with BPS/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 BPS/IC.

How can BHUK help you, if you join us?

Bladder Health UK can provide BPS/IC patients with a wealth of information, for example:

  • Members Magazine “Your Bladder Health,” published 3 times per year.  
  • BPS/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.
  • Social Media sites including Facebook @BladderHealthUK and Twitter #bladdersupport

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