Interstitial Cystitis/Painful Bladder Syndrome
About Interstitial Cystitis/Painful Bladder Syndrome
Interstitial Cystitis (IC) is a chronic inflammation of the bladder wall, which can also be diagnosed as Painful Bladder Syndrome (PBS) or Bladder Pain Syndrome (BPS). The cause of IC/PBS 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. IC/PBS may resemble a bacterial bladder infection, however short term antibiotics are not effective.
How common is IC/PBS?
There is an estimated 400,000 people in UK with IC/PBS, of whom 90% are females and 10% are males.
What are the main symptoms of IC/PBS?
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 IC/PBS affect an individual's life?
Many IC/PBS 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 IC/PBS 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 IC/PBS 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 IC/PBS can be similar to other conditions for example, Overactive Bladder or Bacterial Cystitis. Progress has been made by the COB Foundation in raising awareness of IC/PBS and the importance of finding the correct treatment for the patient.
Coping with IC/PBS
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 IC/PBS.
How can COB help you, if you join us?
The COB Foundation can provide IC/PBS patients with a wealth of information, for example:
- Members Magazine “A Wee Ray Of Hope,” published 3 times per year.
- IC/PBS 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.
