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Painful Bladder Syndrome/Interstitial Cystitis

What is PBS/IC?

PBS/IC is a painful condition of the bladder, caused by the combination of two separate conditions: painful bladder syndrome and interstitial cystitis.

Painful bladder syndrome (PBS) is described as pain over the pubic area, usually occurring as the bladder fills with urine. This is accompanied by other symptoms,such as a need to visit the toilet more often than normal, both during the day and at night.

Interstitial cystitis (IC) is inflammation of the bladder. This may be present for a long time, and can be difficult to treat. It may also be associated with other problems.

How is PBS/IC caused?

The cause of PBS/IC is still unknown, but there may be many different causes including:

• A weakness in the protective layer inside the bladder. This layer is called the glycosaminoglycan (GAG) layer and it protects the bladder from the urine. If it becomes leaky, the urine damages the bladder and causes the symptoms of PBS/IC
• Infection with an unknown agent e.g. a slow-growing virus
• Production of a toxic substance in the urine
• Problems with the normal function of the pelvic floor
• An autoimmune disorder when the body attacks its own healthy cells by mistake
• Damage to the bladder itself or to the spinal cord in this region, for example as the result of an accident

What are the symptoms?

The typical symptoms of PBS/IC are pain in the bladder, urinary frequency (going more often) and urinary urgency (needing to go quickly). Symptoms can improve or worsen at different times.

Specific bladder pain associated with the condition will usually be felt as increased pain when the bladder is filling, followed by temporary relief of pain by emptying the bladder. Patients may experience this as a feeling of pressure, discomfort or heaviness, or as a burning or stabbing sensation. The pain can also be brought on or made worse by sexual intercourse in both men and women.

Urinary frequency - An individual with a normal, healthy bladder might expect to urinate around seven or eight times per day. A person with PBS/IC may need to empty the bladder much more often (up to several times an hour), simply to relieve the pain. In severe cases, patients may need to urinate up to 60 times a day; that is two or three times every hour. Patients may also need to urinate several times during the night.

Urinary urgency - Patients may feel a pressing need to go to the toilet due to increasing pain or discomfort that becomes impossible to tolerate. Some may also feel generally unwell and nauseous at the same time.

How does PBS/IC affect patients' lives?

PBS/IC is more than just a set of symptoms. It may mean a change in lifestyle. For those with mild symptoms there may not be much change, but for those with severe symptoms it can have a serious effect on their quality of life. Due to the pain, increased frequency and urgency patients may:

• Find it affects their social life because of their need to be near the toilet
• May have to change their job to allow easy access to a toilet
• Suffer physically and psychologically due to a lack of sleep
• Experience problems in their family life as the disease affects the whole family
• Experience difficulties with intimate relationships, unless they have a very understanding partner

In June and July 2009, the Cystitis and Overactive Bladder (COB) Foundation conducted a survey on it's PBS/IC members. The survey was conducted by post and achieved 830 respondents, making it the largest ever survey of its kind in the UK. The survey found the following effects on patients lives:

• 61% of respondents said that the worst thing about living with PBS/IC was the pain
• 94% of respondents have suffered from depression at some point due to their PBS/IC. Furthermore, nearly half of total respondents said they frequently suffer from depression due to their condition
• 82% said PBS/IC has an effect on their general mood
• 95% have suffered from sleep problems at some point due to their PBS/IC with 69% regularly or severely suffering from sleep deprivation due to their condition
• 69% have experienced problems with intimacy with their partner due to their PBS/IC with 51% of total respondents regularly or severely suffering intimacy problems
• 80% said PBS/IC has an effect on their social life and 84% said it affects their travel / holiday plans

How is PBS/IC diagnosed?

The diagnosis of PBS/IC is difficult for a number of reasons. Historically, very limited criteria were used to diagnose the disease. However this missed many patients with the condition, and a lot of research is being done to improve the diagnosis of the disease.

At present, the diagnosis of PBS/IC is based on:

• Symptoms such as pain, urgency, and frequency, typically lasting for more than three months.
• Absence of any other identifiable infection, disease or disorder that may cause the symptoms.

It is usual for patients to be referred by their GP to a Consultant Urologist or Urogynaecologist to confirm the diagnosis and to start treatment.

What are the treatment options?

No cure has been found for PBS/IC but there are many different treatment options which can help. People with PBS/IC often respond differently to the various treatments, and it can take time to find something that is suitable for each individual.

Treatment generally begins with dietary changes, physical exercise and bladder training, and oral medication.

It is important to stay optimistic and to work with your doctors and specialists to find the right treatment for you. It is advisable to talk to your specialist to find out more about the available treatments.

Dietary changes

The effect of different foods can vary from person to person .Some common foods that can trigger PBS/IC symptom flares include:

• Alcohol
• Citrus fruit
• Fizzy drinks
• Tomatoes
• Food or drink containing caffeine
• Spicy food

Many patients find that by cutting out, or even reducing these foods, symptoms can improve.

Other treatments

Many patients will benefit from treatment given directly into the bladder (intravesical therapies). These involve putting a sterile solution directly into the bladder through a urinary catheter (tube). This helps to target the treatment directly to the problem area (the lining of the bladder). Some of these treatments help to repair the protective lining of the bladder, and therefore address the cause of the disease rather than just the symptoms.

Further support for patients

Getting the support of other people who know about the disease or have suffered themselves can be a great source of strength. The Cystitis & Overactive Bladder Foundation (COB) may be able to help. To contact COB visit www.cobfoundation.org or telephone 0121 476 1222.