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Bladder pain syndrome

What is bladder pain syndrome? Dr Shona Brown explains

Bladder pain syndrome (also known as interstitial cystitis and painful bladder syndrome) results in pelvic pain, often made worse when the bladder is full. It may mean people have to empty their bladder very often and wake during the night to go to the toilet. They can experience the strong urge to empty the bladder, often with significant discomfort or pain, and find it difficult to wait to go to the toilet. It mainly affects women.
The symptoms are similar to a urinary tract infection (cystitis) but there is no infection found in the urine. Often people have lots of tests of their bladder. Sometimes they then feel that they are not believed regarding the ongoing pain, or that doctors think the pain is ‘in their head’. We know that bladder pain syndrome is not imagined and that the ongoing pain symptoms are very real and can be distressing to try to live with.

How is bladder pain syndrome identified?

Doctors make the diagnosis based on asking questions about the symptoms and carrying out tests on the bladder. Urologists and urogynaecologists are the medical professionals working in this area. Investigations aim to find out if there is a problem with the bladder that can be treated medically. Bladder diaries, cystoscopy and urodynamics are useful investigations to identify bladder pain syndrome. These tests are also important to ensure there are no other problems with your bladder that could be causing your symptoms.

Why do I have it?

The symptoms can begin after repeated urinary tract infections, after an operation or after childbirth. Sometimes it starts seemingly ‘out of the blue’ with no obvious trigger. It can get worse over time or start suddenly. Scientists are still trying to find out why some people develop this. We do know that it is linked to a problem with the pain system.

We need pain signals to be sent when there is damage to our body requiring our attention. However the pain system can go wrong. Pain does not necessarily mean that there is damage to the bladder. The problem can be that the pain nerve fibres in the bladder area have become too sensitive and send pain signals.
This is a nervous system problem, so it does not show up on blood tests, scans, cystoscopy or other medical tests. It does not mean there is nothing wrong, but helps determine that it is a problem with pain signalling in the bladder area. The Pain Concern leaflet Neuropathic pain gives you further information regarding the science of the pain system.

What can help?

Learning more about the condition

People find it helpful to learn more about bladder pain syndrome. The International Painful Bladder Foundation website http://www.painful-bladder.org/ provides helpful information and links.

Diet

Certain food and drink may make the pain worse. It can help to record a diary for a week or two noting how strong the pain is (for example on a 0-10 scale if 0= no pain and 10= the worst pain) and what you have had to eat and drink.

Stress management

Stress is not a cause of bladder pain syndrome but when we are stressed our pelvic floor muscles are often tense and this has been shown to be linked to pelvic pain. The chemicals that are released by our bodies when we are stressed (adrenaline and cortisol) have an impact on the nervous system. They turn up the volume of pain signals. Living with bladder pain is life altering and this can be stressful. It can then help to manage stress levels. Practising a relaxation technique like progressive muscle relaxation, soothing rhythm breathing, guided imagery or mindfulness meditation can be helpful. The Pain Concern leaflet Stress, Pain and Relaxation gives you more information about stress management.

Pelvic floor relaxation and physiotherapy

Some have found it helpful to see a physiotherapist to have pelvic floor muscle assessment and develop their skills in relaxing their pelvic floor muscles.

Medical Treatments

There is not one medicine that helps everyone with bladder pain syndrome. Medication can help to lessen the symptoms. Anti-inflammatory medicines can help, as can antispasmodics. There are medicines aiming to act on the nervous system and to damp down the oversensitive nerve fibres. Bladder instillations can be helpful. The medical professionals involved in your care can give you advice on medical treatments.

Adjusting to a new way of life

The duration of pain varies between people. For some they may experience pain for a couple of months and it then resolves. Others continue to experience some pain but it is much less intense. Bladder pain syndrome may mean adapting to a new way of life taking the symptoms of the condition into consideration. Relationships, work and hobbies may all be affected. Coming to terms with these changes and making adjustments to ensure that life can still be enjoyed is a process. If you are struggling with this please seek support from your GP and request referral to a pain management service.

Further information and help

The International Painful Bladder Foundation website http://www.painful-bladder.org/
Bladder Health UK http://bladderhealthuk.org/
Pelvic Pain Support Network http://www.pelvicpain.org.uk/

Dr Shona Brown is clinical psychologist with EXPPECT, NHS Lothian’s multidisciplinary pelvic pain service.

Long-term pelvic pain

An award from The Women’s Fund for Scotland has allowed us to produce the
following resources:

• Airing Pain programme 87: Vulvodynia radio programme 87 and accompanying leaflet, Vulval Pain
• Airing Pain programme 88: What to EXPPECT When You’re in Pelvic Pain and accompanying leaflet, Bladder Pain Syndrome.

Bladder Pain Syndrome © Shona Brown. All rights Reserved. January 2018. To be reviewed January 2021.