What is Painful Bladder Syndrome / Interstitial Cystitis?

Painful Bladder Syndrome (PBS) and Interstitial Cystitis (IC) are poorly understood bladder conditions that cause long-term pelvic pain and problems with urination, and are often difficult to diagnose.

The conditions can have a significant impact on your lifestyle, work, emotional health and relationships, but a number of different treatments can be tried to help relieve the symptoms.

Symptoms range from mild to severe and may include pelvic pain/pressure, urinary frequency and urgency, and getting up at night several times to go to the toilet.

The pain may be worse when your bladder is full and may be temporarily relieved when you go to the toilet. You might also find the pain is worse during periods, episodes of increases stress or after having certain foods or drinks (97 per cent of patients symptoms worsened with trigger foods - Barr, S. (2014) Diagnosis and management of interstitial cystitis: obtset gynecol Clin N am 41 397-407).

What Causes PBS/IC

The exact cause of PBS/IC isn’t clear. Unlike other types of cystitis, there’s no obvious infection in the bladder and antibiotics don’t help. In some people with the condition, the bladder is inflamed, ulcerated, scarred or stiff.

There are several theories about the possible cause of the condition, including:

  • damage to the bladder lining, which may mean urine can irritate the bladder and surrounding muscles and nerves
  • a problem with the pelvic floor muscles (used to control urination)
  • your immune system mistakenly attacking your bladder
  • an allergic reaction
  • It’s also been suggested that Interstitial Cystitis may be a symptom of a more widespread problem, as it’s been associated with conditions such as fibromyalgia, Chronic Fatigue Syndrome (CFS), Irritable Bowel Syndrome (IBS) and endometriosis.

Management of PBS/IC

Unfortunately there’s currently no cure for Interstitial Cystitis and it can be difficult to treat, although a number of treatments can be tried. You may however experience remissions and flairs in symptoms with treatments

No single treatment works for everyone, however, and there is disagreement about how effective some of them are. You may need to try several treatments to find one that works for you.

Lifestyle changes will usually be recommended first. Medications and other therapies may be used if these don’t help, and surgery may be necessary as a last resort.

Lifestyle changes

Lifestyle changes that may help improve your symptoms include:

  • reducing stress – anything that helps you relax, such as exercise or regular warm baths, may help reduce your symptoms
  • avoiding certain foods or drinks (such as tomatoes and alcohol) – if you notice they make your symptoms worse (see common trigger foods list)
  • stopping smoking – the chemicals you breathe in while smoking may irritate your bladder
  • controlling how much you drink – try to reduce the amount you drink before going to bed and avoid alcoholic drinks
  • Pelvic floor therapy – specific to PBS
  • planned toilet breaks/timed voiding – taking regular planned toilet breaks may help stop your bladder becoming too full
  • Tomatoes
  • Caffeine
  • Alcohol
  • Fruit Juices
  • Carbonated drinks
  • Spicy foods
  • Condiments including chilli, horseradish, ketchup, soy sauce, vinegar and Worcester sauce

 

Medication

Tablets or capsules may be used to treat people with PBS/IC including:

  • over-the-counter painkillers, such as paracetamol and ibuprofen. Some people find using products that reduce the acidity of their urine (such as sodium bicarbonate or potassium citrate) reduce their symptoms, but there’s a lack of evidence to suggest they’re effective.
  • over-the-counter antihistamines, such as loratadine and cetirizine
  • stronger painkillers available on prescription, such as amitriptyline, gabapentin and pregabalin
  • Tolterodine, Solifenacin or Mirabegron – these help relax the bladder muscles
  • Cimetidine – a prescription medicine that may help by blocking the effect of a substance called histamine on cells in the bladder
  • These medications will be trialled one at a time before assessing response

Supportive therapies and treatments

  • physiotherapy – massaging the pelvic floor muscles may help reduce any strain on your bladder
  • bladder retraining – where you gradually learn to be able to hold more urine in your bladder before needing to go to the toilet
  • psychological therapy – to help you cope with your symptoms and their impact on your life

Hospital-based treatments

Some medications can be passed directly into the bladder using a thin tube called a catheter. These are known as intra vesical medications or bladder instillations:

  • Bladder distension – where the bladder is stretched with fluid, which can aid diagnosis and may temporarily relieve your symptoms. This is performed under a general anaesthetic
  • Botulinum toxin injections – where a substance called botulinum toxin (such as Botox) is injected directly into your bladder under general anaesthetic to temporarily relieve your symptoms. (Patients are taught how to perform self catheterisation in case of urinary retention post treatment)

Your appointments at Yeovil Hospital

You will be asked to complete a fluid volume chart before your first appointment with the CNS team

Your initial appointment with the urology CNS will be to discuss your individual symptoms and possible triggers and to agree life style changes that may benefit your symptoms. You will be asked to complete a symptom questionnaire and this will be used for future evaluation of you symptoms and how well treatments are working.

Referral to other professionals will be considered at your follow up appointment if no improvement is seen and a discussion about alternative options for treatments

The CNS team will be available for on- going support.

Ref: 19-19-135
Review: not signed off