Experiences with

Interstitial cystitis

Symptoms of BPS (interstitial cystitis)

The main symptoms of BPS (interstitial cystitis) include:

• intense pelvic pain (felt over your lower tummy)
• sudden strong urges to pee
• needing to pee more often than usual
• pain in your lower tummy when your bladder is filling up, which is relieved when you pee
• waking up several times during the night to pee

Other symptoms can include finding it difficult to pee, urinary incontinence and blood in your urine (haematuria).

These symptoms can sometimes be caused by other conditions, such as cancer of the bladder. This is why you'll need a range of tests to rule out other possible causes before BPS (interstitial cystitis) can be diagnosed.

Ask for an urgent GP appointment or call 111 if you have blood in your urine and pain in your lower tummy.

Blood in your pee may be bright pink, red or dark brown.

What causes interstitial cystitis?

The exact cause of BPS (interstitial cystitis) is not clear. However, there are several ideas about what might cause it.

These include:

• damage to the bladder lining, which may mean pee can irritate the bladder and surrounding nerves
• a problem with the pelvic floor muscles used to control peeing
• your immune system causing an inflammatory reaction

Some people who have been diagnosed with BPS (interstitial cystitis), may have a long-term (chronic) urinary infection (UTI) in the bladder, which has not been picked up by current urine tests.

BPS (interstitial cystitis) may also be associated with chronic conditions such as fibromyalgia, myalgic encephalomyelitis or chronic fatigue syndrome (ME/CFS) and irritable bowel syndrome (IBS).

How is BPS (interstitial cystitis) diagnosed?

There is no single test to diagnose BPS (interstitial cystitis). You may have several tests to exclude other causes of your symptoms before a diagnosis can be confirmed.

The tests offered may include:

• cystoscopy – a procedure to look inside your bladder using a thin camera called a cystoscope
• urine tests
• ultrasound, MRI scan or CT scan of the urinary tract and sometimes of the kidneys too
• urodynamics – a range of tests to check the function of your bladder and urethra
• vaginal swabs

Ask your doctor to explain what tests you are being offered and what they're for.

Treatments for BPS (interstitial cystitis)

When you have been diagnosed by a specialist as having BPS (interstitial cystitis), there are several treatments that may help.

No single treatment works for everyone, and there is no conclusive evidence they work. You may need to try several treatments to find one that works for you.

Ask your hospital specialist to explain the treatments offered to you and why.

Medicines

Tablets or capsules may be used to treat people with BPS (interstitial cystitis).

These include:

• over-the-counter painkillers – such as paracetamol and ibuprofen
• medicines for nerve pain – such as amitriptyline, gabapentin and pregabalin
• tolterodine, solifenacin or mirabegron – these can reduce the urgency to pee
• a prescription medicine that may help by blocking the effect of a substance called histamine in the bladder
• pentosan polysulfate sodium (Elmiron) – this may reduce pain (this can only be prescribed by a specialist as it's only suitable for some people)

Bladder instillations

Some medicines can also be passed directly into the bladder using a thin tube called a catheter.

These are known as intravesical medicines or bladder instillations.

Examples of intravesical medicines include:

• lignocaine - a local anaesthetic that numbs the bladder,
• a mixture of compounds including steroids, sodium bicarbonate and heparin are used
• hyaluronic acid or chondroitin sulphate – this may help restore the bladder lining
• antibiotics alone or combined with a local anaesthetic and steroid – this can calm inflammation and reduce infection

As with oral medicines, the evidence is not conclusive for bladder instillations. Ask your hospital specialist to explain the different options.

Supportive therapies and treatments

Some people may also find the following therapies and supportive treatments helpful:

• physiotherapy – a specialist pelvic floor physiotherapist can help you relax your muscles to ease pain.
• acupuncture – may help with pain relief
• talking therapies and counselling – to help you cope with your symptoms and their impact on your life
• transcutaneous electrical nerve stimulation (TENS) – where a small battery-operated device is used to relieve pain by sending electrical impulses into your body
• pain management – ask the GP to refer you to a pain specialist

Surgery and procedures

Surgery and other procedures may be recommended if you have clear abnormal areas (lesions) in your bladder or other treatments do not work.

Procedures that may be carried out include:

• cauterisation – ulcers inside the bladder are sealed using an electrical current or laser
• bladder distension – the bladder is stretched with fluid, which can aid diagnosis and may temporarily relieve symptoms
• botulinum toxin injections (such as Botox) – injected directly into your bladder wall to temporarily relieve symptoms of frequent peeing and pain.
• neuromodulation – an implant that stimulates your nerves with electricity is placed in your body to relieve pain and reduce sudden urges to pee

In very rare cases, and only as a last resort, it may be necessary to remove the bladder completely (cystectomy).

If this is done, your surgeon may need to create an alternative way for pee to leave your body.

Things you can do to help BPS (interstitial cystitis)

Things that may help improve your symptoms include:

• reducing stress – try exercise, warm baths and mindfulness-based meditation techniques
• making sure you are hydrated regularly throughout the day
• keeping a food diary – if you notice certain foods or drinks (like citrus fruits and alcohol) make symptoms worse, avoid them, but ask for medical advice first
• stopping smoking – the chemicals in cigarettes can irritate your bladder

Symptoms of bladder pain syndrome (BPS) include intense pain over your lower tummy, sudden urges to pee and needing to pee more often than usual.

The cause of bladder pain syndrome (BPS) is unclear. Some people may have a long-lasting urinary tract infection (UTI) that tests have not found.

You may have several tests, including a cystoscopy, before doctors can diagnose bladder pain syndrome (BPS).

You may need to try several treatments for bladder pain syndrome (BPS). These include medicines, specialist physiotherapy and surgery.

Avoiding certain foods and drinks, reducing stress and staying hydrated can help with symptoms of bladder pain syndrome (BPS).

Related links

Bladder pain syndrome (interstitial cystitis)

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