Bladder pain syndrome (interstitial cystitis)

Bladder pain syndrome is a poorly understood condition where you have pelvic pain and problems peeing.

It's sometimes called interstitial cystitis (IC) or painful bladder syndrome (PBS).

It's difficult to diagnose BPS (interstitial cystitis) as there is no single test that confirms the condition.

Symptoms of BPS (interstitial cystitis)

The main symptoms of BPS (interstitial cystitis) include:

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.

Who gets BPS (interstitial cystitis)

Although BPS (interstitial cystitis) can affect people of all ages, it's much more common in women than men, usually over the age of 30.

The symptoms will often come and go over time. There may be times lasting days, weeks or months where your symptoms improve, followed by flare-ups when they're worse.

You might also find the pain is worse during your period or after having certain foods or drinks.

It can have a big impact on your everyday life, including work, mental health and relationships. But when a diagnosis is confirmed there are different treatments that can help.

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:

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).

When to see a GP

What happens when you see a GP

See a GP if:

Ask for an urgent GP appointment if you have blood in your pee.

BPS (interstitial cystitis) can have similar symptoms to long-term or frequent UTIs, so the GP may give you a urine test to check for a UTI.

Standard urine tests used in GP surgeries and hospitals may not pick up all infections of the bladder. You may be prescribed antibiotics to see if they help.

A GP may also suggest simple treatments such as:

When to ask a GP for referral to a hospital specialist

Treatments from the GP may not always work. If your symptoms keep coming back or do not go away, ask the GP to refer you to a urologist specialising in female urology or a urogynaecologist.

Men may be referred to a urologist.

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:

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

Treatments for BPS (interstitial cystitis)

Medicines

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.

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

These include:

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:

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:

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:

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:

Information:

More information and support

Bladder Health UK has information and forums on BPS (interstitial cystitis) as well as other bladder conditions

Page last reviewed: 18 February 2022
Next review due: 18 February 2025