Interstitial Cystitis

Interstitial cystitis (IC) is a condition where your bladder is extra sensitive and manifests as bladder pain and a frequent need to pee. It’s also called bladder pain syndrome (BPS) or painful bladder syndrome (PBS).

IC can affect anyone, but it mostly affects women. In the UK, up to 400,000 people have IC, with nearly 90% of those being women aged 50 to 69 years. The average age of onset is 40 years.

What is the difference between cystitis and interstitial cystitis?

Cystitis and interstitial cystitis are not the same thing. Cystitis is a bladder infection caused by bacteria, while interstitial cystitis is a chronic condition that causes bladder pain and other urinary symptoms but has no clear cause (including infection).

The symptoms of cystitis and interstitial cystitis are similar, but IC happens on a recurring basis and can be managed with a combination of treatments. Cystitis doesn’t always need medical treatment and can clear up after a few days. However, if you do require treatment, antibiotics are effective.

Common interstitial cystitis symptoms are:

• intense pelvic pain, which is usually felt in your lower tummy
• sudden urge to pee
• needing to pee more often than usual
• lower tummy pain when your bladder is filling, that’s relieved when you pee
• waking up several times in the night to pee

You may also notice that you find it more difficult to pee, experience urinary incontinence, or have blood in your urine, called ‘haematuria’.

These symptoms can be signs of other conditions, including serious things like bladder cancer. So, getting an early interstitial cystitis diagnosis is important to rule out other possible causes.

What are the early signs of interstitial cystitis?

Early signs of interstitial cystitis are persistent pelvic pain or changes in your usual peeing pattern.

If you notice blood in your urine, you should request an urgent appointment with your doctor.

How can you tell the difference between a UTI and interstitial cystitis?

A urinary tract infection (UTI) and interstitial cystitis cause very similar symptoms, but the only way to know which one you have is to have a urine sample analysed. Bacteria cause UTIs, whereas IC doesn’t have an identifiable cause.

You can request a UTI Testcard, an at-home urinary tract infection test to diagnose cystitis.

Interstitial cystitis doesn’t have an obvious cause and doesn’t involve an obvious bladder infection. However, the following are some of the proposed causes:

• damage to the bladder lining
• pelvic floor muscle issues
• your immune system is causing an inflammatory reaction
• an allergy
• a long-term infection that has not been picked up with standard urine analysis tests

What increases your risk of interstitial cystitis?

Although the exact cause of interstitial cystitis is unknown, certain factors are linked to an increased risk, including:

• gender – women are more likely to be affected than men
• age – most people affected are over 30, with the average age of onset being 40 years
• family history – some research suggests IC may run in families with adult female first-degree relatives of people with IC have a 17 times higher risk of developing it themselves compared to the rest of the population
• chronic conditions – IC may be associated with chronic disorders, including irritable bowel syndrome (IBS), chronic fatigue syndrome (CFS), and fibromyalgia

There is no single test to diagnose interstitial cystitis. Instead, you may be offered several tests to exclude other potential causes of your symptoms.

To rule out a UTI, your GP may give you a urine test. With interstitial cystitis, your urine analysis will be normal with no signs of a bacterial infection.

However, standard tests carried out by GPs and hospitals won’t always pick up all types of bladder infection, so you may be prescribed antibiotics to see if they help.

Your doctor may also advise you to:

• keep a food diary and avoid any foods or drinks that make your symptoms worse
• quit smoking because it can make the symptoms worse, with one study finding that 31% of IC patients were smokers

Other tests you may be offered include:

• cystoscopy to look inside your bladder using a think camera called a cystoscope
• ultrasound, MRI scan, or CT scan of the urinary tract and bladder
• urodynamics to assess your bladder and urethra function
• vaginal swabs to rule out STIs or check vaginal or vulval health

There is no cure for interstitial cystitis, but there are several ways it can be managed, ranging from lifestyle changes and medication to physical therapy. Your doctor will discuss possible treatments with you and may even suggest a combination of options to successfully manage the condition.

Medication

Over-the-counter medication

Over-the-counter painkillers, like paracetamol and ibuprofen, may be taken to manage the pain associated with interstitial cystitis. However, you should discuss this with your doctor because they may not be suitable for long-term use.

Prescription medications

There are medications available that can help control the urgency to pee. These are prescription-only medications, so you will need a doctor’s approval to get them. They work by relaxing the muscles around your bladder, so that it can hold more liquid, stopping you from peeing as frequently or as urgently. Examples include:

• tolterodine
• solifenacin
• mirabegron

If you are referred to a specialist, they may prescribe pentosan polysulfate sodium (Elmiron) to reduce IC pain. However, it is not suitable for everyone, so a specialist must determine if it is safe for you to take. Pentosan polysulfate sodium is thought to work by repairing the protective mucus lining in the bladder, which may be damaged in interstitial cystitis patients.