What is interstitial cystitis?

Interstitial cystitis may be confused with regular cystitis, and they do share several common symptoms. However, the underlying causes of the 2 conditions are very different, as well as their treatments (antibiotic treatment will not help treat IC).

Regular cystitis is usually caused by a type of urinary tract infection (UTI) that causes the bladder lining to become irritated and inflamed. It usually gets better after a few days on its own. However, for more severe cases, some people might need antibiotics like nitrofurantoin.

Interstitial cystitis is also known as bladder pain syndrome or chronic cystitis. It’s more common if you are aged over 30, and it affects women more than men. The pain can come and go, or be constant. Other symptoms, like needing to pee urgently, may also be constant or can come and go. As a consequence, it can really start to affect your quality of life.

Your symptoms can be managed with lifestyle changes and interstitial cystitis treatment options.

The symptoms of interstitial cystitis can vary from person to person. Some of the most common symptoms of interstitial cystitis include:

• chronic pelvic pain
• lower back pain
• pain in your lower abdomen (stomach) when your bladder is full
• pain which feels better after you pee
• the sudden urge to pee
• frequent peeing
• pain during sexual intercourse
• for men, you may feel pain when you ejaculate

You may also experience ‘triggers’ that cause symptoms such as:

• holding your pee when you need to urinate
• being on your period
• exercising regularly
• stress and anxiety

The causes of interstitial cystitis are still not clear. Recent studies and clinical trials have found that interstitial cystitis can happen due to:

• damage to the tissues that line the inside of your bladder which causes toxins from your urine to leak into other areas
• your immune system attacking your bladder by mistake
• an allergic reaction to the pee that is in your bladder
• an issue with the pelvic floor muscles that surround your bladder
• Chronic health conditions which may potentially be linked to interstitial cystitis include fibromyalgia, or irritable bowel syndrome (IBS).

Interstitial cystitis must be diagnosed by a doctor. At present, there isn’t a specific test for interstitial cystitis diagnosis. Instead, doctors will do a variety of examinations and ask you about your symptoms to work out the possible causes.

Your doctor may diagnose you with interstitial cystitis by:

• reviewing your general medical history including current medication and pre-existing conditions
• discussing your symptoms including how bad the pain is and how often you need to pee
• asking about your current eating habits, how much alcohol you drink, whether or not you smoke
• examining the nerves around your lower abdomen and genital areas including your anus and rectum
• requesting a urine test - this is to rule out any bacterial infections
• referring you for a cystoscopy - where a thin tube with a camera is passed through your urethra to check for growths, tumours (such as potential bladder cancer), or stones
• referring you for an ultrasound, MRI or CT scan
• conducting urodynamics – a range of tests to check the function of your bladder and urethra
• performing vaginal swabs

Interstitial cystitis is known as a chronic condition, and no single treatment works for everyone. At present, there is no known interstitial cystitis cure which will make it go away.

However, interstitial cystitis symptoms can be managed. There are also some interstitial cystitis self-care treatments and behaviours you can follow that can help. You may want to consider a combination of lifestyle changes, supportive therapies and treatments. Additionally, your doctor may refer you to a urologist.

Lifestyle changes

Some lifestyle changes that can improve interstitial cystitis symptoms include:

• planning to take regular breaks to empty your bladder
• taking part in stress-reducing activities like meditation
• trying pelvic floor exercises to strengthen the muscles around your bladder
• taking regular warm baths to soothe the pain
• stopping smoking
• reducing how much water you drink just before bed, but drinking plenty throughout the day
• avoiding acidic foods such as citrus fruits and alcoholic drinks
• keeping a food and drink diary to identify triggers

Interstitial cystitis medication

Your doctor may recommend medication to help treat symptoms of interstitial cystitis, for example:

• painkillers you can access from a pharmacy over the counter, such as paracetamol
• stronger painkillers available on prescription like amitriptyline, gabapentin or pregabalin
• antihistamines, such as loratadine, cetirizine or cimetidine
• medicines that help relax your bladder muscles, such as tolterodine, solifenacin or mirabegron
• medicines to help repair the lining of your bladder and reduce pain, such as pentosan polysulfate sodium (Elmiron) – this requires specialist advice and is not suitable for everyone
• medicines that can be passed into your bladder via a catheter (bladder instillations)

Supportive therapies

The following supportive therapies are thought to be helpful in relieving interstitial cystitis symptoms, although evidence is limited:

• physiotherapy, where a physiotherapist will show you how to relax your pelvic floor muscles and may massage them below your stomach area
• bladder training, to help you learn to hold more pee in your bladder before needing to go to the toilet
• psychological therapy, to help you talk about your symptoms and their impact on your daily life, and support your mental health
• transcutaneous electrical nerve stimulation (TENS) machine, which sends signals to nerves to reduce pain

Some surgical procedures may be carried out if you have clear abnormal areas (lesions) in your bladder, or if other treatments do not work. These may include:

• cauterisation – where ulcers (wounds) inside the bladder are sealed using a laser
• botulinum toxin injections – to relax the bladder wall
• neuromodulation – an implant that stimulates your nerves with electricity
• augmentation – to increase the bladder’s capacity and size

In severe cases, where nothing else works, the bladder may be removed.

You should contact your doctor for a checkup if you think you might have interstitial cystitis. Try to do this as soon as you can to prevent symptoms from developing further or becoming worse.

Your doctor may ask you some questions about your symptoms and examine you closely. You may be referred to a urology specialist (urologist) for further investigation and treatment. For example, they may do a biopsy, where a small sample of tissue is taken and looked at under a microscope. Then they will look at what may be the cause of interstitial cystitis and recommend a treatment.

Receiving an interstitial cystitis diagnosis can be overwhelming. However, studies have shown that, with appropriate treatment, many people with IC can go on to experience long periods without pain and discomfort. There are also many kinds of treatment available, so if the first treatment you try doesn’t resolve the problems, there are other solutions.