Many of us have experienced the agonising pain and the urgent need to rush to the bathroom that comes with having a bladder infection.
But few of us know what it’s like to live with one that never goes away. This is life for people with interstitial cystitis.
“It’s a complex and misunderstood condition,” says Eva Simons of the Irish Interstitial Cystitis Support Network.
“It’s poorly named too. When you tell people you have it, they say: ‘Oh yeah, I’ve had that. Drink cranberry juice and it will help.’
“They don’t realise that it’s nothing like the urinary tract infection (UTI) they had and that drinking cranberry juice is one of the worst things you can do.”
Cystitis refers to inflammation of the bladder and is usually caused by a urinary tract infection.
Its symptoms are a constant urge to pee; a painful, burning sensation when urinating; dark, cloudy or smelly urine; pain in the lower abdomen; and generally feeling unwell. It’s a common problem and easily cured with antibiotics.
Interstitial cystitis starts off much the same.
“You have similar symptoms and think you have a bacterial infection,” says Eva.
“But then the cultures come back negative for bacteria and white blood cell counts.”
This is because interstitial cystitis is a more chronic condition. There’s no obvious infection. Antibiotics don’t work. The pelvic pain is much more intense.
Just as importantly, many GPs haven’t heard of it.
“Some still treat it with antibiotics,” says Eva.
“I know lots of people who were put on multiple courses of antibiotics with no improvement. It was only when my GP saw me re-presenting with the same symptoms over and over again that he realised something was wrong.
“I was lucky he had heard of it. It’s not always the case.”
The cause of the condition is little understood. One theory is that it may be linked to a defect or failure in the bladder’s protective glycosaminoglycan layer, which increases the bladder wall permeability and allows toxic substances through, leading to chronic inflammation.
Other theories include pelvic floor muscle problems, the immune system mistakenly attacking the bladder, or that it’s an allergic reaction.
Current treatments range from taking antihistamines and vitamin B12 supplements to physiotherapy targeting the pelvic floor, and bladder instillations where the bladder is filled with medicated liquids.
Lifestyle changes can also play a role: “Everyone is different but many people find that a low-acidity diet helps,” says Eva. “This means avoiding fruit and trigger foods such as alcohol, caffeine, chocolate, tomatoes and spicy foods.”
The condition can be difficult to live with: “People are out there suffering in silence,” says Eva. They have no quality of life because they have to go to the toilet up to 60 times a day. This means they can never be far from a bathroom. The pain when they need to pee is excruciating and life can become very lonely and depressing.”
The Irish Interstitial Cystitis Support Network was set up to help these people, to show them they aren’t alone and to offer them the latest news on possible treatments.
You can find out more about them on their Facebook page and you can find more general information about interstitial cystitis on www.icawareness.org.