Darleen O’Neill wants nothing more than to dine out with her friends and not suffer for it afterwards. No, she’s not allergic to nuts or afraid of food poisoning. She has interstitial cystitis or non-bacterial cystitis. Painful privates, some people call it. Not exactly something you want to talk about in public, over the dinner table or in mixed company.

However, awareness about IC is very important because it affects the lives of countless women all over the world. Interstitial cystitis is known as an immune system breakdown disorder because it usually appears when immunity has been compromised.

In IC, the space between the bladder lining and the bladder muscle is inflamed leading to often severe pain. Cracks in the bladder wall allow urine to irritate bladder tissue leading to a breakdown in the lining of the bladder.

In Prince George there’s a support group for IC sufferers who daily face the challenges of having to cope with chronic pain and strict dietary restrictions. They share their own stories, IC information, the latest research and health care tips.

“There are so many things we can’t eat,” explains O’Neill. “Nothing with caffeine, alcohol, MSG, sulphites, no vinegar, lemon or lime, no hot spices, no fruit (except pears or watermelon), no chocolate and very little sugar. Most of the food in restaurants has too many additives for us – that’s why meals at home are made from scratch. But it’s nice to go out for meals and we would like to see IC-friendly items on the menu.”

She and other group members want to challenge Prince George restaurants to come up with dishes that are suitable for people with IC diet needs. But getting restaurateurs on board is only half the battle. Doctors, employers, family members, friends and the general public need to have a better understanding (and often more compassion) for people who have IC, says O’Neill.

“This is a condition that many doctors just don’t understand. We often hear ‘there is no cure, you will just have to learn to live with it.’ We try to carry on with our lives. Some of us hold down jobs. If we have to take time off because of our pain or because we’re on so much medication we can’t function, our supervisors aren’t always sympathetic – after all, we don’t look sick.”

Even doing simple, everyday tasks like driving can be bad.

“Driving down Prince George streets and highways, IC patients can feel every pot hole and every storm drain they go over, in their bladders. For us, it’s not just about the worry for our vehicles. It is incredible pain.”

It can also affect our loved ones, she said.

“Family time and relationships are also difficult to maintain. Again we do not have something like a broken leg that can mend. We have good days and bad days. Family members or partners get tired of hearing about our pain or how we can’t go boating, etc. Many intimate relationships do not last.”

O’Neill says most patients have tried alternative medicine to relieve their symptoms.

“They’ve usually tried everything out there from acupuncture, naturopathic medicine, homeopathic medicine, massage therapy, chiropractic treatment, meditation, herbs, vitamins, kinesiology. Anything we hear about, we try with the hope that one day we will hit upon a cure or even an improvement.”

When the condition persists, some sufferers have been known to have thoughts of suicide, she said.

“When our hope is exhausted, when our doctors give up on us and our family, partners and friends are fed up, that’s when IC sufferers think about suicide. That’s why we have a support group of people who understand.”

Prevention is always the best medicine and with IC that is also the case, she says.

“There’s no known cure but it helps to keep the immune system strong and to practise relaxation techniques such as meditation.

“There is also a good drug on the market called Elmiron – it is expensive and takes three to six months before you know if it’s going to work (it doesn’t work for everyone) – but it can help to rebuild the bladder lining,” said O’Neill.

Their local support group used to meet at PGRH but now they are looking for a new meeting place in central Prince George.

This week is IC Awareness Week. For more information about interstitial cystitis, visit the website at icanews@ichelp.org.