What is an IC flare?

An ‘Interstitial Cystitis (IC) flare’ is an unpredictable beast that attacks at the most inopportune time. It strikes like a freight train traveling at high speed and knocks you to your knees. Even in the prime of your life or at the peak of your fitness, it can derail you for days, weeks, and even years. Even if you follow all of the recommended protocols for keeping symptoms under control, it can still strike you, at any time.

IC Flare Train

Six weeks ago, out of absolutely nowhere, the ‘IC flare train’ hit me. I went to bed the night before, totally symptom free. At 6 am my husband opened the bathroom door to find tears of sheer agony rolling down my face. I had been there since 3 am, praying the pain would stop. He had not seen me crying like that in a long time. In fact, my pain had been so well controlled I didn’t even know where my prescription pain killers were. I rummaged and found them buried in my medicine cabinet. I took one pill. It said ‘one every six hours’. It helped for the first hour and then absolutely nothing. The pain got worse. Eventually, I uttered words I rarely ever say: “I think I need to go to the hospital. I can’t take the pain much more. I need it to stop.”

BOOM. It hits you…

This is the bizarre nature of IC. You can go from 0 to 100 on a pain scale overnight. Moreover, you can go from 0 to 100 in a matter of minutes. In a flash, it can wipe the smile off your face and turn your life upside down. Sometimes, it can be associated with a stressful event, hormone fluctuations, medications or certain foods. Other times, there is no apparent explanation. No rhyme. No reason. This impulsive, volatile pattern makes living with IC all the more difficult. You can plan, plan, plan and be ready to go. Then, BOOM. It hits you, and you are going nowhere. For example, tonight, there is an empty seat on a flight from Los Angeles, CA to Dayton, OH with my name on it. I was supposed to be sitting beside my husband holding his hand going on vacation, but instead I’m sitting at home, holding an ice pack on my bladder. It is extremely frustrating. It is a frustration which I know will only add fuel to the bladder fire. So I need to let it go. For whatever reason, I need to accept it was not meant to be. I need to embrace the IC flare and find a reason for my suffering, rather than a resentment.

Similar to a safety flare on a boat, we can think of an IC flare as the body sending out a distress signal. It is intended to summon help. With an estimated 10 million men and women in the United States alone suffering from IC, “someone’s out there sending out flares” (‘The Script: Flares). However, like the flares on a boat, they are only useful if someone sees them and takes action.

We cannot afford to ignore the signals any longer. We need to rescue the IC Warriors who are signaling for help. Help to ease their pain. Help to end their suffering. Help to find a cure.

Please share our distress signal.

Fiona McKiernan, MS, RD

IC Warrior



Auteur: Fiona McKiernan
My name is Fiona McKiernan and on September 1st, 2015 I proclaimed to the world that I am an “IC Warrior”.

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Elizabeth Perkins
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Elizabeth Perkins

Its been one year since my diagnoses. Im still lost

Janna Keney
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I’ve been diagnosed for 4 years now, had the symptoms for 20 plus years, just was never given a diagnosis.

Jayleen Del Rio
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Jayleen Del Rio

I’ve had IC 6 years now, so devastating to my life. Changes everything…most of my flare ups only last up to 3 days but there are times when I have been thoroughly overwhelmed with intense pain and I don’t want to live like this. I am house bound and rarely go out because I usually will get a flare, strong emotions either sad or happy can bring on a flare. I’m really good about following a strict IC diet which helps, last night I had an egg salad sandwich with mayonnaise and it didn’t bother my bladder, yay! Now I… Lees verder »

Laura Paul
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Laura Paul

I’ve been diagnosed for about 5 years but have had symptoms for my entire life. It was very validating to finally put a name to what was happening to me. Flares come and go. I was pretty well controlled until I went through metapause last year and my symptoms have gotten worse and I now have more spasms and pelvic floor disfunction. It would be so nice if someone would find a cure soon.

Vivany
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Vivany

How does one know they have IC? For the past 4-5 years, I have add almost undiscribable pain & the constant feeling of having to urinate, feeling like my bladder is completely full…..but it isnt. I can spend hours in the bathroom trying to evacuate my bladder & figure out why I am in pain. UTI & bladder infection have been ruled out evety time.