Imagine for a moment that you really, really have to pee. You run to the bathroom, then comes the unmistakable relief. It’s a feeling so gratifying that the same part of the brain that is activated when we feel love is activated when we go the washroom. Now, imagine for a moment that you never get that relief, only discomfort. That’s what happened to me.
I’ve weaved in and out of clinics and have had countless cystoscopies – a rather uncomfortable medical procedure where a thin tube with a camera at the tip is inserted through the urethra to examine the bladder. Every time yielded a different result: nothing; blotches of yellow; hardening of the wall. As well, every time the urine results came back the same: no bacterium – which is indicative of a UTI. I’ve had instillations, where I lie on beds and nurses tell me time and again, “You’re too young for this,” before they pump me full of a medical cocktail to give me temporary relief.
That was in 2012. I was 24. What at first was believed to a UTI, has progressed into a very different diagnosis: interstitial cystitis (IC).
IC is a syndrome of the bladder that manifests in pain, urgency – feeling like you have to go, even with an empty bladder – and frequency. It’s essentially a never-ending UTI, in the absence of a bacterial infection. There’s no cure and, for many, nary a treatment in sight. It’s a migraine of the bladder, as a friend puts it.
Little is known about IC, including what causes it. Of the four to 12 million people believed to be IC sufferers around the world, 90 per cent are women. (In the United States, IC afflicts approximately 3 per cent to 6 per cent of all women.)
IC drove me crazy. It dominated my every thought. For others with my condition, it has led them to take their own lives.
Associate professor of psychology, anesthesia, and urology at Queen’s University Dean Tripp researches the mental toll IC has on sufferers. He says the effect of this condition is tremendous. “They catastrophize, when they feel a hint of pain, they get anxiety, and depression, fearing the pain will come back again,” Tripp says.
According to his recent findings, close to 25 per cent of sufferers report suicidal ideation – compared with what was previously believed to be 11 per cent – findings he has taken to this year’s national urology conference in San Francisco. “Think about it, that’s close to one in four. We’re not doing enough. It’s a sin.”
This is a life-altering disease that leads many to leave their jobs, and affects all levels of their life from socializing to intimacy, Tripp says.
There are two recognized subtypes of IC, the more severe being Hunner’s ulcers, which affects 10 per cent of those with the condition. These lesions are distinctive areas of inflammation in the bladder causing severe pain. For the remaining 90 per cent, inflammation and irritation is experienced in the bladder wall.
For some, the only relief from pain comes from emptying the bladder. Reports suggest that many are voiding up to 60 times a day.
“People have even fallen asleep on their toilet,” says Jill Osborne, president of the Interstitial Cystitis Network (ICN), who herself suffers with IC. Osborne says at its worst, it felt as if someone was slicing her bladder with a razor blade, over and over again.
Dr. Kenneth Peters is considered one of the world’s leading IC experts. The Michigan-based urologist says he gets many Canadian patients coming to Beaumont Hospital – equipped with 40 urologists – but the cost is hefty, and for those who can, they pay out of their own pockets. A majority of IC sufferers don’t respond to drugs, but to physical therapy, such as pelvic floor therapy. Peters says that continued research is critical to ensuring patients find some kind of relief.
Inga Legere, who co-chairs the IC Ottawa support group, says the single biggest challenge is getting a diagnosis. The issue is compounded by long wait times to see specialists, which can take up to a year.
Anne (who asked us not to use her surname) also co-chaired the IC support group in Ottawa. She got IC in 1995 and says it took her up to a year to get diagnosed. Tripp says it can take as many as five years for many to receive a diagnosis.
“When I got it, I had no idea what was wrong with me,” Anne says. “The pain felt like I was filled with broken razor blades and glass, I had to void 24 hours a day.”
I know the feeling all too well.
I’ve been on every oral medication to treat over-active bladder syndrome – none of which work.
Acupuncture needles have been strewn across my stomach sending vibrating pulses in the cold basement of an acupuncturist’s private clinic. I’ve had countless treatments, and countless dismissals from the medical community.
I’ve sat in front of doctors who’ve told me to see a psychiatrist. I’ve had one doctor say: “Well, some things like this mean you’ll just have to suffer for the rest of your life.”
Both Anne and Osborne laud one doctor in Canada for his work in IC research: Dr. Curtis Nickel. The Kingston-based urologist is “so good,” Osborne says, that the U.S. government pays him to do research. While he is not currently accepting new patients, Osborne says his clinical trials have been showing positive results.
Despite this one glimmer of hope in Canada, Osborne says the IC community in the country, and especially Ontario, collapsed about 10 years ago.
I get a call from Osborne telling me she wants me to speak to a Toronto mother, Gail Benshabat. Her daughter Lisa, who suffered from IC, took her life just last month because of IC. She was 27.
Osborne hopes that Benshabat will lead a grassroots movement where it has failed in Canada before. Lisa was diagnosed with borderline IC at the age of 10. She had also been to countless doctors. The feeling for Lisa, says her mom, was a full-bladder sensation.
Similar to what I experience, it’s the feeling that no matter if your bladder is empty or full, the feeling always remains that you have to void. “She felt like something was stuck inside her and she just needed to pull it out,” Benshabat says. Benshabat was sure that her daughter was close to finding relief. “She just needed time and patience,” Benshabat says. “She lost both.” Lisa had an appointment to see Peters, but she took her life just shortly before.
Many illnesses are draped in nobility. People are deemed fighters, survivors and conquerors in the face of death and seemingly indestructible pain. But what is noble about being chained to your toilet?
This is not a terminal disease, but an interminable one from which I and others have wished for a foreseeable end.
There is a tendency to poke fun at incontinence. They are our most private moments, and at root, an ultimate measure of our own independence.
We make jokes about how long it’ll be before we’re in diapers, we shun the thoughts of being changed and having to change others; it is the apex of embarrassment; the utter loss of control; the loss of dignity.
I have pleaded for relief from this very simple feeling of urgency, for such a simple feeling that cannot seem to go away. IC is a loyal, albeit unpleasant, companion.
With all these dead-ends, varying treatments, this discomfort is the only constant.
I want to hold on to hope, because hopelessness is the greatest thing I struggle against. I hope that with more people reading this, more attention can be shed on IC and we can advance treatment.Report Typo/Error
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