The first story I ever told at The Story Collider’s live show in Brooklyn was about my vagina.
(Believe it or not, they still asked me to join the show as a host and producer after that.)
A condition called interstitial cystitis, or “painful bladder syndrome,” runs in my family, and about three years ago I started experiencing some of its more charming symptoms (I’ll leave it up to you to Google at your own risk), so I ended up at the urologist’s.
“You have a really small urethra,” my urologist, a middle-aged Jewish man, observed cheerfully, as tears formed in the corners of my eyes.
But after that came the really fun part – the official test of whether or not I had interstitial cystitis. This highly scientific procedure essentially amounts to injecting a shit ton of potassium chloride into the patient’s bladder and asking if it hurts.
I believe my exact response was as follows: “Ahahaowwww! Stop! Stop! Ahhh!”
This feedback was duly noted for scientific purposes by a diligent nurse.
“I didn’t even inject all of it,” my urologist complained.
“WELL, DON’T!” I responded. It was the only time in my adult life that I can remember either crying or screaming from sheer physical pain. Every other injury I’d ever sustained since the age of twelve had been satisfied by a single curse word, or in the case that I’m in the presence of my younger family members, by “fuh…udge.” This time there were fireworks in my brain.
The test completed, I was allowed to collect myself, salvage what remained of my dignity, and meet my urologist in his office.
“So you have interstitial cystitis,” he informed me.
Yeah, no shit.
He spent a few moments clicking around on his computer. Who knew what he was doing? Updating his Facebook, bidding on lamps… Don’t mind me. I’ll just be writhing in pain over here.
After what seemed like an eternity, he said, “I’m prescribing you a drug called Elmiron that will reproduce the lining of your bladder. It will probably be six months to a year before it is able to repair your bladder enough to have any effect.”
Whaaaat . . . ?
“But I’ll start feeling a little better before that, right?” I asked hopefully. This is how medicine is supposed to work. You take it, you get better. Preferably within a week.
“Maybe,” he murmured, as if this line of questioning didn’t really interest him. “You also have a condition that often occurs in patients with interstitial cystitis called vulvodynia.”
That’s right, I have two pelvic disorders. They’re like Pringles. You can’t stop after just one.
“It means you’re experiencing vaginal pain without an identifiable cause,” he explained.
“So it basically just means my vagina hurts and no one knows why or what to do about it?”
My doctor cleared his throat before saying, “Yes.”
At this point I began to wonder if vaginas are some vast unknown territory scientists have never dared to explore. How could it be that in 2009 no one knew the answers to these questions? For Christ’s sake, if we can keep Dick Cheney alive, can’t we heal a single broken vagina?
But then my urologist really lowered the boom on me. He told me what IC and vulvodynia really meant for my life: There were four things I’d have to live without for the coming months, possibly much longer – possibly forever.
To hear the rest of the story, tune into this recording of my live story, from our “Pathology” show at the Pacific Standard in January 2011. We’ve re-released it for this issue of the magazine.
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Taking into account both my possession of a vagina and its relative state of disrepair, you can probably guess that the subject of this latest issue of The Story Collider’s magazine, Women and Science, is one that is close to my heart.
Don’t worry – it won’t be all painful vaginas all the time. Though we will have stories examining several aspects of woman’s health, such as today’s hilarious, and harrowing, piece by Lindsey Harris about her monthly Jekyll-and-Hyde struggle as she contends with extreme PMS. But we’ll also be examining women and science from several other angles.
Following off our anniversary celebration of #IAmScience, which featured storytellers such as Science Cheerleaders founder Darlene Cavalier, this issue will include stories about the obstacles facing women who pursue lives in science, including a tale by Scientific American blogger Janet Stemwedel in which she takes on dumbed-down, pink “science kits for girls.” And several of our pieces will examine a certain strange biochemical phenomenon I like to call When a Scientist Loves a Woman, including an illustrated version of Rachel Bitney Wecht’s story of how she met her husband, Story Collider founder Brian Wecht. Frankly, I dare you not to cry.
Erin Barker is the editor of Story Collider magazine, as well as co-producer and co-host of The Story Collider’s monthly stage show. A Moth GrandSLAM champion, she will be performing with Moth On the Road later this month in Ann Arbor and Grand Rapids, Michigan.