Six months after braving Urodynamics, I was still on Doxazosin and pursuing a new approach: physical therapy. I first met with a wonderful woman outside of DC whose office was welcoming and yoga studio-like. I desperately wanted her to take care of me but knew that a 90 minute commute each way via Metro (ah, the good old days when I still traveled independently!) was too much. She referred me to a rehab practice in DC where I worked with a woman who definitely knew her stuff but was significantly less nurturing. Under her tutelage I did Kegel after Kegel to strengthen my pelvic floor. I was sent home with a rented device to put inside me while I did my exercises. It was a hard and unpleasant couple of months, but I did come out of if with better bladder control. For a while.

I continued to see the wonderful Dr. Phillips and returned for my second urodynamics study (some girls have all the luck!) the summer of 2012, two years after my first one. There were some unexpected updates. This time I was treated to a rectal probe (yay!) as well as a real-time x-ray type scan that allowed me to watch my bladder filling up like a balloon, which was a bizarre experience. Even before the test, the nurse scanning my void diary (which included 15+ bathroom trips/day) mentioned intermittent self-catheterization as a possible solution, and, by the time all was said and done, everyone agreed that we should give it a try. Um, right now? Ack.

I cried a little and then pulled myself together and gave it a go with the amazing nurse Hazel talking me through. It was neither easy nor comfortable, but it also wasn’t as hard or painful as I’d feared. And, as horrible as self-catheterization seemed, Hazel unintentionally provided me with some good perspective while giving me instructions. “You’d be amazed how many women look at me blankly when I say ‘Put your fingers around your clitoris.'” I might have to pee through a straw but at least I know where my clit is!

That first week was awful. In addition to having to lug my new catheter samples (including some alarmingly long ones) and lubricant, I carried what is commonly referred to as a “hat” — a plastic container that sat on the toilet seat so I could measure my output and report back to Hazel, who would then help me figure out how many catheters to order. Some days I managed to catheterize maybe twice after rendering my ladybits sore from inept poking around. It is a cruel coincidence that folks with MS who have to self-catheterize also likely have hand tremors and/or poor manual dexterity. Even now I sometimes struggle, but I did eventually get the hang of it. Dr. Phillips told me the goal was to be able to sit through a whole movie, and within a month I could do just that. 

Look I made a hat!
So, since 2012, I have peed unassisted only rarely, usually in what my father charmingly refers to as “floating molar” situations, where even my uncooperative bladder cannot help but behave properly. Self-catheterization has become as normal to me as toothbrushing. I cheerfully discuss my catheter needs and preferences with the staff at 180 Medical. (If, heaven forbid, you or someone you love ever has catheter needs, I cannot recommend them highly enough.) I have bought myself a series of stylish bags in which to hold my stash. I have been grateful not to be a slave to my bladder. Still, when I hear someone forcefully peeing in a stall next to me, I get a little wistful, knowing that will never be me again. Next time you have a really good pee, enjoy it for me.

P.S. Medical lubricant seems to come in two sizes — ketchup packet and large toothpaste tube. Once when I was out to dinner with my friend Donna, while getting up to go to the bathroom, a toothpaste-sized tube clearly marked LUBRICANT leapt from my purse, falling at the feet of our waiter. Donna made a noble effort to kick it out of the way, but it was too late. Lord knows what that waiter thought I was doing with that lube, but he didn’t make eye contact with me for the rest of the night.

3 thoughts on “The Urethra Monologues, Part Two: In Which I Am Thrust Into the World of Self-Catheterization

  1. I, like many others, had no idea that MS included this charming little side effect. Thank God that you have boundless courage and an amazing sense of humor. I hope some meds are created soon to help cure this disease. Keep fighting, you brave woman!!


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