Beth: A stroke will not get her down!

Dear Trudy,

People having bladder and bowel difficulties is ridiculously stigmatized. I’ve rarely spoken about it, I could count the people I’ve told (other than doctors) on one hand. I don’t plan on spreading the word about my neurogenic bladder to everyone I know, but I am seriously thinking about making some videos explaining my struggle. 

I had a stroke 11 years ago that wreaked major havoc on some functions of my nether regions. The incontinence has improved a bit on its own, and I’ve learned strategies to keep myself a little drier. But at the same time, the leakiness level varies. There are days to weeks (!) that my faithful ultra-thin stay pretty dry, with just a little dampness at the end of the day. Other times, I’m changing that pad 3 times a day (sometimes my underwear and bottoms with it). Sometimes I can “hold it” and other times the urge/spasm is so strong my muscles do no good. I’ve never had to cath, but I did have problems emptying occasionally. I’ve tried medications, timed voids, biofeedback, nothing really worked. I’m young. I’m 34 now, and this started when I was 23. 

For the last decade I have worn pads and elastic waist pants most of the time. Without both of them I’m afraid I might not be able to make it to the bathroom in time when my bladder wants a little exercise (spasm). Often I DIDN’T make it in time. I’ve wet myself countless times, soaked right through the pad. Many times I’ll walk up to my door, and as I put the key in I feel my bladder hollering. “Hey! Hey you! Time to go!” The urgency is so bad I’m holding my self-doing the pee pee dance. Despite this, I don’t make it across the living room without urine running over the pad’s capacity, down my leg and often leaving little puddles. 


When I finally make it to the bathroom, after attempting to walk with my bad balance and crazy leg (I have gait problems also, and walking and bladder spasms don’t mix well in my book), sometimes I piss like a racehorse. And sometimes my bladder is like “oh, what was the rush? I already went. You should change your pants and clean up with a wet towel.” Thanks a lot.

Right now I’m on the fence about putting a pacemaker in my butt or getting something that includes the word toxin injected onto the aforementioned nether regions. Not too excited about either of those, but I’ve exhausted other options. I have an interstim stage 1 scheduled in a week, and the more I read and think about it, the more I want to cancel. There’s just too many things that can go wrong there that don’t have much to do with the actual surgery. If that makes any sense.

I appreciate the humor and candidness of your blog, it’s definitely the first one on the topic that I really enjoyed. I don’t see why this page doesn’t have more likes. Wish me luck, and I hope to talk to ya soon.