Warning: this post concerns incontinence, a subject that disturbs some people. It disturbs me, too, but I'm in the process of convincing myself that we human beings could support each other better if we talked about it.
I first started having MS-related bladder symptoms in the late 1980s (not quite ten years after being diagnosed). MS-related nerve damage affects bladder function in a few ways. Nerves fire causing muscles around the bladder to spasm. That causes the brain to think, "I gotta go." Conversely, when the brain tells the sphincter to let go, the message doesn't always get through. So I felt like I always wanted to pee, sometimes peed without warning and sometimes couldn't pee when I tried.
My first response was to wear pads in my underwear to avoid accidents. That worked for a while, but I reached the point where my first stop at any venue was the restroom. My neurologist referred me to a urologist who promised, "I'll give you your life back."
The first step was a urodynamics test: the bladder is filled and emptied through a catheter so medical folks can watch what it does. It showed I had urinary frequency, urgency and hesitancy. I started taking oxybutynin, a medication that reduces spasms in the muscles around the bladder. I also learned to self-catheterize. When I needed to pee, I'd insert a small plastic tube along my urethra so that I could fully empty my bladder. Because that increases risk of infection, I also took nitrofurantoin, an antibiotic targeted to bacteria that cause urinary infections.
I did feel like I had my life back: less fear of embarrassing moments, less needing to know the location of every restroom in every port of call.
That combination worked well for about ten years. At some point, leaks started occurring again, often enough that I began wearing "disposable underwear." Luckily this was at about the same time that bladder taboos relaxed enough that such products were available at Target and Walgreens, rather than only by special order.
A little more than a year ago, I realized I was going through three or four pairs of underwear each day and was wet much of the time. Two factors were at work: my urinary symptoms were increasing and my legs were weaker. I would delay or avoid visiting the restroom because I was afraid of falling when transferring to the toilet. My neurologist suggested another urologist consult.
After trying some alternate medication (which didn't work as well), my urologist scheduled me for another urodynamics test and an ultrasound to make sure my kidneys were not being damaged by urinary back-ups. Then he suggested the Botox treatment. Botox injections into the muscles around the bladder paralyze them. No spasms means no urgency and no frequency. He made it sound like an easy, in-office procedure, but cautioned we'd have to get insurance pre-approval.
I was surprised and anxious when the scheduler called to set me up for "surgery" and advising that I see my regular doctor for a "pre-op exam." My doctor declared me "healthy, aside from the obvious" and assured me pre-op exams are the norm these days "just to cover somebody's backside."
The surgery was surgery: six hours at the hospital with a flurry of forms, repetitious checks of name, birth date, drug allergies. The (20 to 30) injections were done, thank goodness, under general anaesthesia. I was sent home with pain pills I didn't use.
Symptoms increased slightly for a few days and, the Tuesday after the Thursday surgery, a miracle occurred. No urgency; no frequency; no leaks. After all these years, this is a heaven-opens-angel-choirs-sing miracle.
The downside is that this is a temporary condition that will last some months. At some point, symptoms will return and we'll have to do it all again. Until then, I have my life back. Again.
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