I’ll admit that this isn’t something I love to discuss, but it’s an important issue because so many people with MS deal with it. The National MS Society says at least 80 percent of people with multiple sclerosis have bladder dysfunction. It’s invisible and uncomfortable. And unless you experience it, it’s difficult to comprehend the physical and emotional toll it takes on you.
Before I get into my personal story, here’s a quick explanation of bladder dysfunction — if you don’t mind some nitty gritty details. When people with a normal, healthy bladder feel like they have to pee, they can hold it until they know that they really gotta go. Then they can hurry to the toilet and empty their bladder completely.
But for people like me with bladder retention (a common type of dysfunction), there’s a constant feeling of a really full bladder. When we try to empty, it’s a slow dribble without much volume. The bladder doesn’t empty completely, which can result in bladder and kidney infections that require antibiotics and make you feel absolutely miserable.
For years, my bladder problems held me hostage in my own home, where I knew I was safe if I had to go to the bathroom every few minutes or if I needed to self catheterize to empty my bladder completely. Before even considering leaving the house, I had to think about where I was going, how long I’d be there, and whether a bathroom would be close by.
I’m sad to say I missed many baseball games because of this. I’m a loyal San Diego Padres fan, despite their losing record. I had many opportunities to go to a game but I knew I would likely be in the bathroom for a lot of the game, or even worse, wouldn’t be able to empty which meant I’d have to self catheterize in a public bathroom. No thanks, can’t make it!
After many failed prescription medications to manage my condition, my urologist at the time suggested a procedure to dilate my urethra. He did this with an instrument known as a filiform, which he lubricated and passed through my urethra. Local anesthesia is sometimes used, but wasn’t in my case (I wish it would have been!). The process is repeated with larger and larger dilators until the passage is determined to be open enough to easily pass the urinary stream.
Well, the procedure didn’t work for me. And to top it all off, it was one of the most painful experiences of my life — and I’ve had my share.
I was so desperate to sleep more than an hour at a time without having to get up and try and pee (usually to no avail) that I began self catheterizing. Using a child-size catheter (because my urethra happens to be small, which isn’t ideal when you have bladder retention), I was taught where and how to place the tube up my urethra in order to empty my bladder completely.
I remember very well the day I learned this little trick. My mom was with me at the doctor’s office and watched as I sat on a commode shaking and grimacing as I tried to get the tube up my urethra. It was painful and felt very wrong. I’ll never forget seeing my mom crying, standing in the back of the room, giving me space to show the nurse that I could do this on my own. It was one of the first times I realized how hard MS is on the people that love you.
I have heard some people say, “you’ll get used to self catheterizing,” but I never did. I would dread it every time — which was sometimes five times a day for more than two years.
Seeking a better option, and a way to end the recurrent bladder and kidney infections I was getting while self catheterizing, I met again with the same urologist that performed the barbaric urethra-opening procedure on me. He told me the only way to avoid long-term damage from infections was to undergo surgery that would allow my urine to bypass the urethra and go directly from my bladder to a bag I would wear on the side of my body.
“No way,” I remember saying through my tears in his office. “I’m too young for that!” I was 34, but that option wouldn’t appeal to me even if I were 84.
I left his office and called my go-to-guy, my neurologist Dr. Thomas Chippendale. He referred me immediately to a new urologist who was proficient in a relatively new procedure called InterStim Therapy. It would involve implanting a pacemaker-like device into my body to fix the communication problem between the brain and the nerves that control the bladder.
I met all the qualifications to receive this new implant, and seven years ago I had the surgery. It changed my life in ways I can’t begin to explain. I still have bladder problems now and then — that part of my body is far from fixed. I’m now experiencing what’s called overactive bladder, where it feels like I always have to pee, but very little comes out when I try to go. I have to self catheterize occasionally but overall, the implant gave me a lot of my freedom back.
There are other bladder symptoms associated with MS, including incontinence. For people who suffer from that, adult diapers or thick pads become part of daily life. I have spoken to many people who live with this and it’s just as awful as bladder retention.
Although bladder issues are embarrassing and uncomfortable, there is hope. If you have problems with your bladder, talk to your doctor about your options. I think you’ll be glad you did.