I should start by clarifying that if I’m upset with any part of my body (referring to it as a bitch), it would be my brain, since my neurological disease has been wreaking havoc in different parts of my body for a long time. I’m writing this in case there is someone out there that is dealing with some of the same issues… maybe knowing someone else feels your pain can be comforting.
I have written about my bladder issues for many years. I Really Need to Pee! was written way back in April 2012, and SomeONE with MS talks a lot about the invisible symptoms living with daily bladder inconveniences. My symptoms were initially urinary dysfunction/retention, which meant I wasn’t able to empty my bladder completely, so I’d end up with countless bladder and kidney infections.
After a few failed attempts to “dilate my urethra”, and many years of having to self-catheterize, I had surgery in 2005 where an implant (a pacemaker-like device) was effective in helping my MS brain send signals to tell my bladder to empty. It helped me for many years, but bladder issues have been prevalent in my journey with MS for as long as I can remember. Since that initial surgery 11 years ago, I’ve had four more to replace it or to change the battery.
Last year I started having a different kind of problem with my bladder. The technical term is Overactive Bladder (OAB). Here’s what WebMD says about it:
What is Overactive Bladder?
“How often do you usually use the bathroom daily? Is it more than seven or eight times — and you can’t wait? Are you getting up more than once or twice a night to go? Do your trips to the bathroom cause problems with your job, social life, or relationships? You may have overactive bladder.”
YES to all of the above! The way I describe it is that I always feel like my bladder is full, so I’m in the bathroom often (roughly 20 times in a 24 hour period), with less than a couple of tablespoons trickling out. Besides this being extremely inconvenient, it’s uncomfortable and can cause retention – which often leads to me having to self- catheterize (no, you don’t get used to it). Imagine trying to plan a day at the beach or a baseball game – with the anxiety of needing to be sure there is a bathroom close by. “What if I can’t go and need to use a catheter? I’m sure the bathrooms are not sterile enough.” This is just one fear.
Working that requires traveling by airplane is awful. I try to get an aisle seat whenever possible. But if I get stuck sitting in the center or by the window and my neighbor falls asleep with his/her tray table down… I start to panic and feel like my bladder is going to burst (it won’t, but it sure feels like it). Traveling long distances in the car is an issue as well. I make plenty of pit stops, and if I happen to be stuck in traffic… well, you can imagine.
LiveScience says a healthy adult bladder can hold up to 16 ounces (2 cups) of urine comfortably during the day, with the average person urinating 5-6 times a day, and about four cups (800mls) at night, according to the National Institutes of Health. Nerves in the bladder tell you when it is time to empty it. The sensation becomes stronger as the bladder continues to fill and reaches its limit. Problems in the urinary system can be caused by illness, injury or aging.
I’ve been getting Heparin Instillations in my urologist’s office once a week for about a month. A catheter is placed inside my urethra and my bladder is emptied completely. My doctor then inserts a cocktail of heparin and lidocaine to try to numb my overactive bladder for at least a day, sometimes longer. I do my best to hold it as long as I can so the medicine can coat my bladder, which gives me a little break from the pain of always feeling like I have to go.
I went last week but my urine tested positive for an infection, so I was sent home with strong antibiotics and no heparin. I didn’t get the little break I was hoping for. Fingers crossed for this Thursday!
Botox for Your OAB
Botox isn’t just for your forehead anymore. Doctors inject the drug directly into various places in the bladder muscle. That partially paralyzes it to ease overactivity, but leaves enough control so you can still go. Just as with wrinkles, the Botox effect doesn’t last forever. I had my first Botox surgery in July with no improvement. I’m scheduled for a second surgery in October with an increase in the amount of medicine (Botox) to be injected. As with most therapies, it works for some and not for others. I will try again, with the hope that I will see some results.
It’s hard to explain this condition to people, and since it’s one of my many invisible symptoms of MS, I end up isolating myself. If I’m asked to go to a concert or a play or a party – I think about it for a second and decline, or accept but ultimately back out. It messes with me physically, but also emotionally, in a much bigger way than I ever realized. It’s so overwhelming that I honestly think it’s easier just to stay home – so I can go to the bathroom as often as I need to, and not limit the amount of water I drink. I have kept good friends away (you know who you are, and I’m sorry), just so they won’t have to see that I’m struggling right now. As I’ve said before, it’s easier to deal with it on my own, but it’s taking a toll. There have been days I’ve wanted to end all of this pain and suffering and have urostomy surgery; which is when a permanent bag collects my urine and hangs on the lower part of my stomach, (sexy, huh?). Apparently they often remove the bladder since it isn’t necessary anymore. The more I read about it, the more I hope and pray something will work for me soon.
I’m really hoping the next time I write, it will be to let you know that I’m feeling better and that something is working. I have faith, hope and love in my life… I refuse to believe this is God’s plan for me forever, it’s just a very long, rough bump in my road.