OK, something most people do not like to talk about but is obviously affecting most of us with multiple sclerosis; bladder problems. Bowel too but in this article let’s focus on bladder. Baby steps right? According to the National MS Society, at least 80 percent of people suffering from multiple sclerosis experience some sort of bladder issue! This is sometimes referred to as having a “neurogenic bladder” as it is a somewhat broad term that pretty much covers everything MS can cause regarding the bladder, it is defined as bladder dysfunctions caused by neurological damage to the CNS (central nervous system) or PNS (peripheral nervous system). But before going on I just have to say, I am writing this in hopes of starting a conversation so I might not have a lot of personal experiences to share in this article but I want to identify issues I know most of us have.
So what exactly fits under this term? MS can cause urinary incontinence (not being able to “hold it”), urgency (feeling like you really need to go), retention (not being able to go even though you feel like you really need to) and sometimes frequency (having to constantly go). If I left something out feel free to let me know below! Anyways, there are lots of ways to deal with all this both medically and habitually but either way, it really can greatly affect your life. Let us briefly go down the list, but first, be right back, nature calls!
OK, urinary incontinence. Now, I don’t deal with this often, but I have had my moments in the past and as an adult it can be really embarrassing (even when you are in the hospital) but I have to put it out there so other people will talk about it too. Someone has to start the conversation and right now it looks like that someone is me. All I can say though is of all the MS symptoms I have had to deal with this one probably makes me feel like more of a child than any other. They typically seem to prescribe oxybutynin for this (as well as urgency/frequency) and I would say it works OK, doesn’t eliminate these symptoms but definitely makes things better. So, if that does not show how open I am trying to be on this topic I don’t know what will.
So now we move on to urgency, this one I hate. Feeling like you have to go so bad that you think your bladder is going to explode, you run to the bathroom and… “sound of a single water drop”. Pretty anticlimactic… Sometimes you do actually have to go (everyone is different I suppose) and that brings about my least favorite problem; feeling fine for a while before all of a sudden, out of nowhere, no warning, being hit by the feeling of having to go 5 minutes ago. Guess that can also make you feel childish in that most children don’t tell you when they will have to go to the bathroom soon but instead when they have to go to the bathroom NOW and holding it is just not an option. This is something Oxybutynin is good for but honestly? I just watch how much I drink when I am out and about. When someone asks me if I want a cup of coffee (a diarrheic which makes you have to go to the bathroom) the first thought that crosses my mind before I answer is “how accessible is the bathroom here?”
Retention, this one sucks because you can once again feel like your bladder is about to explode but you just can’t go… no relief… When this symptom comes around for me, it is usually not so bad but a lot of people have it so severely that a catheter is needed and speaking from experience I can tell you that is not fun at all… But when you have been dying for relief for almost a day it can be… relieving? I am not sure if there are any medications out there that have been shown to help with this symptom but nothing had ever been mentioned to me. This is definitely one of those things that people need to talk about because I am certain there are better/more proper ways to deal with this!
Lastly, frequency. This (to me) is mostly just annoying. Having to constantly go! It’s like half a glass of water can buy you an all day ticket to the restroom! Maybe I just came back into the room from the restroom and as soon as I sit down I have to get back up and go again! Usually I get more time than that but still! This is another job for oxybutynin but again, I just try to watch how much I drink (especially diuretics) and since I am usually here at home that is enough for me. Everyone is different and everyone’s situations are different as well. Like for me none of these symptoms are “end of the world” status but if I had a full-time job out of the home? I can’t imagine what sort of issues would become apparent!
I really do encourage people to talk about this. It will help so many others learn how to deal with this in different situations and maybe you will learn a better way to handle it as well! Either way the minor embarrassment (you may fear) of talking about what 80% of people in the MS community deal with too might spare someone else from major embarrassment out in the world where most people don’t fully understand MS. If more people start talking about this stuff it will become less of an “embarrassing” topic but by NOT talking about it we are just reinforcing the idea that this is an embarrassing subject that we shouldn’t talk about. OK, nature is calling again (too much coffee haha), so while I step out start sharing below!