Uh Oh… Potty Time!

Uh Oh… Potty Time!

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.

Bladder dysfunction

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!

Incontinence

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.

Urgency

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

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!

Frequency

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!

This article represents the opinions, thoughts, and experiences of the author; none of this content has been paid for by any advertiser. The MultipleSclerosis.net team does not recommend or endorse any products or treatments discussed herein. Learn more about how we maintain editorial integrity here.

Comments

View Comments (31)
  • tfs
    2 years ago

    This is right up there with the major symptoms of fatigue, cognitive dysfunction, depression, yada yada yada.
    I have been shamed twice by my family members for the need to relieve myself quickly. If I am in a safe place like the woods and I need to empty my bladder… like right now, like quickly NOW.. I will do it. It is far more humiliating to walk past everyone carrying grocery bags with pants soaked from the crotch to the ankles. Though that can happen… I would rather avoid that. To the shamers, deal with it. It is not a Seinfeld moment yet, and I would use Depends/catheter as required. Not there yet.

  • Matt Allen G author
    2 years ago

    It sucks because I don’t see why people would feel this is a moment to shame someone for… When you gotta’ go you gotta’ go, period.

  • whiteboy592
    3 years ago

    I was diagnosed in September of last year and going to the bathroom is better than before I got diagnosed but not back to normal, I have all the symptoms you’ve listed but I’ve found that sitting when I have to pee helps and pushing on my bladder sometimes “as embarrassing as it is” but I’m just wondering if it ever gets better and how does everyone else on here cope with having a chronic disease like MS?

  • whiteboy592
    3 years ago

    Thanks man

  • Matt Allen G author
    3 years ago

    well, yeah, I think a lot of us learn “those little tricks” but for me? I have really bad days and then days where I am back to my baseline which is “bad but manageable”

  • djkendrick
    3 years ago

    I have leakage. And also, sometimes I can’t feel it when I leak – or I think I am finished and find out that I am still going when I stand up. Yuck.

  • Wayneh143
    3 years ago

    My urologist has me taking oxybutin and Flomax. Generally speaking when I’m home, which is now constant because I’m retired, I seem to have more trouble than when I’m out! If I’m doing something like reading and replying to emails I always say to myself, just one more! But getting up usually triggers the urgency!

  • Matt Allen G author
    3 years ago

    “Just one more” – famous last words haha… Hard for me to not play that game as well though,

  • kristensimas
    3 years ago

    Oh my favorite topic or should I say the vain of my existence. Let’s start with the bladder. I have had problems since day 1 and it’s been 13 years. I am on Ditropan and for the most part it helps. My doctor wanted to increase it but the dry mouth side effects were too much. I have been self cath-ing for 7 years. It was my saving grace. Trust me it took me a long time to figure out “where to put it”. I never knew about where it went. So between the cath-ing and Ditropan I was able to handle it but trust me I know where all the bathrooms are, especially on the highway. Here’s the best part…ready…..I had to be put on Lasix for edema. Yuppers I need to pee more. Really????? At first it was rough, but actually it has helped. Go figure. I can’t explain it. Now the “pooper” as I like to call it. I am complete opposite. I can go for days with out “pooping” and there are days it can’t stop. And there are days that no matter how well I clean myself there is always more without pooping. I hate admitting that one. So needless to say everyday is different. I just know where the bathrooms are everywhere I go. I’ll race you for it even!!!

  • Matt Allen G author
    3 years ago

    Haha yes, the first thing I do when I go somewhere is scout out where the bathrooms are and sit as close to them as possible. I forgot to mention that because it is just second nature now!

  • RevTammieHartsock
    3 years ago

    I have loss of My Bladder & Bowels (mainly Bowels). I take 8 Multi-Symptoms Imodium a day & I still can’t go no where. I sit at Home everyday crying & asking (Begging) God to call Me Home (Heaven)! I want to die so much! This is Hell on Earth !!!

  • Matt Allen G author
    3 years ago

    surely there is a medication out there that you have no tried that can help, even a new DMD to help control the inflammation causing this symptom? I can only imagine though, I am sorry :/

  • gparado
    3 years ago

    Thanks for the article. I’ve suffered from all of these symptoms at one time or another, but thankfully not at the same time. During my first flare-up when I was in my early 20s, I felt the extreme urgency to urinate only to find myself standing at the urinal, feeling like I had forgotten how to urinate.

    During my current flare-up, I experience the following symptoms: urgency to go, frequency to go and retention. I went to see a movie and had one small bottle of water and found myself having to go at least 3 times during the movie. I also find myself getting up to urinate sometimes 3 times a night, but when I visit the restroom, only a small trickle comes out. At first, I thought it was due to me getting older (prostrate problems, perhaps?), but this seems to have started shortly before the start of my second flare-up.

  • Matt Allen G author
    3 years ago

    Ask your doctor about VESIcare, it’s not available as generic but maybe it would be right for you? Seems better than Oxybutynin and I just barely learned about it AFTER this post, might be worth looking into

  • Spratt
    3 years ago

    Great article — thanks for sharing!
    I take bladder medication, but the best and most helpful advice I’ve ever been given was to stop drinking soda/pop. I used to drink cola frequently, but no more. This simple step has helped my bladder issues tremendously! It hasn’t been too difficult to switch drinks, to water mostly. I fall off the wagon sometimes, but only when I know I will be staying at home for the next day or so.

  • Matt Allen G author
    3 years ago

    It’s the caffeine, caffeine is a diuretic. I have not had soda in years haha but coffee is still my vice and that makes it horrible!

  • Kristie
    3 years ago

    I battled with bladder problems for over a year. I thought I had UTIs constantly. My primary finally sent me to a Urologist. Best visit eve. It is then that I learned 80% of us MSers have issues. She then ordered a series of tests to confirm. Best set of tests I ever did. It was confirmed. I have a neurogenic bladder. Yes, I self cath. I am cool with. I will tell you why. The first night I did it, I slept 8 hours straight without getting up. Before, I was up at least 4 – 6 times a night. I could not go shopping, watch a movie, or go out to dinner without having to find the bathroom. I will advise this – if you are having issues, get some help. This is no way to live. There are things out there to help. Good luck, friends!

  • Bobbymezz
    3 years ago

    I thought I could never self cath. “You want me to put that where?!” But honestly I bit the bullet and started to do it in ’07. It’s made a world of difference. I got my life back (no more pee jars in the car, running to the bathroom or Depends) and I’m no longer a slave to my bladder. Kristie is right, self cathing can get you a good night’s sleep. Guys, I know it’s real tough at first, but you get used to fast. Now I don’t give it a second thought. If you want your life back, self cath. Caths now are one-use so the risk of bladder infections is minimal. Thanks for this post, Matt.

  • Matt Allen G author
    3 years ago

    Yes, I usually get up twice a night to go to the bathroom but I am not sure I am ready to self cath, I mean I have but it was for a very short time and I hated it

  • stillhere
    3 years ago

    I have had all the bladder complaints urgency, frequency and retention. My neurologist never said a word when I complained, even though she was treating me for MS. My doctor sent me to a urologist. My urologist treated me for a prostrate problem for 4 years with 3 different treatments to no avail. I was getting ready to start with the catheter. Because of a miscommunication with my neurologist she gave me a prescription for 5mg Cialis. All of my bladder complaints were gone within 2 weeks once I started taking it. I never went back to the urologist. I fought the insurance company for over a year because they will not pay for an erectile dysfunction drug. I finally got the insurance company to except the fact that it works for my bladder problem. For the last 2 years I can drink a cup of coffee and do my shopping and make it home without an accident. I would like to know if this works for others because it has been such a god send for me.

  • Matt Allen G author
    3 years ago

    Interesting, I have never heard of the Cialis solution. I would definitely try it if I was not already completely fed up with my insurance denying my medications like Ampyra…

  • Mare
    3 years ago

    Hi: I have had to use a catheter several times per day for the last nine (9) years and it really is no big deal.

    I can still pee on my own, but the problem is that I cannot empty my bladder completely, which leads to bacteria build-up and possibly death in a matter of days (literally), hence self-catheterization daily.

    If the doctor ever tells you that you will have to use a catheter everyday to save you life, you will do it. I can now do it anywhere, public, private bathrooms, in the dark, etc.

    DO NOT BE INTIMATED BY IT PLEASE.

  • Matt Allen G author
    3 years ago

    Oh I have, I am just not ready to do it daily yet, I am pretty much always home so I do not mind constantly getting up to walk to the bathroom. Kind of sucks at night but for now I can manage by changing habits, like drinking liquid too soon before bed haha….

  • JULIE SAVENE
    3 years ago

    I agree 100% as well…I do wear a diaper… just in case…I too play the ‘one more minute’game which my husband is quick to tell me I should not.

    Thank goodness for my husbands help & patience as I need his help everytime I go. I have taken to wearing elastic waist pants(gone are my cute zippered pants-men just don’t understand) because he has to do the up/down thing for me-I have lost most use of my right side.

    I limit my liquids until I am home so I can limit my trips at unfamiliar bathrooms/narrow doors & small stalls. I am lucky/blessed to have had a father who took care of my disease financially when he passed so I could improve my bathroom at home, but I prefer to have guests at my home instead of going to their house or out. Yes this has made me a kind of homebody, but when you have to rely on others for everything you kind of go along with their wants!

    I am sorry for rambling, but it is very nice to have an outlet where people understand just what I am going thruogh…

  • Matt Allen G author
    3 years ago

    I am the same about my home vs other people’s homes. It kind of sucks but it is definitely my preference. When I am away from home I try to not drink anything as well, especially coffee haha…

  • John J Miller
    3 years ago

    Agree 100% with this. Done or have done 90 % of whats been posted. Major difference is I keep a portable urine bottle close to hand most of the time. When I have to go I don’t have time to transfer from my lift chair to my power chair get to the bathroom then tranfer to the toilet. When my bladder says I gotta go now, I’ve learned the hard way not to argue. The only thing I haven’t done is buy a new house. Although I am considering having the bathroom done changed out for a wider one.

  • Matt Allen G author
    3 years ago

    haha yes, that is what I have learned, just don’t argue, the bladder always wins!

  • patrice59
    3 years ago

    For spastic bladder my neurologist prescribed Toviaz. It’s wonderful!

  • Matt Allen G author
    3 years ago

    I have honestly never heard of that, everyone always talks about Oxybutynin, I will have to look into that, thanks!

  • Sue
    3 years ago

    Yes, frequency, urgency and urinary retention are a big problem. What makes it worse is transferring from the wheel chair to the commode over the toilet or the toilet with no arms. When I go out, my husband has to help me get in the bathroom , on to the toilet, off the toilet and back out. Oh yes, pulling pants on and off are a challenge when I’m in a rush. Because it’s so labor intensive , I try to wait, until I’m sure….then urgency.
    Most bathroom doors are not wheelchair friendly (too narrow). At home, I like to be as independent as possible . This means grabbing the arm of the commode and flipping on the toilet. The left leg and arm are not working well. I live dangerously .
    Thank you, husband ,for being here with me most of the time! If he goes out for several hours, I limit my fluids and hope for the best.
    The good thing is that I don’t need a catheter or diapers.
    M S sucks, big time!

  • Matt Allen G author
    3 years ago

    I do not play the dangerous game of “I think I can wait” – nope, I go the split second I detect I may be able to! And yeah, the standard door widths are not so great for wheelchairs, I have seen where someone who knew he was in a wheelchair for life bought a new home and had all the doors and walkways made extra wide for his chair. It was cool but who can afford that??? Haha

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