Would you be willing to share about bladder problems? What were the earliest signs of a problem? Did you see your doctor right away? How have the symptoms progressed? How did you adapt? Thanks for responding.
Bladder issues: Would you be willing to... - My MSAA Community
Bladder issues
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greaterexp
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This is an issue at times for me.
The earliest signs were a sudden urgency, usually when getting up from a sitting position.
That is the weird part as I don't feel I have to go until I stand up. From there,it is a mad dash to the bathroom.
I haven't had any public accidents but then I don't push it like I do at home.
Things have stayed the same for me for quite awhile now and the way I adjusted is to visit the bathroom more often or even when I think I don't have to go.
If I do pee my pants I will blame it on some someone else.
Don't think a toddler can't teach you anything!
I got that from my nephew. 🤣
If scapegoats don’t work, rationalization is a good back up. Thank you for sharing about your bladder.
You're welcome 
My bladder problems sway back and forth between urgency and hesitancy. After 25+ years with MS, it's still about the same with little progression (crossing my fingers). One of my biggest fears is to having to start self-cathing.
MSers: we're stronger than we realize, and we will face our next challenge when needed.
I started having less ability to "hold it" and realized when I felt the urge to go I needed to go before - oops, too late! I have urge incontinence which a lot of women get as they age, so i took Detrol for a few years and it worked. Then it didn't. Then I got up several times at night to go even though it was just a trickle and my bladder wasn't emptying completely (post void residual measured at my doctor's office). Then I started having 3 or 4 UTIs a year. This had been happening for 3 years straight. My doctor was going to send me to a urologist and I was terrified that I was going to have to start straight cathing myself. I'd been doing my own research and had tried cranberry supplement, then cranberry + D-Mannose combo supplement, and I had some success with those but was still getting the occasional UTI when I found someone who said they took 1500mg D-Mannose before bed daily and stopped having UTIs. So I switched to that (I take 3 of the 500mg caps at bedtime religiously) and haven't had a UTI since. It's been 2 years or more. D-Mannose prevents pathogens from sticking to the bladder wall so even if they get in there they don't set up an infection. Of course I still get up at night a couple of times to go pee, and I have to be very careful to drink at a minimum 40 to 60 ozs water a day (my goal is 60 but sometimes I'm a little short). But it's worth all that to not straight cath. It's working for now so I'm sticking with it.
I was told by my urologists 8 yrs ago that I had incontinence. and just this year I went to see a womans health care doctor that diagnoised me with bladder sphincter dysserngia, she did a urodynamics test and found out that way. I asked her if this could mean I have MS she told me not likely because of my age, and I'am 62. I was diagnoised few yrs ago with neuropathy and fibro.
greaterexp in reply to
Thank you for bringing up the urologist referral. Testing can really help pinpoint the real problem, whether it is MS-related or not, and what can be done about it.
in reply to greaterexp
I think so to.
goatgal in reply to
There are several seniors on this site who were diagnosed with MS at age 65+. I was diagnosed at age 70. but had symptoms similar to yours for years before. If you have a concern, find a neurologist.
in reply to goatgal
And did you not see my posts here, I said I do have a appt to see a neurologists. In July of this year. Thankyou.
I have appt in july with a neurologists, I was told since I'am a new patient in their office that I have to wait over a month before I can be seen. Hard at times to keep waiting.
I actually did pelvic floor PT. It was pretty useless except I found out the size of my bladder only allows to drink so much (I think it was 250 ml in two hours, which is ridiculous). I will not go on medication for incontinence. Poise pads and Victoria Secret shorties underwear have worked for me.
in reply to IFwczs
I also have seen a PT for pelvic floor and I only went 3 times because the long ride wore me out. I think the PT would have helped little if I had of kept up the treatments. I don't drive I do not have a car so I have to ride the transit ride and It shakes me up so bad to ride that I can barely walk after wards. I stopped the PT.
IFwczs in reply to
I don't have a car either. But back then I was at least able to walk without assistance. But it really didn't help me. The physical therapist told me that just because I have MS doesn't mean I should have these problems. But doesn't it? Try Kegel exercises at home.
While it's true that not everyone with MS develops problems with their bladders, it's also an established fact that MS can cause such issues, mainly with incontinence or inability to empty the bladder completely. One reason I asked this question was because my urge incontinence (only a dribble) has not recently been helped much by Kegel exercises. So is it my aged, multiple pregnancy bladder, or is it my MS? I guess only a urologist will know that answer.
I can guarantee that a urologist will want to put you on medication. I am very susceptible to side effects and try to limit the number of prescriptions. Good luck, and let us know what your doctor says. But my bet would be on MS.
These symptoms started in my 30s before I even knew I had MS, and I have no children. So it is MS.
in reply to greaterexp
I'm guessing it's a combination. I had urge incontinence for years before I had MS. But now I know some of what has happened with my bladder is the MS. At least it's bladder symptoms that are common in MSers. However, I didn't ever go to the urologist for testing. As long as things are pretty well under control I'll keep doing what I'm doing. I do still have urge incontinence which is worse since I'm older and maybe worse with MS too. I don't know. I wear a liner just in case, especially when I'm away from home and might not know where the nearest bathroom is.
Why would your PT tell you just because you have MS does not mean you should have those problems. does not make sense why he or she said that. 🙄
greaterexp I have since the beginning which is why I stay home a lot. Mainly bc I never completely empty my bladder. Bathroom breaks last 5-10 minutes. Even when I’ve stopped going for a few minutes...I start going again (without feeling it) when I stand up. I don’t wear light colored clothing bc it’s too noticeable (& embarrassing). It seems worse towards the end of day when I’m more tired. I haven’t seen a urologist or started wearing protection...yet...but the trips up & down the stairs to the bathroom every 15 mins definitely makes me more tired. -Kris
Thank you for sharing about his. I'm sorry your problems really limit you in your activities. Even with my minor problems, I'm a little reluctant to go anywhere, especially if I don't know about bathroom accessibility. I guess I may need to look into more protective items.
greaterexp The girls help me find the bathroom as soon as we go anywhere. We stop so I can try - then they come with me anytime I ask so I don’t get lost (or stuck in the stall:). I’ve had restaurant staff waiting outside the door to help me back to find our table. Another reason I haven’t left the house by myself since 2014. It’s all good-I finally agreed to repeat neuropsych testing which is scheduled for the end of September.
I feel it also has to do with the amount of liquid and what you eat, also MS medication. Have you noticed a difference?
IFwczs I really try to limit my liquids - especially starting mid afternoon. I eat healthily small snack type meals. I’m not on a DMT. The only thing I’ve found to help me sleep thru the bladder spasms @ night is medical cannabis...which I’m no longer on bc of the price.
kris1973, we (actually everyone) are supposed to drink 64 ounces a day. Limiting liquids is what I used to do - it only makes urinary issues worse. And, believe it or not, the bladder does get used to you drinking more and stretches. It is very important to drink a lot. Someone actually wrote here a couple of days ago that Ocrevus pretty much eliminated her bladder issues. Any reason you are not on any DMT?
IFwczs I used to drink 3-4x that much water per day so limiting it may not have been the right wording😂. I had a 2 months long reaction to copaxone. Ocrevus has the same ingredient + breast cancer rampid runs in our family.
Here's a cool calculator to use to find out how much any one (average, whatever that means) person without specific health issues should drink based on body weight and activity:
csgnetwork.com/humanh2owate...
But it doesn't take into consideration any special health problems. That's where a good doctor comes in handy. Bladder issues sure can throw a monkey wrench in the works, too, making timing much more of an issue. Even though I limit my intake after about 7 P.M., I still have to get up at least once a night. Sigh.
greaterexp Thanks! I get 1/2 of the recommended amount with just taking my meds each day.
That's an interesting little calculator but it doesn't note that a significant amount of the fluid we need is actually contained within the foods we eat, which is probably why the general recommendation is for 2 litres a day for most people who are not in a hot climate and who are not doing a lot of physical exertion. I noticed that when I put my numbers into the calculator it came up with an amount which was nearly 25% greater than the approx 2 litres I do drink each day.
It was correct in that the best indicator of whether you are drinking adequate amounts is the colour of your urine - apart from saying it should be white - if it was actually white then you'd certainly have the biggest UTI ever known to mankind! It should be a pale yellow/straw colour through to almost colourless. Any darker than that indicates that you're a bit dehydrated and need to get some fluids into you.
Every doctor I have ever asked says at least 64 ounces, not based on your weight or health condition. But I have read that going to the bathroom at night once before you turn 60, and twice 60 and after, is completely normal. (This research is for regular people, not MS.) So you are in good shape.
My issue came on suddenly. I was on my way to the bathroom and I just lost it before I could even pull my pants down. I was at the dr doing a bladder test and I had to drink a bottle of water and I had to hold it for an hour, by the time I hit the exam table and the test started the urge started. I told the dr I needed to go now I couldn’t hold it but the dr was trying to get me to hold off til the ultrasound results came but I wasn’t able. The ultrasound showed my bladder wasn’t full at all.
I eventually talked my gynecologist and she had me see an urogynecologist . That dr had me take myrbetriq for a month, after being on meds for a month he did an Urodynamics test which confirmed I had oab ( over active bladder).
I appreciate you telling us about your experience. It really helps to learn about others' situations. I hope you're doing better now.
It is
Wow! Who would have guessed the problem was not really MS-related? I'm so glad you found a solution...and a good urologist.
I've had urge incontinence for most of my life and when I was a child, stress incontinence. I've had only one or two UTI right after delivering but though I have tried Kegel exercises, I cannot seem to send the message to the correct muscles. I know the location of every restroom in all the places I shop, have pulled into fast food outlets just to pee, and wet my pants on my door step more times than I can count. Like so many, I visit the bathroom frequently, wear pads, and get up at night to pee...sometimes needing to mop up dribbles the next morning. In the last 6 years or so I have had several episodes of bowel incontinence: no pain, no warning, just sudden evacuation. I assume it is a contraction in the large colon that causes this without notifying the brain. This is so humiliating. Thank god it rarely happens.
No caffeine when I'm out in public! (Well not to much caffeine when I'm out of the house) 💓🌹
I saw this article, which addresses caffeine a bit:
mayoclinic.org/diseases-con...
Of course, if MS is the real culprit, the problem may be the nervous system. But there are still some good ideas here for most of us. I'm glad you brought up the bladder irritant question; it's not something I was giving much thought to, and it may make our problems worse.
Thank you for posting this great article! Interesting that bladder irritants are the foods and drinks we should avoid anyway.
OK, now from a 76 year old, diagnosed 5 years ago with MS. (My Neuro says that I have probably had it for many years, since my symptoms had be going on for so long.) I have had issues with UTI's since shortly after I was married 58 years ago! Have taken way too many antibiotics, for short and long periods of time mostly given by Uro's. I have had all the tests. Now, my routine is, after intercourse I void immediately, take one antibiotic pill, and use a vaginal hormone cream 2 - 3 times a week. (This was prescribed by my Uro and also my Gyn. I also take 2- 500 mg cranberry pills a day, morning and evening, and then sometimes mannose-D when I feel an irritation. All these things have finally stopped my UTI's. Most Uro's know that in some women, sexual intercourse can cause UTI's. If yours doesn't know that, maybe you should find another one. Also remember that UTI's can bring on an MS relapse! (I remember one Uro, many years ago who said to me "I don't know what you are doing to bring this on yourself." When I told my GP what he had said, he sent me to another Urologist! That one knew about it and treated me with respect and understanding.)
I haven't had a UTI with MS yet. Used to get them a lot when I was young. Urgency, oh yeah. I dribble if I don't get there fast enough!
My bladder problems have been throughout my life, but developed worse after a bladder surgery to fix a bladder neck issue. I am currently incontinent, and seeking to figure out if it is due to MS type issues or surgery more. Earliest signs were incontinence, both urge and stress. I waited a year to see a doctor, did many extensive tests, and they cannot figure out the issue. According to them, my bladder is fine, which would mean it must be a nerve issue or something else. ,My symptoms have progressed to where sometimes I have random leaks, but it isn't overwhelming. I don't always get the urge to go, so the solution for me was to do timed bathroom breaks, and wear either diapers or incontinence pads. If you have any further questions or would like to discuss in more detail, I am open about my journey. Thank you!
Had an issue one time...I have trained myself to go every two hours. I have whole body numbness, so I can’t tell when I have to go.
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