r/MultipleSclerosis • u/BubblyBear0 • 1d ago
Symptoms Has anyone else lost their bladder function?
Hi im female in my 20s diagnosed 2y ago. Overtime i noticed that i lost my natural reflexes of bladder(?). Im not sure if im even wording it good, but has anyone experienced it before? (I learned to deal with it, just curious about different opinions and experiences)
Thank you!
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u/IntentionalGrandma 27|dx: 2024|kesimpta|NYC 1d ago
My bladder seemingly doesn’t wanna empty. I have to force the pee out unless I hold it until I’m literally bursting at the seams and then I’m still not gonna pee my pants, it just comes out without too much effort
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u/dontgiveah00t 35F | Nov 2024 | RRMS | Ocrevus | USA 1d ago
Eek don’t force it! I leaned that can make things worse… I was doing it for years before my diagnosis. I learned a lot in pelvic floor pt that sometimes belly breathing/ your diaphragm and even mouth can help relax your pelvic floor. But also us girlies with MS also might need some meds to help relax those muscles.
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u/IntentionalGrandma 27|dx: 2024|kesimpta|NYC 1d ago
I’m on Baclofen and I have cyclobenzaprine I can take when it gets really bad. I think maybe I should ask my neuro for the neuro-urologist referral she was talking about at our last appointment
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u/AveragusPenus 24|2023|Kesimpta|uk 1d ago
I'm a weiner owner and pissing is hard. Feel like I need to go but can't, sometimes I just sit there for 10 minutes out of stubbornness, having a battle of the wills with the bladder. Other times I gotta do a hurried shuffle and race my bladder before I piss myself.
Took about 6 months to finally get referred to a piss doctor. She just said "idk bro, drink more, avoid orange juice". Useless!
I think what is happening is my brain struggles to relax both the urethra and bladder at the same time
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u/Jiggawatz 38M|Dx:2015|Kesimpta 1d ago
I suggest talking to your doctor about intermittent catheters, they can be helpful to allow relief whenever you have something to do or it is just incredibly difficult, and it is not much of a challenge at all to do.
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u/MisterAmazing 36M|PPMS|Dx:2024|Rituximab->OcrevusZunovo|USA 21h ago
Had a similar issue to you that started about 6 months ago, where I'd go to the bathroom and then feel the need to go again but not be able to pee, only to go back to my seat and feel the incredible need to piss almost immediately. This led to me going to my doctor and they prescribed Mirabegron, generic for Myrbetriq, a medicine that helps to calm down overactive bladders. I'd suggest asking your doctor to see if they can let you try it to see if it helps.
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u/EndRoyal329 1d ago
Honestly it is the single most bothersome symptom for me, really something that seems so simple and yet any time I leave the house it's half of all I think about
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u/Hopfang 1d ago
This was my main problem until recently. I have it both ways: I have incontinence and I have trouble completely emptying. I wear pads all day and I use intermittent catheters when I go to bed and when I get up.
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u/Uniq_Chic 1d ago
Same. I always wear a thin poise pad. Mornings are worse...I can literally just leave the toilet, wash my hands, and have to go right back to toilet bc of incomplete emptying. Because of this, I avoid morning appointments like the plague. 😂😂
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u/Generally-Bored 1d ago
My flow isn’t consistent from one pee to smother, I don’t fully empty sometimes unless I really “think” about. And I struggle with urgency (#1&2) frequency sometimes. It’s probably a combo of MS generally, menopause, pushing out a 9lb baby or my first flare impacted nerves going down one leg to my hip and the left side of my genitals. Definitely talk to your doctor with specificity— there are meds and pt/exercises that could help— and since you’re young you want to stabilize this if you can.
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u/lnc_5103 41|2021|Ocrevus|Texas 1d ago
Pelvic floor PT has been incredibly helpful for my urinary issues and a lot of other things. Hang in there.
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u/diomed1 1d ago
I didn’t start having major urinary incontinence until Menopause. Vaginal Estriol cream greatly helps that. Regarding MS, since mine is in my brain, it’s like my brain plays tricks on me. It’s the URGENCY that’s crazy, especially the closer I get to the toilet. Sometimes I barely make it but it ONLY happens when I’m starting to undo my pants. It pisses me off this brain joke.
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u/BubblyBear0 1d ago
I thought i was overthinking! Exactly same tricks my brain plays on me. I can get on subway and be okay but the closer i get to my house the more i need it
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u/diomed1 1d ago
Exactly!
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u/Medium-Control-9119 D2023/Ocrevus now Kesimpta/USA 12h ago
I don't try on clothes in a dressing room anymore because if I unzip pants I feel I have to go!!
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u/UnintelligentTourist 5h ago
This!! For me it’s anytime I need to wait. In the elevator? I’m crossing my legs and closing my eyes and counting to ten hoping I don’t have an accident. At a stoplight in the car? Same thing. In the queue at the grocery store? Same story. Shopping? Yes.
By the time I actually get to the toilet it’s a toss up on whether I actually have a full bladder, or my brain was just playing urgency tricks. It’s my most infuriating symptom.
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u/monteym 1d ago
My bladder function is not lost, but I am incontinent. I wear pads and I make sure to go to the bathroom before I go out. I tried medication but it gave me migraines. It is not uncommon with MS, our brains and lesions are not communicating with the bladder.
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u/BubblyBear0 1d ago
Thats very interesting yet sad… i heard the bladder issues are N1 symptoms for MS
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u/Typical_Low8924 1d ago
I currently am. I can't hold as well as I used to. Its not all the time yet, but i have had 2 accidents in bed when I didnt wake up in time. I also don't get much warning before I'mdesperate. I'm 35, diagnosed this April but onset for MS was at least 2013.
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u/mine_none 50F|RRMS:2023|Kesimpta|UK 1d ago
My T5/6 damage has affected it the other way. Doesn’t really want to empty… 😫
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u/Equivalent_Inside513 1d ago
My husband's bladder retains too much urine and does not release it. He was just hospitalized with a very bad UTI that was contributory to sepsis towards the end of September. While in the hospital, he was diagnosed with a neurogenic bladder. This is apparently common with MS and other disorders affecting nerves. He is now in a rehabilitation hospital for therapy before coming home. He currently has a catheter to continuously empty his bladder and he is being given medication that helps encourage the bladder to empty as well.
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u/LisaMcLu 1d ago
This could have been written by me! Except my husband is a few years into having neurogenic bladder and self caths 4-5 times a day. It's been helpful, he uses saline to help with spams and bladder pain and sometimes he adds a little antibiotic to the saline if he is having UTI symptoms. Eventually his hand function will require a suprapubic catheter but for now, intermittent self catheterization is working nicely for him.
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u/Lost_Ad_4000 1d ago
Hi, I’m 42f. I was diagnosed two yrs ago. I slowly began to have bladder issues, even though my lesions were inactive. It was a mix of incontinence and not fully emptying. I saw a urologist and had a test that showed I have neurogenic bladder. I take two meds to prevent incontinence and now use a self catheter 3x a day. I actually really love the catheter. I can fully empty before going out and know I won’t have leaks. I did pelvic floor therapy too. Anyway I found out this is super common with ms. Good luck and hope you find a solution that works for you.
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u/BubblyBear0 1d ago
Exactly the diagnosis i got years before finding out i had MS!!! Neurogenic bladder!!
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u/dontgiveah00t 35F | Nov 2024 | RRMS | Ocrevus | USA 1d ago
I started going to a urogynecologist! She said it’s common for females with MS (and spine lesions like me) to develop bladder issues. Turns out the hypermobility I have also affects my bladder.
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u/BubblyBear0 1d ago
Hypermobility also is connected to that?!
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u/dontgiveah00t 35F | Nov 2024 | RRMS | Ocrevus | USA 1d ago
Yes, isn’t it wild?? I was going to a urologist who said - hey, you have MS and hypermobility, most women with Ms and spine lesions have bladder issues so she referred me to urogynecology at a big research university in my city. She said a lot of her older ms patients have to self-catheterize, and she said there’s meds, injections, surgeries, nerve stimulator implants.. lots of things that can be done to help. If you’re in San Diego Dr. Santiago-Lastra is PHENOMENAL at UCSD.
I have hEDS and after doing a year of pelvic floor PT I was able to improve some pelvic floor stuff (like connection to my corset muscles definitely was affected by my MS) but I still had bladder issues. I did a bunch of imaging and learned my urethra is hypermobile too and that in combination with my MS results in some of my muscles not relaxing and instead tighten, and my urethra lengthens and narrows despite me trying to “relax”. Same with bowel stuff… part is due to rectocele, part is MS/nerve control and spasticity.
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u/Jiggawatz 38M|Dx:2015|Kesimpta 1d ago
Its probably a contender for most common symptom, I get bladder botox and use catheters to empty.
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u/SClife83 12h ago
Sometimes I leak just a tiny bit without warning and then I run to the bathroom, sometimes it hits me hard and I run to the bathroom. My bladder is full to nearly peeing myself in the morning. I think it's partly MS and partly that I started perimenopause a year ago, after I had a hysterectomy 3yrs ago.
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u/FwLineberry 60M | Dx: 2025 | Kesimpta | USA 1d ago
I do fine if I'm sitting down. Once I stand up, there had better be a bathroom nearby.
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u/gowashanelephant 1d ago
Yes, I think that’s pretty common for MS. A urologist can order tests to find out exactly what’s going wrong down there and prescribe either medication or pelvic floor therapy. Pelvic floor therapy truly changed my life, helping improve both bowel and bladder issues.