My bladder problems are resurfacing after years of treatment
Bladder hyperactivity and urgency are common and difficult symptoms of MS
Note: This column describes the author’s own experiences with oxybutynin. Not everyone will have the same response to treatment. Consult your doctor before starting or stopping a therapy.
A few years ago, I spent the summer at my mom’s apartment because I’d been living in college dorms and my semester had ended, so I couldn’t stay on campus. That summer, I began having bladder problems associated with multiple sclerosis (MS), but at the time, I didn’t know its cause. I thought it was all in my head. I was still early on my MS journey, so I wasn’t aware of the vast number of symptoms that could affect me.
I remember the day my bladder problems started. That day, I realized I was using the bathroom more than normal, but I didn’t pay it any mind because I thought I was just overly hydrated. The next day, I started to pay attention to the frequency of my trips to the bathroom, because they were becoming more constant. When my mom came home that day, I told her about it, and she reassured me that everything would be OK. We had no idea that it was because of MS.
I started getting frustrated, so I started to count the number of times I went to the bathroom. It was about 20 times in a five-hour period. I felt like I was losing my mind, because I didn’t know what was happening. So I did what most people do: I visited my good friend, Google, where I was shocked to learn that bladder problems are a common symptom of MS. Who knew? I certainly hadn’t.
Luckily, I had a routine appointment with my neurologist a couple days after these events occurred. My doctor prescribed oxybutynin, which is used to treat overactive bladders. Once I started taking this medication, I felt instant relief, and it made my bladder feel normal again.
Ever since this symptom started to appear, I’ve been diligent about staying hydrated and reducing my intake of caffeine and sugary drinks. Additionally, whenever I’m in public, I always make sure to find the nearest bathroom and identify a clear route to it. Adapting to bladder hyperactivity and urgency has been difficult, though, because sometimes the feeling is overwhelming. But making these small changes has helped to ease my mind.
Oxybutynin has made a significant difference over the years, but I feel its effectiveness starting to diminish. I’ve noticed a slight change just in the past week. Needless to say, it’s been extremely frustrating, because the hyperactivity and overwhelming urgency make it challenging to complete daily tasks and rest comfortably.
As always, I immediately notify my neurologist when a symptom changes or a new one appears, so hopefully, we’ll be able to adjust my medication and try a different one. These changes serve as a personal reminder to stay connected with my body and mind, which allows me to effectively recognize when something feels off.
Note: Multiple Sclerosis News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Multiple Sclerosis News Today or its parent company, Bionews, and are intended to spark discussion about issues pertaining to multiple sclerosis.
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Ruth Snyder
I was on medication but it made my mouth dry. And I started having tooth problems - decay, etc. Much expensive dental work done. Now I am off medication and I get Botox injections in my bladder every 6 months. It really helps.
Jane
I was first on that, also prescribed by my neuro. Then I found that one of the side effects can be dementia. My mother had that so it was high on my radar. I had to see a urologist and asked him. He said that was the last medicine he would prescribe. He put me on myrbetriq which I love. It's pricy but it works like a charm. I suggest you visit a urologist for something else to try.
Lisa Cunningham
I've had bladder problems almost since the beginning of my MS journey 30 years ago, treating it with oxybutynin. My neurologist prescribed Myrbetriq about 5 years ago when the Oxybutynin didn't control my problems. The Myrbetriq allows me to sleep through the night. Then 6 months ago, I stopped the Oxybutynin and started Trospium. Long term use in Seniors can cause cognitive changes and I am now considered a senior. It appears that you have made the lifestyle changes, so wishing you the best in your MS journey.
Mare Moran
Please update on the medication changes when they occur, and good luck!!
Carla Feigal
I have bladder problems and used doxazosin mesylate. I now have suprapubic catheter. I have to go in and have it changed monthly. It gives me freedom to get out and be on public. I cannot be independent because I cannot change it myself. But my loving husband, and caregiver changes it for me.
It is worth looking into
Cynde Route
My suprapubic catheter has been life-changing. I have had MS for 33 years, and I went from Oxybutynin to Myrbetriq to Botox to Axonics. Eventually, all of the treatments failed, and I got a suprapubic catheter. Honestly, I wished I'd known about it years ago. I could have avoided years of anxiety.
Mark Fritz
Go see a Urologist. I am on generic Toviaz (Fesoterodine) and Gemtesa (vibegron).
Gemtesa has been a miracle for me but may be expensive depending on your insurance. There is no generic yet.
Ask for samples before starting a prescription.
Glenda
I just wanted to let everyone with MS know that treatment with oxybutynin can cause heat exhaustion; be wary,
Ellen Lerner
I’ve had urgency and over active bladder for sometime now. What works for me? Most of the time I take two drugs an alternateevery other day. One is Solfinicin and the other was Mrybetric which very recently became generic so at least it’s a little cheaper. So for the most part they work although sometimes I have urgency and I wear an always pad almost every single day just in case I can’t make it to the bathroom in time.
Tom A
I had those early in my MS career. Had a few "situations" happen. Then it faded. Some experts call that "reserve"- you have enough ability of something remaining to compensate for the loss. But that often fades with time also, they say. If you’re a man with BPH, that may increase retention, so you have more time (that's me). I stopped oxybutynin when I learned there was a relation with dementia, but maybe the association is because older people take it more frequently (?). It wasn't a life saver for me. There are supposed to be second generation, much better treatments. Check your friend Google- "Second Generation Bladder Meds". I just wear Depends now when I go out and don't know if I'll have access to a bathroom. MUCH easier. Also, I know you want to stay hydrated, but there is a relation. Maybe lower intake strategically.
JENNY MAGGIORE
Desiree, I can definitely relate to the bladder issues that you describe. What complicates matters for me is that I am 65, with PPMS. A few years back, my urologist prescribed Myrbetriq, which worked great, until my insurance company decided that they would no longer cover it. They offered to cover Gemtesa instead, the only other drug in the same class as Myrbetriq. Fine. I switched to Gemtesa. It worked OK and I took it for about 2 years, until my insurance company decided that they would no longer cover it either. This time, they offered no alternative. Wow.
Incontinence is the one problem that makes me feel the most miserable. My male urologist wasn't very helpful either; his solution was to "just wear a pad." Really? With a thong? And who wants to smell like urine?
Tom A
A little late, but... nobody has been sticking their nose down there with me. My wife is ultra sensitive to anything like that; she's like my "alarm", and it has never gone off. We are taught all sorts of stuff when we are little kids to get us to learn to use the toilet. You have to give up all that stuff later when you get MS and just do what you have to.
Michelle Marsh
I recently became aware of the use of botox for overactive bladder. It works great for me. I've had MS for over 30 years so my bladder was not working the way it should. I'm very happy for you that you found out you had MS so quickly. That's an unusual symptom to get diagnosed from. Hope things get better for you.
Mary
Oxibutrin has a side effect, cognitive issues. Cognitive issues are also part of MS. There are other meds to help with bladder issues that don't carry that side effect.
Maureen O'Donnell Garrison
Have you ever been told about a bladder stimulator? ( Medtronic ) Was a lifesaver for me. Control my bladder as well as prevents UTI
Diane baumgart
Thank you for writing on bladder issues. I will contact my neurologist today. Did not realize there is medicine for this.
I live in Minneapolis and take classes via zone sponsored by MS Clinic at Swedish Medical Center. The classes are great. I take a writing, music, and chair Pilates classes. Theses and more open to anyone with MS
Bruce D Pollard
next time you have the problem, ask the urologist to take an ultrasound to see how much urine you are retaining.
I was retaining a lot and when I relieved the retention with regular use of a catheter I didnt feel the urge so often and stoppoed leaking.
Of course everyone is different and I am a guy which changes the architecture.
Els
Oxybutin was not the only bladder medicationt. Talk to your neurologist and ask for something different. Or talk to a urologist. You do not have to suffer.
Laurie Warner
Oxybutynin causes dementia. There are other excellent medications out there for bladder spasms. Consider switching. None of us need any more problems.
Kathy
I have found bladder Botox treatments very helpful.
Susanne Jones
My neurologist’s assistant told me I must have a UTI. So basically dismissed it my concerns and my condition! I only get to see my neurologist once a year the rest of the time I see her assistants and it’s never the same one twice.
Kathleen Allen
I have been on medication to treat spasticity with my bladder since 2000. I just learned that most meds to treat spasticity with the bladder will cause/may cause dementia. When I phoned my uro- gyneacologist to ask about this, what was repeated to me was that Oxybutynin was the WORST!! I am now on Myrbetriq & supposedly, it is the only med that does not have these concerns. Check it out!!