What's With My MS and Recurring UTIs?

By Dan and Jennifer Digmann

3 min read

“This is the end, my beautiful friend, the end.”

Every single time I have used the bathroom over these past seven days, I hear the Doors' Jim Morrison melodically sing these words. Perhaps I am being dramatic, but emptying my bladder has become a painful chore.

I urgently rush to the bathroom in hopes of fully voiding. Alas, there is nothing more than a few drops of urine. I pause, push, and take a deep breath. Still, nothing more leaves my body. I return to my wheelchair for a few moments and then the sensation of a full bladder returns.

Living with UTIs and MS

I think I have a urinary tract infection (UTI), and I fear that this is the end...the end of my bladder control as I know it. Sure, this UTI isn’t the first one I’ve had, but it doesn’t seem like it was that long ago that I was struggling with these same complaints.

Okay. I get it. Dan and I recently were on a road trip to Chicago – i.e., forced dehydration, so I didn’t have to use the restroom every hundred miles – but I’m home now and making a conscious effort to “get my water.” Plus, I used Botox to treat my neurogenic bladder a few months ago, so what gives?

There is no magic fix

Then I remembered that Botox was to help with controlling my bladder urgency and frequency. UTIs are, in some senses, my penance for not drinking enough water to dilute my urine. Besides, I never imagined Botox would put an end to all of my urinary issues.

In fact, according to the National Multiple Sclerosis Society, bladder dysfunction like I’m experiencing occurs in nearly 80% of the population of those of us living with MS.¹

My bladder fears

Bladder problems and the need to use a catheter to empty my bladder have been among my biggest fears since I was diagnosed with multiple sclerosis a little more than 25 years ago. Back then, I worried a catheter would be uncomfortable, painful to insert, or a sign that my MS was progressing.

I now live each day knowing that my disease has progressed to secondary progressive MS, and my fear now is due to my extremely limited mobility and dexterity. And yes, I’m still a little concerned about possible pain related to the catheter.

I’m not there yet, I hope. But should I cue Jim Morrison here? Is this the end of my usual bladder routine? What is my urologist going to say to me at my upcoming appointment? Do I have a reason to be concerned? Is all hope gone?

Yes, those were my thoughts as I rolled into my urologist’s office last week.

Making a plan with my urologist

I relayed my concerns to her. I actually had written down a list of my questions, which I have found is a good idea and an effective way to make the most of my limited time at any doctor's appointment. She listened to and answered them all. By the end of my visit, we agreed that I needed to continue taking my Hiprex prescription and plan for another Botox injection in February.

Tips for better bladder control

I followed up my appointment by reading some tips to help manage incontinence and to use for better bladder control. Actions to help me with my bladder function include:¹

Maintaining a healthy weight
Drinking plenty of water
Performing pelvic floor exercises
Quickly treating constipation
Limiting caffeine consumption

These tips remind me that they, along with my Hiprex prescription and Botox, are the beginning, not the end.

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.

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Therry Neilsen Moderator & Contributor
I too have recently moved past the use of Hipprex to stave off frequent bladder infections. I'm seeing a Pelvic Floor Physical Therapist to address my weak pelvic floor muscles. Of course constipation is a further complication. Plus I'm 75, and have had MS for 45 years. so you see! HOWEVER, My Pelvic Floor Physical Therapist has added quite a few tools to my armamentarium (look it up!) to fight bladder dysfunction. First she added a good heavy dose of Vitamin c to my Methenamine Hippurate (generic Hipprex) regimen. Then she added D-mannose, a type of sugar that binds to E. coli bacteria and prevents the bacteria from attaching to the bladder wall and causing an infection. She suggested a treatment called Uqora (<a href='https://uqora.com/' target='_blank' rel='noopener noreferrer ugc'>https://uqora.com/</a>) which strengthens the bladder wall, adds a good dose of D-mannose to the system, and adjusts the vaginal flora to keep infections at bay. We also recently added a dose of vaginal estrogen to the system. And I have to say that my last UTI was treated effectively with Macrobid, an older antibiotic that is particularly effective against E. coli infections. And it only took ten days with Macrobid to get rid of the infection! I'm greatly encouraged, although it does seem like a lot of work to keep my bladder in line, but hey, who said MS was going to yield to anything, much less vigilance and hard work? Jennifer, talk to your urologist about Uqora and vaginal estrogen. They can help, but CEASELESS VIGILANCE is the order of the day. I always sign my moderator comments with "In solidarity, Therry, a Team Member" but when it comes to frequent UTIs, you KNOW you've got my undying support!
1. Therry Neilsen Moderator & Contributor
 And a member of the support team at Uqora heard from a comment that I was using Methenamine Hippurate in addition to the Uqora regimen, and she kindly commented on their blog that the problem was that Methenamine Hippurate only performs its magical transformation (turns your urine into Formaldehyde and staves off infection) when the urine is consistently acidic. Problem is that regular use of Uqora turns your urine BASIC as opposed to Acidic (who remembers the litmus test, whereby you determined the pH of a substance? Science fair time!) and BASIC urine doesn't react with Methenamine Hippurate to become Formaldehyde, thus negating its therapeutic properties. Hey, don't look at me funny, I'm not a urologist, I'm just obsessed with correct urinary function and am personally keeping the Poise company in business!