My Bladder Urgency and Pain are Sometimes Caused by Infection, but not Always

By Kim Dolce

3 min read

Two of the many symptoms MS patients can experience are bladder urgency and pain. The feeling that you have to go again right after peeing. Constant pain down in the lower abdomen that won’t go away, or it burns every time you pee, or you have persistent back pain, or a combination of these. Maybe you feel the urgency to pee but when you try to, you can’t get it going. I’ve had all of these symptoms off and on for years.

My first urinary symptoms and treatments

The first time it happened I felt urgency with hesitation and had to drink a lot of water to get it going. Once it did, it burned. Then the sphincter muscles would spasm right after I was done peeing. A urine culture tested positive for bacteria, and I was diagnosed with a UTI (urinary tract infection). My primary care doc prescribed a 10-day course of Bactrim and that cured it. I also discovered that antibiotics give me a vaginal yeast infection, so I was prescribed a dose of fluconazole to cure that, too.

Fighting frequent infections

In the years since, every time I was prescribed an antibiotic, I automatically asked for a dose of fluconazole along with it. I had infections so frequently that eventually I was given a reserve supply of Bactrim. I could use it as a prophylactic by taking one pill an hour before having sex since that activity could bring on the symptoms. I could also use the reserve to self-medicate a ten-day course if my symptoms came back, eliminating the need to call my doc, go to a lab to give a urine sample, and wait for the results and prescription. This worked well for me. But after a few years, Bactrim stopped working. In the meantime, I started seeing a urologist, who then switched me to Cipro. This worked very well too until it didn’t.

A bout of urgency, burning, and sphincter spasms

In January 2020, I had a bout of urgency, burning, and sphincter spasms and took Cipro, but the symptoms came back. After two more bouts of symptoms and Cipro, it was clear that I was failing Cipro now, too. But something else was happening. I had urine cultures for subsequent episodes, and they were negative for infection. We medicated with Cipro anyway. Then things took another turn.

Visual and auditory hallucinations

Four months later in April 2020, I tried to pee and couldn’t, even though my bladder was full. I tried to self-cath but couldn’t find the opening. I went to bed and had night terrors, sending me out to the living room to pace and have visual and auditory hallucinations. These symptoms can be caused by infection. I saw my urologist, who catheterized me and drew 300 mL of dark urine. She diagnosed me with neurogenic bladder and dehydration. Again, the urine culture was negative for infection. She instructed me to drink tons of water and take Azo, an over-the-counter symptom med that quiets bladder pain and urgency. I did both and the symptoms disappeared. I could also pee normally again.

Dehydration or another infection?

Since April, I’ve had several bouts of urgency, burning, and bladder irritation. I’ve been treating them with Azo and drinking tons of water. I didn’t bother reporting it to my doctor and getting a urine culture, that is, until a few days ago. The symptoms were coming back more and more often, so often that I thought this time I might actually have an infection. My test results came back positive for enterococcus. I was prescribed a 7-day course of Amoxycillin.

If you have similar symptoms, please contact your medical team right away. Testing is very important since these symptoms could have a serious cause.

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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suek Member
My bladder issues began well before I was dxd. This may have been my earliest sign of MS. My first UTI at age 14 led to a double kidney infection landing me in the hospital. Through the years I had frequent UTIs, cystoscopes, and more rounds of various antibiotics than I can count. That is what led to “super bugs”. Next came kidney stones brought on by Topamax. They really should warm you about this risk. Blasted, most passed but several fragments stayed behind. I was assured they would not cause problems and most likely would either dissolve or pass. Time passed, and the UTIs continued, as well as a couple of kidney infections to keep things interesting. The last one drove my fever up to 106 F. Then two years ago I ended up with eight large kidney stones completely blocking the flow of urine causing it to back up. This led to sepsis with a “super bug” that refused to respond to most antibiotics. The infusion I received was referred to as chemical warfare, the second strongest antibiotic chemo combo available. A month later I went to have the stones blasted and removed and low and behold they were colonized with the “super bug” bacteria. I developed sepsis again which nearly killed me. I was on the same infusion I had in the hospital at home for several months. Since then I have had nonstop UTI. My body seems to be harboring it. There is no treatment unless things get bad enough that I land in the hospital again. I live on Azo pills and probiotics in hopes of building up immunity to this monster naturally. UTIs are viewed by most as a mere nuisance, nothing to be concerned with. But for those of us with MS, it can quickly become a matter of life and death. Please take them seriously! See a Urologist that specializes in neuropathic bladder. You’ll be glad you did.
elh518 Member
I too was having frequent UTIs as my SPMS progressed. I also have allergies to multiple antibiotics besides the fact that all antibiotics raise havoc with you body. After some research, learned about D-Mannose, a undigestible sugar that bacteria attaches to and flushes them out. I take 3 daily, it helped a lot but still had 3-4 UTIs a year. My urologist suggested trying Ellura, a medical grade cranberry supplement. I take daily and have not had a UTI in over a year. No more antibiotics wrecking havoc with my body. I do take an extra D-Mannose before and after sex just too clear out any bacteria. Hope this helps!
1. Kim Dolce Moderator & Contributor
 <inline-mention user-id="3985085" username="elh518"/> . Thank you so much for those suggestions. I haven't heard of D-Mannose or Ellura. I'm glad those supplements have helped you!
josephrob Member
The biggest problem I have had is no time to react to my bladder or bowell, This can be incredibly embarassing. I would end up pooping in my pants. No warning at all just pants full of poop!!!!