Okay this is going to be long, but I thought I'd toss this out there and see if anyone ever had something similar and was able to nail down a cause.
Since last March I have had almost chronic UTIs...i.e. while I'm on the antibiotic, no problems of course. Then there's a 2 week reprieve, and boom another UTI. I have to have it cultured every time because it has been different bacteria (some of them rarer ones that are hard to get rid of), and I end up having to change med mid stream when they get the culture back. (Doesn't help that I'm allergic to the main UTI drugs like Levaquin, Bactrim, and Macrobid.)
The frustration comes when I've been told what to "try" by the urologists and they're sure they know the solution to the problem, so I follow their instructions to the "t" and I still get the UTI.
I've seen urologists sort of moving up the ladder to more specialized urologists. Still no solution.
Had every test I could have. At first they assumed it was because I was retaining (and I do during a flare), so it was decided I should cath (which I did)...then they did the urodynamics and said I really didn't need to cath according to the test, but do it once a day at bedtime...now they're saying the the infections must be from self cathing (I buy expensive disposible caths out of my own pocket to minimize infection and use meticulous hygiene) and seem to forget I had the same problem before I cathed.
Latest specialist said to quit using the test strips, and just go by my symptoms. Trouble is a lot of times I don't have normal symptoms of a UTI. So I quit using test strips, and it all backfired because instead of catching it early, I woke up with one today and I could hardly move my legs...used a test strip, yep bad UTI, and had to go sit in a walk-in for 2 hours so the urine can be cultured...I have antibiotics on hand, but can't take them until I get a sample for a culture (if I don't catch the coughing bug, it'll be a miracle, the waiting room was filled and all those poor little kids were so sick with that awful coughing bug going around .)
I've had urodynamic tests, CT scan of my kidneys, MRI of my adrenals and kidneys, some kind of IVP type scan...but it was higher tech than an IVP (can't remember the name.) Even had bladder fulguration, under no anesthetic...OUCH!
Tried antibiotics for different lengths of times...once took antibiotics for a month. I take Methenamine Hippurate, every day which is an "ancient" form of antibacterial that the neurourologist suggested. Always have a culture run to make sure what infection I have. I've tried D-mannose, Vitamin C, Cystoproteck, Estrace cream, Luveena (a vaginal probiotic), regular probiotics, unsweetened cranberry juice, and no matter what I do, I deal with the 2 week cycle, I have a UTI exactly 2 weeks after I stop antibiotics.
I've had a couple prolapse surgeries, and wonder if that could be causing problems from all the mesh used to get things in their right place (unfortunately another "gift" from MS everything prolapsed due to muscle weakness.) But the urogyn and the neuro urologist said that's not the problem. I'm still wondering if there's a fistula or something that's causing this cycle.
So if anybody's ever had frequent UTIs and have found a cause that is out of the ordinary, or a treatment I haven't tried, I'd love to hear it
Since last March I have had almost chronic UTIs...i.e. while I'm on the antibiotic, no problems of course. Then there's a 2 week reprieve, and boom another UTI. I have to have it cultured every time because it has been different bacteria (some of them rarer ones that are hard to get rid of), and I end up having to change med mid stream when they get the culture back. (Doesn't help that I'm allergic to the main UTI drugs like Levaquin, Bactrim, and Macrobid.)
The frustration comes when I've been told what to "try" by the urologists and they're sure they know the solution to the problem, so I follow their instructions to the "t" and I still get the UTI.
I've seen urologists sort of moving up the ladder to more specialized urologists. Still no solution.
Had every test I could have. At first they assumed it was because I was retaining (and I do during a flare), so it was decided I should cath (which I did)...then they did the urodynamics and said I really didn't need to cath according to the test, but do it once a day at bedtime...now they're saying the the infections must be from self cathing (I buy expensive disposible caths out of my own pocket to minimize infection and use meticulous hygiene) and seem to forget I had the same problem before I cathed.
Latest specialist said to quit using the test strips, and just go by my symptoms. Trouble is a lot of times I don't have normal symptoms of a UTI. So I quit using test strips, and it all backfired because instead of catching it early, I woke up with one today and I could hardly move my legs...used a test strip, yep bad UTI, and had to go sit in a walk-in for 2 hours so the urine can be cultured...I have antibiotics on hand, but can't take them until I get a sample for a culture (if I don't catch the coughing bug, it'll be a miracle, the waiting room was filled and all those poor little kids were so sick with that awful coughing bug going around .)
I've had urodynamic tests, CT scan of my kidneys, MRI of my adrenals and kidneys, some kind of IVP type scan...but it was higher tech than an IVP (can't remember the name.) Even had bladder fulguration, under no anesthetic...OUCH!
Tried antibiotics for different lengths of times...once took antibiotics for a month. I take Methenamine Hippurate, every day which is an "ancient" form of antibacterial that the neurourologist suggested. Always have a culture run to make sure what infection I have. I've tried D-mannose, Vitamin C, Cystoproteck, Estrace cream, Luveena (a vaginal probiotic), regular probiotics, unsweetened cranberry juice, and no matter what I do, I deal with the 2 week cycle, I have a UTI exactly 2 weeks after I stop antibiotics.
I've had a couple prolapse surgeries, and wonder if that could be causing problems from all the mesh used to get things in their right place (unfortunately another "gift" from MS everything prolapsed due to muscle weakness.) But the urogyn and the neuro urologist said that's not the problem. I'm still wondering if there's a fistula or something that's causing this cycle.
So if anybody's ever had frequent UTIs and have found a cause that is out of the ordinary, or a treatment I haven't tried, I'd love to hear it
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