1. < Bladder Conditions
Profile picture for daphne52

I have chronic UTI with constant urgency: What helps?

Posted by daphne52 @daphne52, Apr 3, 2023

I suffer from chronic UTI with constant urgency with or without an UTI. I try to deal with the UTIs, but the pain I have when I have any amount of urine in my bladder is taken up my whole life and wellbeing. My URO doc throws nothing but Meds at me and sends me out the door that do not work. Please Please, anyone give me some direction or advice because I am thinking thoughts of not being here anymore. I AM DESPERATE. I do not have IC. Thanks, Kathy

Interested in more discussions like this? Go to the Bladder Conditions Support Group.

Profile picture for daphne52
daphne52 | @daphne52 | Apr 10, 2023
In reply to @daphne52 "You are not alone. I am 70 and to think this may be my what I..." + (show)
Profile picture for daphne52 @daphne52

You are not alone. I am 70 and to think this may be my what I have left of my life has me anxious beyond words. My husband said if I could I would take it from you. Thank goodness, for him. Now catheriz

Jump to this post

Now catherization and afraid to do it. I have tried every position and no easy way to do it, especially me being 70 and trying to maneuver my body when it is resisting. So sorry for what you are going through. Having chronic Utis is a miserable life. 🙏

REPLY
Profile picture for lucy155
lucy155 | @lucy155 | Apr 11, 2023

@daphne52 your story is very similar to mine. Frustrating doesn't begin to expressed the feeling that come with chronic, unexplained, extremely painful UTI's. I've had 12 in 10 months. I have a new Urogynocologist, who seems to CARE about finding a solution. She prescribed self-cath for me after my first appointment after removing 550cc's of urine in her office. I could not pass water at all. Self-cathing is very strange, uncomfortable, but is a "tool" in my tool kit for emergencies. I have a thread here on Mayo. I just finished a course of Leviflaxen and will begin a daily low-dose Macrodantin to "try" to prevent further infections. Best wishes. I'm 70 and this UTI stuff l really impacts quality of life.

REPLY
1 reply
Profile picture for daphne52
daphne52 | @daphne52 | Apr 11, 2023
In reply to @lucy155 "@Daphne52 your story is very similar to mine. Frustrating doesn't begin to expressed the feeling that..." + (show)
Profile picture for lucy155 @lucy155

@daphne52 your story is very similar to mine. Frustrating doesn't begin to expressed the feeling that come with chronic, unexplained, extremely painful UTI's. I've had 12 in 10 months. I have a new Urogynocologist, who seems to CARE about finding a solution. She prescribed self-cath for me after my first appointment after removing 550cc's of urine in her office. I could not pass water at all. Self-cathing is very strange, uncomfortable, but is a "tool" in my tool kit for emergencies. I have a thread here on Mayo. I just finished a course of Leviflaxen and will begin a daily low-dose Macrodantin to "try" to prevent further infections. Best wishes. I'm 70 and this UTI stuff l really impacts quality of life.

Jump to this post

Wow, we are the same age and exact same bladder problems. My doc also started me on Macrobid 50mg. I am trying to convince myself the daily antibiotic is needed and then I read people said it can cause cliff. I know I have to take the chance, if I want to get better. Are you down to only several antibiotics working? I pray we both find the solution to getting better.

REPLY
Profile picture for lucy155
lucy155 | @lucy155 | Apr 11, 2023

@daphne52 - I've been on daily antibiotics of various types, but I have not been successful in the five years of trying. For instance I already had 90 pills of microdantin in my medicine closet! Didn't need the new prescription. I want to give this doctor a chance at solving my problem, so I'll begin the regimen of daily microdantin and see if it works for this Klebsiella bacteria. Klebsiella has come back EVERY time within 1-3 weeks of being treated with various drugs.... bactrim, Keflex, Augmentin, cipro. As far as getting C-diff, I don't believe the low dose daily antibiotic will hurt me. I had a ruptured colon and was on 1600 mg of Augmentin for 45 days!!! No side effects for me. I was worried, but had no choice. No c-diff, no side effects. I'm trying the microdantin. Keep me posted on your journey!

REPLY
Profile picture for gnocchi
gnocchi | @gnocchi | Sep 26 5:13pm
In reply to @cehunt57 "@daphne52 (Kathy ?) I’m jumping in here regarding UTI (urinary tract infections) and kidney / bladder..." + (show)
Profile picture for Cheryl, Volunteer Mentor @cehunt57

@daphne52 (Kathy ?) I’m jumping in here regarding UTI (urinary tract infections) and kidney / bladder stones. I’ve experienced this and it is miserable. In your situation it sounds like it is excessive and persistent. @sally0526 and @cyndip1122 have made some good suggestions regarding second /third opinions and possible treatments. What concerns me most is your statement about feeling DESPERATE and “having thoughts about not being here”. Serious physical problems involving pain such as yours have a way of wearing you down emotionally and mentally. It is time (yesterday) to find the professional providers you need (physically, mentally, emotionally, spiritually). Often a friend or family member (your husband?) can be helpful in advocating for you. As others have said, “You are not alone”. My hope and prayer for you is that you find the help you need and can start looking forward to better tomorrows.
Cheryl

Jump to this post

@cehunt57

Say I am almost 83 and still fighting these UTIs - my urologist which is 70 miles away didn't respond to my request for Methenamine and all communication is through text messages. So, in disgust I went to our open clinic and asked if possible I could talk to my primary care doctor's nurse. I asked her if he could prescribe this as it is not an antibiotic but is more of an antiseptic that tries toward warding off bacteria, etc. Anyway, she got back to me right away. Yes, he will. I am still on Macrobid for 10 days and googled it and AI says not to take this Methenamine until you finish your current antibiotic as they react. Anyway, day 5 and have 5 more days - side effects are not the greatest - loose stools etc - stopped my Miralax for now. Anyway, the rudeness this urologist had but not getting back to me - I should not dwell on this as there is hope in 5 days and wondering if you took Methenamine and if you did how were the side effects and did it work? Anyway, I'm at a bad age - almost 83 and my husband died last year and the worst thing is being sick and alone. I'm trying to ride these side effects by eating bland foods but I PRAY that this new med will help. My pharmacist looked me eyeball to eyeball and said "it works." Have you tried it???? And if anyone has tried it - did it work and were the side effects okay? I worry about this and am tired of living - lonely is one thing but being sick and lonely sucks - never been alone ever in my life. My two kids have been great and there for me thankfully.

Anyway, sorry to go on and on but hoping someone will read my post and answer me about this antiseptic med and if it worked and hopefully not bad side effects. Have incontinence too and tried the Oxytrol patch and it started working when I got dizzy and called my pharmacist and he said it can cause dizziness especially in elderly people so I took it off and it went away. Not going to try any other incontinence drugs - side effects are worse. Will just be a house hermit for now. Thank you for listening. God help us all.

REPLY
2 replies
Profile picture for tootall10
tootall10 | @tootall10 | Sep 27 6:32am

I don't want to be presumptive but have you tried cranberry juice. My wife gets UTIs and it works and it doesn't need a prescription.

REPLY
1 reply
Profile picture for nestruck
nestruck | @nestruck | Sep 27 6:55am
In reply to @gnocchi "@cehunt57 Say I am almost 83 and still fighting these UTIs - my urologist which is..." + (show)
Profile picture for gnocchi @gnocchi

@cehunt57

Say I am almost 83 and still fighting these UTIs - my urologist which is 70 miles away didn't respond to my request for Methenamine and all communication is through text messages. So, in disgust I went to our open clinic and asked if possible I could talk to my primary care doctor's nurse. I asked her if he could prescribe this as it is not an antibiotic but is more of an antiseptic that tries toward warding off bacteria, etc. Anyway, she got back to me right away. Yes, he will. I am still on Macrobid for 10 days and googled it and AI says not to take this Methenamine until you finish your current antibiotic as they react. Anyway, day 5 and have 5 more days - side effects are not the greatest - loose stools etc - stopped my Miralax for now. Anyway, the rudeness this urologist had but not getting back to me - I should not dwell on this as there is hope in 5 days and wondering if you took Methenamine and if you did how were the side effects and did it work? Anyway, I'm at a bad age - almost 83 and my husband died last year and the worst thing is being sick and alone. I'm trying to ride these side effects by eating bland foods but I PRAY that this new med will help. My pharmacist looked me eyeball to eyeball and said "it works." Have you tried it???? And if anyone has tried it - did it work and were the side effects okay? I worry about this and am tired of living - lonely is one thing but being sick and lonely sucks - never been alone ever in my life. My two kids have been great and there for me thankfully.

Anyway, sorry to go on and on but hoping someone will read my post and answer me about this antiseptic med and if it worked and hopefully not bad side effects. Have incontinence too and tried the Oxytrol patch and it started working when I got dizzy and called my pharmacist and he said it can cause dizziness especially in elderly people so I took it off and it went away. Not going to try any other incontinence drugs - side effects are worse. Will just be a house hermit for now. Thank you for listening. God help us all.

Jump to this post

@gnocchi Vaginal estrogen.

REPLY
Profile picture for mayo99824
mayo99824 | @mayo99824 | Sep 27 8:26am

I probably replied before since this is a long thread. I had recurrent UTIs 40 years ago. The urologist did a procedure in the hospital and I have never had another UTI. Has your doctor considered widening your ureter so you can fully drain? I am 70 now and have some leaking but do not regret it if that was the price for 40 years of no UTIs.
PS. You are valuable. Your experience is valuable. You may feel lonely but you are part of a community and every part is important and valuable.

REPLY
Profile picture for gnocchi
gnocchi | @gnocchi | Sep 27 8:28am
In reply to @tootall10 "I don't want to be presumptive but have you tried cranberry juice. My wife gets UTIs..." + (show)
Profile picture for tootall10 @tootall10

I don't want to be presumptive but have you tried cranberry juice. My wife gets UTIs and it works and it doesn't need a prescription.

Jump to this post

@tootall10 I take a cranberry TheraCran which is supposed to be the best.

Right now am hoping this Methenamine will help me - an antiseptic not an antibiotic that pharmacist - just would like to hear from someone here who takes this and hoping the side effects are okay. This is my only hope. Thanks for trying to help me.

REPLY
Profile picture for anthemal
anthemal | @anthemal | Sep 27 9:59am
In reply to @gnocchi "@cehunt57 Say I am almost 83 and still fighting these UTIs - my urologist which is..." + (show)
Profile picture for gnocchi @gnocchi

@cehunt57

Say I am almost 83 and still fighting these UTIs - my urologist which is 70 miles away didn't respond to my request for Methenamine and all communication is through text messages. So, in disgust I went to our open clinic and asked if possible I could talk to my primary care doctor's nurse. I asked her if he could prescribe this as it is not an antibiotic but is more of an antiseptic that tries toward warding off bacteria, etc. Anyway, she got back to me right away. Yes, he will. I am still on Macrobid for 10 days and googled it and AI says not to take this Methenamine until you finish your current antibiotic as they react. Anyway, day 5 and have 5 more days - side effects are not the greatest - loose stools etc - stopped my Miralax for now. Anyway, the rudeness this urologist had but not getting back to me - I should not dwell on this as there is hope in 5 days and wondering if you took Methenamine and if you did how were the side effects and did it work? Anyway, I'm at a bad age - almost 83 and my husband died last year and the worst thing is being sick and alone. I'm trying to ride these side effects by eating bland foods but I PRAY that this new med will help. My pharmacist looked me eyeball to eyeball and said "it works." Have you tried it???? And if anyone has tried it - did it work and were the side effects okay? I worry about this and am tired of living - lonely is one thing but being sick and lonely sucks - never been alone ever in my life. My two kids have been great and there for me thankfully.

Anyway, sorry to go on and on but hoping someone will read my post and answer me about this antiseptic med and if it worked and hopefully not bad side effects. Have incontinence too and tried the Oxytrol patch and it started working when I got dizzy and called my pharmacist and he said it can cause dizziness especially in elderly people so I took it off and it went away. Not going to try any other incontinence drugs - side effects are worse. Will just be a house hermit for now. Thank you for listening. God help us all.

Jump to this post

@gnocchi - I have been on Trimethoprim 100mg daily for a couple of years due to recurring UTIs. Recently, a new urologist prescribed Methenamine along with vitamin C. I tried this, but didn't stay on it. It caused my bladder to feel like it was burning which was very uncomfortable. I went back to Trimethoprim. Perhaps your experience will be different and I hope it will be as you try to find a solution that works for you.

REPLY
Please sign in or register to post a reply.