Bladder chronic UTI and urgency

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

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Get a second opinion NOW. Make an appointment with another urologist, AND a nephrologist (kidney specialist). I got second and THIRD opinions and it turned out that my first doctors treatment plan was completely wrong for my condition. Be prepared to start over with tests etc. Also, don’t be afraid to SPEAK UP. Don’t let the “white coat” intimidate you. Take a list of symptoms and questions with you. Take notes and don’t leave until your questions are answered. This is your HEALTH and you need to be strong and get answers. Please keep us up to date on your progress. Those of us on this forum care and want you to be healthy!

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@sally0526

Get a second opinion NOW. Make an appointment with another urologist, AND a nephrologist (kidney specialist). I got second and THIRD opinions and it turned out that my first doctors treatment plan was completely wrong for my condition. Be prepared to start over with tests etc. Also, don’t be afraid to SPEAK UP. Don’t let the “white coat” intimidate you. Take a list of symptoms and questions with you. Take notes and don’t leave until your questions are answered. This is your HEALTH and you need to be strong and get answers. Please keep us up to date on your progress. Those of us on this forum care and want you to be healthy!

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Have you ever taken cranberry/d'mannose capsules for prevention of the UTIS?

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@sally0526

Get a second opinion NOW. Make an appointment with another urologist, AND a nephrologist (kidney specialist). I got second and THIRD opinions and it turned out that my first doctors treatment plan was completely wrong for my condition. Be prepared to start over with tests etc. Also, don’t be afraid to SPEAK UP. Don’t let the “white coat” intimidate you. Take a list of symptoms and questions with you. Take notes and don’t leave until your questions are answered. This is your HEALTH and you need to be strong and get answers. Please keep us up to date on your progress. Those of us on this forum care and want you to be healthy!

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It seems to me UTIs being not permanent cure, doctors become agitated when visited. I know mine is. Towards the end of my appointment, I tried to ask about cranberry/d'mannose she got up walk toward the door and said, "you have another uti go to urgent care". Her compassion is no longer. Did you know Mayo Clinic said they don't have enough Uro doctors to see for Utis? They turned me down from all three hospitals. Thank for the advice, Kathy

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@daphne52

It seems to me UTIs being not permanent cure, doctors become agitated when visited. I know mine is. Towards the end of my appointment, I tried to ask about cranberry/d'mannose she got up walk toward the door and said, "you have another uti go to urgent care". Her compassion is no longer. Did you know Mayo Clinic said they don't have enough Uro doctors to see for Utis? They turned me down from all three hospitals. Thank for the advice, Kathy

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My advice still stands. When someone posts that they are desperate and thinking about “not being here anymore” because they are suffering, I feel their pain too. Your doctor sounds like a jerk. Believe me, I have encountered plenty of doctors who dismiss my feelings, symptoms and desperation and just want me out of their face. Usually it’s because they are incompetent. You deserve better. You deserve answers. And you deserve a life not dictated by pain. Please consider getting a second opinion from another urologist (and a nephrologist). It sounds like something other than a UTI is going on and a good doctor will want to figure it out for you. Keep us updated. The people on this website care. Including me.

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@daphne52

It seems to me UTIs being not permanent cure, doctors become agitated when visited. I know mine is. Towards the end of my appointment, I tried to ask about cranberry/d'mannose she got up walk toward the door and said, "you have another uti go to urgent care". Her compassion is no longer. Did you know Mayo Clinic said they don't have enough Uro doctors to see for Utis? They turned me down from all three hospitals. Thank for the advice, Kathy

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Seriously? We’re not talking about a typical UTI. We’re talking about 20 UTI’s in 16 months starting with normal kidney function now in CKD stage 3b. These UTI’s cause struvite kidney stones which cause UTI’s which cause stones. I can’t get off this merry go round. This doesn’t warrant specialized skills? Kidney stones are noted to be the 2nd most painful event a human can experience. I’m so disappointed.

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@sally0526

My advice still stands. When someone posts that they are desperate and thinking about “not being here anymore” because they are suffering, I feel their pain too. Your doctor sounds like a jerk. Believe me, I have encountered plenty of doctors who dismiss my feelings, symptoms and desperation and just want me out of their face. Usually it’s because they are incompetent. You deserve better. You deserve answers. And you deserve a life not dictated by pain. Please consider getting a second opinion from another urologist (and a nephrologist). It sounds like something other than a UTI is going on and a good doctor will want to figure it out for you. Keep us updated. The people on this website care. Including me.

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Thank you for your fast response. I just sent a message of urgency to my doctor. I will tell her I need answers and want a second opinion. I cannot believe Mayo Clinic will not see me. Me saying, I'm giving up on life was at my lowest point. My comfort comes from my husband and he told me to get that out of my head and he can't lose me. Talking to you is comforting knowing someone besides me knows exactly the misery one goes through. Thank you so much.Kathy.

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@cyndip1122

Seriously? We’re not talking about a typical UTI. We’re talking about 20 UTI’s in 16 months starting with normal kidney function now in CKD stage 3b. These UTI’s cause struvite kidney stones which cause UTI’s which cause stones. I can’t get off this merry go round. This doesn’t warrant specialized skills? Kidney stones are noted to be the 2nd most painful event a human can experience. I’m so disappointed.

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My 2mm stone has been there several years and they will not take out. I don't even know if this is the cause of my pain, but my doctor does not seem to care. Chronic UTIS has taken over my life. My bladder pain is with or without UTIS. Thank you for your response

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@daphne52

Thank you for your fast response. I just sent a message of urgency to my doctor. I will tell her I need answers and want a second opinion. I cannot believe Mayo Clinic will not see me. Me saying, I'm giving up on life was at my lowest point. My comfort comes from my husband and he told me to get that out of my head and he can't lose me. Talking to you is comforting knowing someone besides me knows exactly the misery one goes through. Thank you so much.Kathy.

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You’re welcome. I’ve been in your position and the I know the desperation is overwhelming. My second opinion doctor took control and helped me tremendously. My third opinion doctor told me he agreed with everything my second opinion doctor was doing and his confidence made me feel like I definitely did the right thing by getting the second opinion. I’m glad you have the support of your husband. I have a great husband too and he has been there for me through all of this. Don’t be surprised if your current doctor is unhelpful with getting you a second opinion though. I’d go online and find a urologist not affiliated in any way with your current doctor and make an appointment on my own. Again, I want only the BEST care for you and you need answers and relief from the unrelenting pain. Stay strong and proactive and you will get through this.

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@daphne52

My 2mm stone has been there several years and they will not take out. I don't even know if this is the cause of my pain, but my doctor does not seem to care. Chronic UTIS has taken over my life. My bladder pain is with or without UTIS. Thank you for your response

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Is the stone in the lower pole of the kidney? Those have to fight gravity to pass. The ureter is 4mm so a 2mm should pass on its own. Struvite stones grow quickly due to the UTI giving them the building blocks they need. In July I had a 4mm and 7mm in left kidney. In December these same stones were 20mm and 24mm.
It’s not likely the stone is embedded with bacteria given its size. That doesn’t mean it can’t eventually occur. Keep an eye on the size.

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@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

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