Repeat urinary tract infections: What can I do?

Posted by birdntroutlady @birdntroutlady, Mar 27, 2012

I am having repeated urinary tract infections with a variety of bacteria cultured. I have just learned I have fibromyalgia. I need help and don't know who to see. I was also exposed to a lot of mold (Cladosporium, Aspergillus) when I was teaching school. I have retired, but the UTIs have not.

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@amandajro

Hello @daphne52 and welcome to Mayo Clinic Connect. It may be helpful to share a bit more, if you're comfortable, so that some connections to members may be made.

Can you share more about the rare bacteria UTIs you have and how long you've suffered from this?

Also, I am wondering if you have had any intervention/care for your non-obstructed kidney stones and how long you've been living with that as well.

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I have utis on the average of 3 to 4 times a year for about 18 years. It all started after a vaginal hysterectomy. I was told I don't have IC, but my doctor did several years ago do an ice water instilliation and it did work for almost a year. Over the years the utis were mostly Ecoli, but in the last few years, I get rare bacteria. Over the years I had 3 Urethra scopes and found nothing bad. My urologist sent me to pelvic floor physical therapy at least 3 times over the years, sometimes it works, sometimes not. Utis and pelvic floor pain have almost same symptoms and sometimes I wait too long and the uti is raging, that itself can be serious. I have a 4 mm nonobstructed kidneystone and my Uro Doc says if there is no pain, don't worry. I have been doing some nvestigative reading myself and found an article of a 72 year old woman with a nonobstructed small kidneystone that was infected with the same rare bacteria I now get. She has recurring utis also. The article never really said what the outcome was, but what if this kidneystone is infected and passes the bacteria to my bladder and bringing on recurring UTIS. I'm miserable and at times feel is life worth living. I just need a doctor who is more understanding. It seems he is now pushing me off to the NP in his office. I hope I have not rambled too much and I do thank you for answering my comment. If there are people out there that can enlighten me on this condition, I will sure be willing to hear of any options available. I have considered seeing a Mayo Clinic doctor. I have a friend that traveled fron Cincinnati Ohio to Florida wih numerous health problems and gave her all the right answers. I'm becoming desperate. Thank you for listening.

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@daphne52

I have utis on the average of 3 to 4 times a year for about 18 years. It all started after a vaginal hysterectomy. I was told I don't have IC, but my doctor did several years ago do an ice water instilliation and it did work for almost a year. Over the years the utis were mostly Ecoli, but in the last few years, I get rare bacteria. Over the years I had 3 Urethra scopes and found nothing bad. My urologist sent me to pelvic floor physical therapy at least 3 times over the years, sometimes it works, sometimes not. Utis and pelvic floor pain have almost same symptoms and sometimes I wait too long and the uti is raging, that itself can be serious. I have a 4 mm nonobstructed kidneystone and my Uro Doc says if there is no pain, don't worry. I have been doing some nvestigative reading myself and found an article of a 72 year old woman with a nonobstructed small kidneystone that was infected with the same rare bacteria I now get. She has recurring utis also. The article never really said what the outcome was, but what if this kidneystone is infected and passes the bacteria to my bladder and bringing on recurring UTIS. I'm miserable and at times feel is life worth living. I just need a doctor who is more understanding. It seems he is now pushing me off to the NP in his office. I hope I have not rambled too much and I do thank you for answering my comment. If there are people out there that can enlighten me on this condition, I will sure be willing to hear of any options available. I have considered seeing a Mayo Clinic doctor. I have a friend that traveled fron Cincinnati Ohio to Florida wih numerous health problems and gave her all the right answers. I'm becoming desperate. Thank you for listening.

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It sounds to me like you don't feel confident in the care you are receiving and that is a very helpless feeling. If that was my experience, I would seek another opinion to validate my feelings and better understand how another provider would treat me and my symptoms.

Are you closer to MN, FL, or AZ if you were to consider requesting an appointment at Mayo Clinic?

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I am currently on my third UTI this year. I have no idea how I get those, because I have a Bidet and do not use paper for wiping. I had a small kidney stone 3 yeas ago, but that seemed to have been gone last year, because it could not be found with ultrasound. I will see they Mayo Clinic (Rochester, MN) urology department in early September, and hope that they can come up with a solution.
I live in SW Florida, but travel each year to Minnesota to have Mayo docs take care of my health care needs.

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I pray you get answers. Please update your Mayo Clinic visit in September. I am going through the same thing and any info will be greatly appreciated.. Thanks.

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@amandajro

It sounds to me like you don't feel confident in the care you are receiving and that is a very helpless feeling. If that was my experience, I would seek another opinion to validate my feelings and better understand how another provider would treat me and my symptoms.

Are you closer to MN, FL, or AZ if you were to consider requesting an appointment at Mayo Clinic?

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I'm from Cincinnati Ohio and the closest would be Minnesota and Florida. Is getting an appointment as simple as just calling and making an appointment, or do I have to go through my Primary Doctor? I believe my preference would be Florida.

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@lindes

I am currently on my third UTI this year. I have no idea how I get those, because I have a Bidet and do not use paper for wiping. I had a small kidney stone 3 yeas ago, but that seemed to have been gone last year, because it could not be found with ultrasound. I will see they Mayo Clinic (Rochester, MN) urology department in early September, and hope that they can come up with a solution.
I live in SW Florida, but travel each year to Minnesota to have Mayo docs take care of my health care needs.

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Do you feel Minnesota helped you better? Reading that your are from Florida I'm wondering why you didn't go the Florida?

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@daphne52

Do you feel Minnesota helped you better? Reading that your are from Florida I'm wondering why you didn't go the Florida?

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I lived in Minnesota, and am a patient there for close to 35 years. I know my docs (I also did some medical research work together with the Mayo), and know the system up there.
I feel that I get the best possible health care up there, I don't even want to experiment with unknown facilities.

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@daphne52

I have utis on the average of 3 to 4 times a year for about 18 years. It all started after a vaginal hysterectomy. I was told I don't have IC, but my doctor did several years ago do an ice water instilliation and it did work for almost a year. Over the years the utis were mostly Ecoli, but in the last few years, I get rare bacteria. Over the years I had 3 Urethra scopes and found nothing bad. My urologist sent me to pelvic floor physical therapy at least 3 times over the years, sometimes it works, sometimes not. Utis and pelvic floor pain have almost same symptoms and sometimes I wait too long and the uti is raging, that itself can be serious. I have a 4 mm nonobstructed kidneystone and my Uro Doc says if there is no pain, don't worry. I have been doing some nvestigative reading myself and found an article of a 72 year old woman with a nonobstructed small kidneystone that was infected with the same rare bacteria I now get. She has recurring utis also. The article never really said what the outcome was, but what if this kidneystone is infected and passes the bacteria to my bladder and bringing on recurring UTIS. I'm miserable and at times feel is life worth living. I just need a doctor who is more understanding. It seems he is now pushing me off to the NP in his office. I hope I have not rambled too much and I do thank you for answering my comment. If there are people out there that can enlighten me on this condition, I will sure be willing to hear of any options available. I have considered seeing a Mayo Clinic doctor. I have a friend that traveled fron Cincinnati Ohio to Florida wih numerous health problems and gave her all the right answers. I'm becoming desperate. Thank you for listening.

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Why don’t you ask to have the stone pulverized?

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@daphne52

I'm from Cincinnati Ohio and the closest would be Minnesota and Florida. Is getting an appointment as simple as just calling and making an appointment, or do I have to go through my Primary Doctor? I believe my preference would be Florida.

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Hello, @daphne52, @lindes and all. I'm dealing with multiple and serious UTI's , 4 so far this year, one I ended up with sepsis, one in ED with 1 ending in sepsis, another with protein levels over 800, and RBC, multiple off the charts infections….I was in ED for 3 infections. The last one with the high proteins, etc, I was referred to nephrology and saw doctor within 3 days. I go to Mayo Jax, live in Jacksonville. I am so blessed to be seeing these doctors.

I first went to the Jax Mayo in 2019 during a long, difficult recovery from heart failure and other issues, including an erroneous MS diagnosis for 12 years.

Mayo doctors have saved my life, both literally and figuratively. Heart's doing well. Edema is under better control now after several providers help.

The doctors in ED were very concerned about the protein levels and had a CT to ck for stones. No stones. But, every indications was kidney disease. Nephrology ordered multiple blood tests and urinalysis, including 24 hour urine tests. I had these test after finishing a long course of antibiotic. I had several bags of IV antibiotics in ED. As I did previously with sepsis.

I was also referred to infectious disease. He put me on 500mg Keflex 2x daily, ongoing. Since, I developed intestinal issues and stopped the Keflex for now. An MRI for headaches I began having the last several months, severe including ear/right side …..

Infectious disease referred me to ENT. I had sinus endoscopy, CT and found a serious sphenoid infection that probably picked up in a hospital stay and is very antibiotic resistant. Using antibiotic, steroid saline nasal spray for about a month, then surgery to remove infected tissue, infected bone and etc.

He also referred me to rheumatology. Best move ever. He believes I had an underlying immune reason causing the multiple infections. DX: vasculitis-autoimmune disease of the small vessels throughout the body, all the organs! Not good. Also, pulmonary fibrosis, pulmonary hypertension probably due to sever obstructive sleep apnea, I now have RBC in urine w/o infection, so my organs are bleeding, the small vessels are deteriorating, not getting blood where it needs to go. Not a good thing. But, because of the inquisitive minds of the Mayo doctor and staff and the mayo system, I'm getting all these issues dx and will have treatments for whatever can be treated.

Mayo and I have hope. HOPE.

So, if you are having the issues you seem to have, I'm an example of reasons for you to run to Mayo. I can attest to the excellence of the Jacksonville Mayo. I have a feeling all the Mayo facilities are among the best, I know my doctors are among the best.

I pray you will be blessed as have I with the good care and help and guidance and will find the causes of your problems. Causes and treatment and healing.
Blessings.
Elizabeth

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@daphne52

I'm from Cincinnati Ohio and the closest would be Minnesota and Florida. Is getting an appointment as simple as just calling and making an appointment, or do I have to go through my Primary Doctor? I believe my preference would be Florida.

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You can call yourself to make appointment in any area or for general medicine.

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@happy2bhear

You can call yourself to make appointment in any area or for general medicine.

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@happy3bhear, @lindes, @daphne52 and all
In 2019, after again being told I had MS but with no treatment and no further help, I called the Mayo Jax main number and asked for an appointment. I think Amanda @amandajro and Colleen Young @colleenyoung can give you direct numbers and advise you on these issues. They are Connect and Mayo experts with all the answers.

Most of us are regular patients like me. Many whom I've met on these groups have helped me immensely with understanding the illnesses through the interesting variety of groups. I've actually made 'friends' online whom I'll never meet but feel like we can share anything. What a marvelous and important part of healing to have these folks ready and available and wanting to share their experiences and suggestions. This has truly saved my emotional and mental health! I'm very alone and have so enjoyed finding these folks. Another Mayo gift! I'm not alone any longer which has made an enormous difference in my attitude toward life, living today and dealing with tomorrow as it arrives.

I hope you get your appt soon with the perfect doctor to help you where you are now. You can see I hope the benefits of getting to a system such as Mayo. I've had these experiences with Mayo and ended up probably finding diagnoses in other areas that will save or extend my life and definitely have already improved my quality of life.
Blessings to you. May your road be filled with light and healing.
elizabeth

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@happy2bhear

Why don’t you ask to have the stone pulverized?

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I'm not sure I can request it when my Doc says if there no pain it OK to leave it. The problem is it could actually be my pain and uti problem. He doesn't like patients playing doctor.

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