Blood in urine

Posted by sboddie @sboddie, Oct 19, 2022

I have been having large amounts of blood in my urine since April. I have flank pain burning and pain during urinating sometimes. They have done multiple cultures and nothing grows. I had a scope done and bladder looks good. My doctor ordered a urogram scared I have kidney cancer. No one can explain why I have these episodes of blood in urine. Has anyone had this same issue?

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The urogram sounds like a good way to investigate the cause of your hematuria (medical term for blood in the urine). I know this process causes a great deal of anxiety, as I have been through it. Have the urogram and get the results and go from there. Do NOT hesitate to get a second opinion. I got a second urologist opinion and THIRD opinion from a nephrologist just to be confident in my diagnosis and treatment plan. Try to stay focused (I know-it’s hard!) and remember this is YOUR health, so ask questions and get answers that are clear and concise to you. I also suggest keeping a written log of your day-to-day interactions with your health care providers for every encounter you have. When you’re stressed, it’s easy to forget what was said.

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@sboddie Welcome to Mayo Clinic Connect! You have gotten some sound advice from @sally0526 already. Having these symptoms since April is a long time! Have you been able to keep any type of a log as to when you experience this hematuria [day of the week, activity, foods you've eaten, etc] If you have other health issues going on, they might contribute to it, or medications being used.

How are you feeling with all this going on? I understand the anxiety. Thinking more about losing the blood, your energy levels, etc. Are you eating as healthy as you can, to keep your system performing as well as you can? If you are not satisfied with what your doctors are saying, do you have access to a large teaching hospital or Mayo Clinic? You deserve answers!

Here is what Mayo Clinic has to say about blood in your urine. It is a pretty informative article, and might give you some insight you hadn't considered. https://www.mayoclinic.org/diseases-conditions/blood-in-urine/symptoms-causes/syc-20353432
Ginger

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Yes!!! But mine was bladder cancer. Get an abdominal CT if you have not had one and keep up with your urologist. Don’t give up. They will get to the bottom of it. Hang in there.

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Yes I have, and it was bladder cancer. My initial Urologist almost missed the diagnosis, too. Not all facilities have good imaging equipment; when I had the cytoscopy repeated at Mayo in Phoenix, they found 3 tumors and CIS that the first Urologist missed.

Do not hesitate to get a second opinion, or even a third. How far are you from Mayo’s facilities in Phoenix, Jacksonville, or Rochester? If those are not feasible, contact the National Cancer Institute and ask for one of their accredited facilities; a university with a teaching hospital (Duke, University of Michigan) would also be a good choice. Don’t stop until you get an answer- hematuria is not “nothing” - there is an underlying cause.

Hang in there - we’ve all been in your situation and understand how scary it can be. Not knowing is the WORST - your mind goes all kinds of places that are not helpful. Please keep us posted on your progress.

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Three times had blood in urine that i could see and have pictures similar to the one posted; cannot recall exact first time, maybe 2002 happened a few times then stopped and the dr did nothing; 2nd time was around 2012 and it lasted almost every time I urinated and lasted five weeks, my family dr. referred me to urologist and it took 2 months for appointment and by then had stopped.... I took many photos of it; then last time was around 2020 when had bladder infection. Looking back I can't believe I just waited for help, although 2nd time the uroloigist did look inside bladder and report says saw nothing of concern! So what was it is my question also. I had cancer of cervix way back in 1985 which damaged my internal organs but this bleed has happened with years inbetween ??? One thing I did wonder about was that I used to take a fair amount of Aspirin and that and other medications can cause bleeding in bladder... I can look up and put on here if helps... am also going to read the above Mayo site quoted so maybe that will shed some light on what happened to me. When I have a uti, which is often, microscopic blood shows up on dip strip but the other times I could see it myself quite clearly and it was very frightening... still a mystery for me tho.

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When they did the cystoscopy, did they do a cytology exam of the cells from the washings?
What did that show?

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@ggarrepy

When they did the cystoscopy, did they do a cytology exam of the cells from the washings?
What did that show?

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Hi, I was not told much. I only have a copy of what the urologist told my family dr. in a letter, after the bleeding had stopped, that he couldn't see anything that would have causes the bleeding, all looked normal... he said I had mentioned taking more aspirin that usual re migraines.... i have photos of some containers with the red urine in and it is ruby red then lighter, then darker, but 5 weeks... i am not very pushy but should have just gone to emerge and sat there til someone did something maybe. I happened to be in a Toronto hospital duirng the 5 weeks having my yearly eye check, vitreous. and i told the ophthalmologist, he gave me a note to go right to see the uroglogist in the hospital but the secretary said as i had an appointment where i live in several weeks she would not accept..... how many times have secretaries/front office staff made these decisions? So as I said by time i saw one locally, no bleeding and i dont think he did any tests.... now wondering if could have come from kidneys but so many other body parts going haywire these days, i cannot keep up - did have some bleeding a few years ago but not as bad and, again, saw another urologist and he basically said cystitis ..... maybe from radiation years ago....
however, if it happens again i will ask more questions, thank you. ps i would put up some pics but kind of gross to look at!

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...sorry thought your comment was for me. Just found some old letters to dr and only thing one dr said was prominent veins inside bladder likely caused by pelvic radiation 1985, cancer cervix.... and nothing else. Guess will never know what caused the bleeding but did find some photos I had taken at the time and some very dark red and blood clots... so guess I will never know what it was and hope don't get it again.... I agree, keep pursuing until get answers, I didn't and wish I had! J.

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@lacy2

Hi, I was not told much. I only have a copy of what the urologist told my family dr. in a letter, after the bleeding had stopped, that he couldn't see anything that would have causes the bleeding, all looked normal... he said I had mentioned taking more aspirin that usual re migraines.... i have photos of some containers with the red urine in and it is ruby red then lighter, then darker, but 5 weeks... i am not very pushy but should have just gone to emerge and sat there til someone did something maybe. I happened to be in a Toronto hospital duirng the 5 weeks having my yearly eye check, vitreous. and i told the ophthalmologist, he gave me a note to go right to see the uroglogist in the hospital but the secretary said as i had an appointment where i live in several weeks she would not accept..... how many times have secretaries/front office staff made these decisions? So as I said by time i saw one locally, no bleeding and i dont think he did any tests.... now wondering if could have come from kidneys but so many other body parts going haywire these days, i cannot keep up - did have some bleeding a few years ago but not as bad and, again, saw another urologist and he basically said cystitis ..... maybe from radiation years ago....
however, if it happens again i will ask more questions, thank you. ps i would put up some pics but kind of gross to look at!

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I totally get it. You’re out of town. Other things happening too. Then the bleeding stops. Nothing is easy. I had to get a CT before the urologist would see me so if you see blood again, get a referral to urologist preceded by a CT. Keep your eye on this. You have to fight for yourself sometime. I did.

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@lacy2

Hi, I was not told much. I only have a copy of what the urologist told my family dr. in a letter, after the bleeding had stopped, that he couldn't see anything that would have causes the bleeding, all looked normal... he said I had mentioned taking more aspirin that usual re migraines.... i have photos of some containers with the red urine in and it is ruby red then lighter, then darker, but 5 weeks... i am not very pushy but should have just gone to emerge and sat there til someone did something maybe. I happened to be in a Toronto hospital duirng the 5 weeks having my yearly eye check, vitreous. and i told the ophthalmologist, he gave me a note to go right to see the uroglogist in the hospital but the secretary said as i had an appointment where i live in several weeks she would not accept..... how many times have secretaries/front office staff made these decisions? So as I said by time i saw one locally, no bleeding and i dont think he did any tests.... now wondering if could have come from kidneys but so many other body parts going haywire these days, i cannot keep up - did have some bleeding a few years ago but not as bad and, again, saw another urologist and he basically said cystitis ..... maybe from radiation years ago....
however, if it happens again i will ask more questions, thank you. ps i would put up some pics but kind of gross to look at!

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I took pictures too then I didn’t want to show them to anyone either lol. The culture and urinalysis confirmed the presence of blood so that was the evidence. Get a urinalysis right away next time you see a change in color. Then it’s documented.

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