Have hematuria. Trying to find cause.

Posted by rosegirl1 @rosegirl1, Dec 18, 2018

Been having hematuria since 2015
I have been to 4 urologist
Sometimes bacteria in culture and sometimes not
Any body else deal with this? Trying to find cause. No pain or burning
Had uteroscopy stents in for 4 weeks than doctor went to the renal pelvis to look for anything suspicious. Found nothing wrong
It was awful pain the whole time on left side. Had 2 cyscopy scoped also. Prior to the uteroscopy

Hello @rosegirl1. Your hematuria sounds familiar (although mine involves my prostate not a uterus). Perhaps you have seen my two main points in another Mayo Connect discussion:

1) After prostate and bladder surgery, I have had episodes several times a year for four years. From the beginning, my urologist has told me not to worry much about the blood unless it is "frank" — that is, undiluted by the urine and bright red — in which case, I should get urgent or emergency care right away. In my case, the blood has always been diluted, thankfully.

2) Two urologists and two nephrologists all told me that it's not unusual that veins leak in prostate and bladder tissue that has been disturbed by mechanical surgery. Eventually (in my case, after four years), the bleeding will stop, they said.

Bacteria? As I understand it, they show up to some degree from time time in everybody's urine.

You will want to raise these issues with your own doctors — all of them — so that you reach a stable, unanimous understanding of what the problem is. Best wishes. Trust your medical team, but get answers the are satisfactory to you. Martin

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@predictable

Hello @rosegirl1. Your hematuria sounds familiar (although mine involves my prostate not a uterus). Perhaps you have seen my two main points in another Mayo Connect discussion:

1) After prostate and bladder surgery, I have had episodes several times a year for four years. From the beginning, my urologist has told me not to worry much about the blood unless it is "frank" — that is, undiluted by the urine and bright red — in which case, I should get urgent or emergency care right away. In my case, the blood has always been diluted, thankfully.

2) Two urologists and two nephrologists all told me that it's not unusual that veins leak in prostate and bladder tissue that has been disturbed by mechanical surgery. Eventually (in my case, after four years), the bleeding will stop, they said.

Bacteria? As I understand it, they show up to some degree from time time in everybody's urine.

You will want to raise these issues with your own doctors — all of them — so that you reach a stable, unanimous understanding of what the problem is. Best wishes. Trust your medical team, but get answers the are satisfactory to you. Martin

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I have white cells also in mine. I will be going to my 5th urologist. When I do this I have to be put on antibiotics, or I will get sick. My hematuria is in intermittent. I see than I do not. I must have something rare

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@rosegirl1

I have white cells also in mine. I will be going to my 5th urologist. When I do this I have to be put on antibiotics, or I will get sick. My hematuria is in intermittent. I see than I do not. I must have something rare

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Hi @rosegirl1 I have had a benign hematuria since I was a young girl. I am now 65 years old. My kidney function is below normal, but with continuous oversight and a biopsy, it shows I am doing well. I have been diagnosed with sarcoidosis which led to a heart transplant two years ago. Auto-immune diseases are able to affect the kidneys and cause all sorts of weird things. Sarcoid is an auto-immune condition. I am a bit anemic – just tenths of a percent below normal, but all blood tests show nothing wrong. I do not have white blood cells, but I have none to spare, as my anti-rejection meds cause a decrease in their numbers.
I wish you the best with the next urologist and perhaps they can test or explore the idea of an auto0immune condition.

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@rosegirl1

I have white cells also in mine. I will be going to my 5th urologist. When I do this I have to be put on antibiotics, or I will get sick. My hematuria is in intermittent. I see than I do not. I must have something rare

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Well, @rosegirl1, I can understand why you are tempted to think you have a rare condition. That's a natural conclusion when one becomes ill repeatedly under similar conditions. I'd feel the same way, and I'd want to get a handle on the root cause of the bacterial infection. In particular, I'd want to find a way to phase out the use of antibiotics, which too often are a doctor's way of treating the symptoms and ignoring the basic cause. When you see your new urologist, I hope you'll have a list of a half-dozen or more questions you'd like answered — questions that are based on detailed descriptions of the symptoms you mentioned. Will you be able to give your new urologist documents and reports from the prior examinations and treatments you've had so that the full picture can come into focus? I hope you can get on the trail toward the treatment you need with a doctor who's willing to help you be confident that your condition is stabilized and under control. Martin

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Yes I have all my documents and cd. Thanks for replying

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@rosegirl1

Yes I have all my documents and cd. Thanks for replying

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I see you wrote this quite awhile ago. I am new to this website. I saw your post about blood in your urine. You may have an answer by now. But, I wanted to let you know, I also have microscopic amounts of blood in my urine every time I do a urine collection. I have been told it is because I have medullary sponge kidneys. That was diagnosed years ago, after wondering why I have this, as well as repeated UTI's. About 20 years later I started passing kidney stones, and realize I have several in my kidneys. The one I am most concerned about it 9 mm in my left kidney. I was just wondering if you have been tested for medullary sponge kidneys??

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@spiritofsuperior

I see you wrote this quite awhile ago. I am new to this website. I saw your post about blood in your urine. You may have an answer by now. But, I wanted to let you know, I also have microscopic amounts of blood in my urine every time I do a urine collection. I have been told it is because I have medullary sponge kidneys. That was diagnosed years ago, after wondering why I have this, as well as repeated UTI's. About 20 years later I started passing kidney stones, and realize I have several in my kidneys. The one I am most concerned about it 9 mm in my left kidney. I was just wondering if you have been tested for medullary sponge kidneys??

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I have had microscopic hematuria ever since I went thru menopause. I have had every test in the books trying to find a cause – there is none. I was told that since my estrogen levels are to the point of being non-existent, this causes the tissue to thin and allows traces of blood to leak thru the fragile tissue. It is quite common in menopause and post menopause. My urologist recommended topical estrogen cream which is quite safe because all it does is replenish the tissue locally which helps with recurrent UTI. Hope this helps.

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@fotula

I have had microscopic hematuria ever since I went thru menopause. I have had every test in the books trying to find a cause – there is none. I was told that since my estrogen levels are to the point of being non-existent, this causes the tissue to thin and allows traces of blood to leak thru the fragile tissue. It is quite common in menopause and post menopause. My urologist recommended topical estrogen cream which is quite safe because all it does is replenish the tissue locally which helps with recurrent UTI. Hope this helps.

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Hi, @fotula. Sorry to hear of your quandary about hematuria, and despite being of a different gender than you, I hope you'll take some comfort from knowing of my experience. Tissues in my urinary system were thinned mechanically — I had a large piece of my prostate removed — about 10 years ago. Twice a year since then I have experienced hematuria for a few days. It is more than microscopic, turning my urine to a light pink color and occasionally forming a blood clot. But all three of my urologists since then have agreed with me that no medication or surgery is needed because — as in your doctor's view — the remaining tissues have thinned allowing blood to leak through into my bladder. I had my annual bladder cystoscopy examination two weeks ago and got a clean bill of health from my urologist — no tumors or growths of any kind and satisfactory efficiency in urine removal. If you see some reassurance in my experience, that's good, and I hope your concerns about the hematuria will abate with the help of your urologist. Martin

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