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

REPLY
@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

Jump to this post

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

REPLY
@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

Jump to this post

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.

REPLY
@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

Jump to this post

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

REPLY

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

REPLY
@rosegirl1

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

Jump to this post

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??

REPLY
@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??

Jump to this post

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.

REPLY
@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.

Jump to this post

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

REPLY

Blood In Urine

My urine is very dark color, and urologist says there is blood in urine. The problem is that the source is unknown, and quite puzzling. I have had scans to no avail. Cystoscopy shows no lesion or tumors. I have had a series of urinary infections recently, with source of infection also unknown. Currently on a reduced dose of Bactrim to keep infection away. Does this condition sound familiar in any way? Any response appreciated.

REPLY
@nbrud

Blood In Urine

My urine is very dark color, and urologist says there is blood in urine. The problem is that the source is unknown, and quite puzzling. I have had scans to no avail. Cystoscopy shows no lesion or tumors. I have had a series of urinary infections recently, with source of infection also unknown. Currently on a reduced dose of Bactrim to keep infection away. Does this condition sound familiar in any way? Any response appreciated.

Jump to this post

Hi @nbrud, I'd like to welcome you to Connect. I can imagine that not having the answer to what is going on is puzzling. You'll notice that I moved your question to a discussion where another member is experiencing the same symptoms. What did your physician say that prescribed you the Bactrim?

REPLY
@nbrud

Blood In Urine

My urine is very dark color, and urologist says there is blood in urine. The problem is that the source is unknown, and quite puzzling. I have had scans to no avail. Cystoscopy shows no lesion or tumors. I have had a series of urinary infections recently, with source of infection also unknown. Currently on a reduced dose of Bactrim to keep infection away. Does this condition sound familiar in any way? Any response appreciated.

Jump to this post

Hi, @nbrud. Following up my posting above in August 2019, I hope my experience includes some comfort for you. First our differences. On my twice-a-year hematuria episodes, my urine turns light pink, not very dark. Nor have I had urinary tract infections. I had a large piece of prostate removed by a TURP procedure. My cystoscope results after that have been recorded regularly to ensure that the papillary tumors originally discovered have not returned. Finally that surgery was performed 12 years ago, but during the intervening period my only experiences have been regular cystoscope examinations and occasional hematuria. So your mystery and mine are similar in this respect: My urologists can't pinpoint where the blood is coming from, but advise that infection in the bladder and/or urinary tract often result in mild hematuria over time — it could be leakage from some of the many blood vessels in the area. When I originally noticed it, I made it an issue for each of my visits with my urology team, who advised me not to worry unless the blood in the urine becomes "frank" — undiluted and solid colored, hopefully red. So I have not worried, since my episodes have all been diluted blood. Adding to Amanda's question, how long have you been taking Bactrim? Could your hematuria be connected to Covid-19? Martin

REPLY
@predictable

Hi, @nbrud. Following up my posting above in August 2019, I hope my experience includes some comfort for you. First our differences. On my twice-a-year hematuria episodes, my urine turns light pink, not very dark. Nor have I had urinary tract infections. I had a large piece of prostate removed by a TURP procedure. My cystoscope results after that have been recorded regularly to ensure that the papillary tumors originally discovered have not returned. Finally that surgery was performed 12 years ago, but during the intervening period my only experiences have been regular cystoscope examinations and occasional hematuria. So your mystery and mine are similar in this respect: My urologists can't pinpoint where the blood is coming from, but advise that infection in the bladder and/or urinary tract often result in mild hematuria over time — it could be leakage from some of the many blood vessels in the area. When I originally noticed it, I made it an issue for each of my visits with my urology team, who advised me not to worry unless the blood in the urine becomes "frank" — undiluted and solid colored, hopefully red. So I have not worried, since my episodes have all been diluted blood. Adding to Amanda's question, how long have you been taking Bactrim? Could your hematuria be connected to Covid-19? Martin

Jump to this post

Thank you for your response. At this point the mystery remains. Urine is very dark color. No prostate issues that I know of. Bactrim is because of recurring UTI issues. I think I need to a more sophisticated urological facility, rather than a urologist in solo practice.

REPLY
Please sign in or register to post a reply.