Gross hematuria (blood in urine): Can't find cause

Welcome, @carolak. I added your post to the Kidney & Bladder support group as well. You might find some posts in these related discussions helpful:
- Scared. Gross hematuria, urethral stricture and bladder thickening https://connect.mayoclinic.org/discussion/scared-gross-hematuria-urethral-stricture-and-bladder-thickening/

- Almost pure blood and blood clots in urine
https://connect.mayoclinic.org/discussion/almost-pure-blood-and-blood-clots-in-urine/
There are so many potential causes for blood in urine from UTIs to resulting from a biopsy for prostate cancer, from kidney stones to bladder cancer and many more.

What investigations has your urologist done? What conditions have they ruled out? Have you had any recent changes in medication or health issues?

No new meds.
No infections
Ct scans are clear
Cystoscope shows nothing
No fever no pain
Just lots of bright red blood when urinating and sometimes I will get a gush of blood and feel I need a pad.
No uterus
This is going on 19 days… everyday and nearly everytime I urinate.

Iga nephropathy?

Need kidney biopsy for dx

I use to have lots of gross hematuria in my teens and through my 40s especially after colds, flus, infections, stomach flu, then for no reason at all. Then later from kidney stones. Then poof symptoms disappeared. I was told in my 30s I would need transplant in my 40s. I had acute kidney failure twice in one month secondary to pylo with profuse hematuria but never needed transplant yet. still doing just fine now. Lead a boring life of no drugs, alcohol and I totally limit nsaids and acetaminophen. I use topical nsaid like voltaren if absolutely needed and something called PEA for pain relief.

You must see a nephrologist, kidney specialist, who is different than a urologist. There are kidney disorders of all kinds that can cause hematuria and you need a thorough evaluation by a kidney specialist ASAP. Your urologist should be able to recommend someone and provide results from your tests thus far to avoid repetition. Good luck and keep us posted on what you find out please.

I also had blood in urine for 4 days. I have had a hysterectomy 30 years ago. Have MM went to express care no infection, was given antibiotics. My oncologist put in to see a urologist. I also see a Nephrologist. It was very bad and now I'm wondering if it was my kidneys. I wil be seeing the urologist soon I guess he will let me know.

Hi I understand your frustration. I’m now going on over 24 days of daily blood in urine. It actually stopped for about 3 days and now back again. They have suggested this angiogram ? Of kidney but after reading about them I’m concerned about doing that. I’ve heard they rush that iodine in your kidney artery and sometimes it causes kidney failure. There has to be a way to figure all this out. Hang in there and let me know how things go.

Ask them to test for CAD
Cold Agglutnun Disease
Very rare only 5,000 cases in the US.
My friend was diagnosed because of the blood in her urine.
Good Luck

Thank you for that suggestion. Do you know how long she had the hematuria? Or any other symptoms or tests she had prior to this discovery. ??

She has Raynard's disease and her hands were really red…then she noticed the blood in her urine if I remembered correctly. It all happened qyickly. Like she said the dictors
look for the “horse” and CAD is the zebra

I apologize for my typos.
Quickly and Doctors is what I meant to type!
And Zebra should have has quotes around it.
The point being that the doctors need to dig deeper when they can’t initially determine the cause of excessive bleeding. My friend’s CAD is under control.