A possible cause for unexplained gross hematuria

Hello, I am posting this information in the hopes of other people benefiting from my experience. I have had unexplained "hematuria" for over a year, which typically occurred in the morning. The urine color was very dark purple and it returned to normal color after about 2nd or 3rd time I urinate and stayed normal color throughout the day. Initially, the "hematuria" occurred at a frequency of 3 or 4 months, which then progressively became worse to the point of daily occurrence. I had no other symptoms other than fatigue, which later on became disabling. Over the course of over a year, I had seen my primary care physician, 2 different urologists, a nephrologist, gastroenterologist, and hematologist. I had 2 cystoscopies, 2 CT scans of the abdomen and pelvis area with and without contrast, colonoscopy, upper GI endoscopy, and even a bone marrow biopsy in my desperate efforts to find the cause for my intermittent and ongoing "hematuria". The results of all these tests were normal, and I was told I do not have bladder cancer, kidney stones, or urinary tract infection. My kidney function was fine as well, and I was also tested for some parasites, which was also negative. And yet, I continued to have intermittently dark purple urine color in the morning, which was very alarming. For anyone out there experiencing a similar problem, please ask the urologist or the primary care physician to order a microscopic urinalysis that specifically tests for presence of hemoglobin in your urine (some labs and the dipstick methods typically employed by physician's office or Urgent Care facilities will simply test for presence of blood, which is NOT specific enough to distinguish between hematuria vs. hemoglobinuria). This test is to determine whether you have true hematuria vs. hemoglobinuria. Hemoglobinuria is often misdiagnosed as hematuria, and it is caused by hemolysis or premature breakdown of the red blood cells in your body). If the test is positive for hemoglobinuria, please go see a hematologist so they can order the right tests for you to rule out a very rare blood disorder called, Paroxysmal Nocturnal Hemoglobinuria (PNH). This is a serious disorder, which requires an immediate medical attention by a hematologist. I have had such a frustrating, agonizing, and emotionally painful experience to finally get this diagnosis, and I hope and pray that other folks with similar problems can benefit and learn from my experience and save the heartaches, frustration, time, and emotional pain. May God bless you!

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