Thank you all for the good advice. As for a seeing a Nephrologist, I will have to be referred. I cannot make an appointment on my own. I could not even get an appointment with a Urologist on my own, referal only.
I need to clear up a few things.
My hematuria is not everyday or even every other day or even more than once a day.
I have had hematuria 1x for 1 voiding about 14 months ago after exercise.
The next episode was in May of this year. 1x on Saturday and 1x on Sunday after strenuous exercise.
The last episode was this past Monday morning. 1x after a hard workout.
I really do not think the ibuprofen/aspirin is a factor. I have taken ibuprofen and aspirin since the episode in May with no bleeding. I think that is a coincidence.
I have also exercised with no bleeding. The episodes of GH seem to happen when I am doing an activity that gets my heart rate very high. Since my kidney is wrapped around my aorta this could be contributing to the hematuria.
From my research of Horseshoe Kidney in the event of an "Isolated Horseshoe Kidney about 1/3 of patients are asymptomatic. When symptoms are present, they are usually related to hydronephrosis, infection, stone formation or Hematuria."
It is possible that the Hematuria is from my Horseshoe Kidney. Also, as in mznoregrets case the time frame from her hematuria to diagnosis was about 3 months even though they saw nothing on the first scan or cysto. In my case it had been over 8 months since my first episode and I had a clear cysto and imaging. Would the cancer not have show up by then or the Hematuria gotten worse?? I am not grasping at straws. I am going to get to the bottom of this. But, I do not think that every case of Hematuria necessarily means that you definitely have cancer.
I am going to see my Urologist again and see what he says and ask about a referral to a Nephrologist and take it from there.
Mimi