Hi, my name is Helene and I am 48 years old.

I have been in constant pain since September 25, 2003 and have gone through numerous tests to find out why I have so much pain on my right flank and have gross hematuria.

It took my going to another city to see a nephrologist who cared enough to take the time to ask questions and not look at me as if I was a nut case and it was all in my head.

The nephrologist in my home town basically told me that I would not bleed to death and that I should consider pain management counselling. My last visit with him was dibilitating in itself as he accused me of letting other doctors know that he had suggested some possibilities of what I might have but he had never followed up on any of them. He was more concerned about his reputation than my health.

I am relieved to have a name to my pain and suffering, which in itself will help me in dealing with the pain. It is hard to live everyday not knowing if you are causing yourself further harm by what you ingest or the work you do. I was able to put those thoughts to rest. I have been advised by the nephrologist that I should continue to live my life to the fullest and eat/drink what ever I want.

The other suggestion he had was to go on a pain medication to be able to get through every day without too much discomfort. IF things do not change in the next 2 years, then I should consider getting an assessment by a physician who performs "Auto-Kidney transplant" as this may be the only answer to relieving my pain.

I am interested in any help with others who have the same disorder and may be able to help me deal with it.