Sorry about this being so long, I don't know where to turn right now other than here.
I have had kidney issues since I was 3 years old, that infection I remember it like it was yesterday, the pain was so bad that I couldn't stand. Have had many kidney stones, had one blasted out, blood in my urine quite often, several times so much blood that you wouldn't even know that the substance was urine, it looked like pure blood, many UTI's, kidney failure 3 times on blood tests and 2 times resulted in hospital stays, many times unexplained side pains at the emergency room to find nothing wrong. When I was pregnant, my blood pressure and sugars were horrible, I had to give myself insulin shots 4 times a day, eventually I was taken to the hospital to control it, my kidneys were failing, they took them out early, at 33 weeks. My kidneys are scarred pretty badly, it says on most of my tests over the years, I have been to a urologist here, he could never find the reason this kept happening to me. He would be in the room and out as fast as he came in, I asked him numerous times to help me find out why this kept happening to me! Well last weekend I went in the the emergency room and the doctor told me two times that I had Polycystic kidney disease and that there wasn't anything they could do for me that wasn't already being done. I have polycystic ovarian disease, at first I thought that was what he said. He blamed my pain on gas and constipation ( which I know for sure is NOT true) and told me to get ahold of a kidney specialist, that he would put the number etc. on my paperwork. He did an abdominal cat scan, said there was a 3 mm kidney stone in my kidney and that my pain was caused from gas and constipation. I asked him about the PKD, because by then it had sunk in and he was very confused that I had no idea what he was talking about. He again said yes, you have PCOS and PKD. He wouldn't answer any questions I had about it after that. When I got home, I checked the paperwork, but it said nothing about my kidneys at all. No number to a doctor he recommends... nothing! He put on it that I was treated for constipation and gas! I went to get all of my records since I am tired of getting no answers and I want to take them to a specialist. Since the emergency room papers say nothing about PKD my doctor office won't refer me to a specialist. While I was reading cat scans and Ultrasounds, they said twice that I have medullary Sponge Kidney and mentions numerous times about Echogenic renal pyramids, lots of stones etc, but nothing about tumors on my kidney. I am still having left sided pain and occasionally the right side also. I see blood a few times a week and this been has been going for months! There is PKD in my family, the only one that we know of was my great grandmother, she died from complications at 37. My younger sister has kidney issues also. I am very confused as to what to do now!? I can't get recommended to a specialist for this, I need answers! What can I do?