Hi I am a 27yr old Female suffering from bladder and kidney reflux aswell as severe kidney problems .I have been going through this disease for 6 years now. It started off as severe continual kidney infections which I was hospitalised for each time and doctors could not explain why I was continually getting infections. The infections were always in my left hand side Kidney which always showed on ultra sounds as large and swollen ( Hydronephrosis). I was then hospitalised with severe pain on the left hand side flank pain ( front kidney pain) whicChatDoctore up on an ultrasound and CT scan as a Large PUJ Obstruction( a kink in ureter tube which is the tube that comes of your kidney and joins to your bladder) I had numerous stents put in to release obstruction which was only a temporally fix as I was getting infections in stents. I was then booked in by a urologist to have a pleyoplasty surgery done on my left hand kidney. At this time my right hand kidney only had a mild case of Hydronephrosis on it and a propionate renal pelvis with no PUJ Obstruction on it so the concentration was mainly on my left hand kidney. The pleyoplasty went well and urologists were convinced that my condition was fixed. Exactly to the day a year after my surgery my left hand completely obstructed again and I was hospitalised 7 times to the emergency department with extreme pain in 2 weeks I had multiple scans and nuclear medicine studies done which showed my left hand kidney completely obstructed they then booked me in for a ballon dilation which was unsuccessful and I was in the public hospital system as I had no health insurance so waiting times were very long I was put on very high pain killers to get me through the day and waiting times I then reached out to a different urologist which rushed me in for a procedure which inserted a camera inside my bladder and kidney to have a look they also inserted another stent and booked me in for yet another pleyoplasty which this time was a larger operation. This operation was not successful and I was told that my left hand kidney had to be removed I was devastated but I knew it had to be done. I was ok for about 6 months after the removal then the same things started happening to my remanding kidney but it was obstructing and releasing they were stumped I was in and out of hospital all the time with severe fluid retention and pain. I was hospitalised for 3 weeks to have numerous tests done to find out why this was happening. I had a urodyamics test done which shows the pressure in your bladder and how you empty your bladder. It was then I was diagnosed with a rare bladder condition which doesn t have a name all I was told is I have extreme pressure in my bladder and when I go to the toilet I only empty a 1/4 of what is in my bladder and the rest reflux back up into my kidney which is causing my bladder to blow out my remanding kidney. I was then told I wasn t eligible for a transplant as my bladder would damage any donor kidney I received. I need help and it has taken along time for me to feel comfortable to talk about my disease as I know there are a lot more people out there with worst disease then mine. I was just wondering if there are any other people out there suffering from similar problems and have had it fixed as I am having difficulties finding surgical help or if anybody needs to talk about their health issues as I know it s hard to deal with severe health problems not only health wise but mentally as severe continuos pain can make people feel like they are going insane. I try to wake up every morning and stay positive and smile through the pain and feeling unwell all the time. I can not work due to my health issues and it gets me down all the time but I stay positive and hope there is light at the end of the tunnel.
Hello and welcome to Chat Doctor. As a Urologist, I can fully understand the trauma you're undergoing. If you can send the latest discharge summary with scans, kidney function tests, and the aerodynamic tests and all reports, present medication, I can certainly give you an expert opinion regarding further treatment. Failure after second pyeloplasty, for re-stricture of POJO, is well known. Send them in my name. Keep a positive attitude. Remain cheerful and wish you well.