I want to share my story... maybe the more I share it, it just might help somebody else!
My name is Christina (32yo) and I have been on one heck of a roller coaster in getting my diagnosis after a long 5 painful years. It started with right side flank pain. It would come and go. More severe the more active I was. Lying down seemed to be the only answer. Being uninsured I just tried to suck it up for a while. Tried several home remedies for "kidney's". Nothing seemed to help. Finally I sought out the help of my PCP. He suggested I get an IVP done to check for kidney stones. Sure enough results came back to him saying I had a stone in my right kidney. He gave me pain meds and sent me off to a urologist. Now I lived in a very very small country town back then. So not alot of options as far as physicians went. I went to the the towns only urologist. Right before that very first appt I found out I was pregnant with my son. He came in and said that he thought the small "stone" spotted on my CT was really outside my ureter and in fact not a kidney stone. He said that my symptoms were simply not typical of kidney stones. In fact he didn't think my pain was kidney related at all. And since I was now pregnant we could not pursue any further testing he said. He dismissed me from his office and that was that. I continued to suffer with this come and go flank pain. My obgyn didn't really seem to believe me either. At 5 months pregnant my then husband took the family on a vacation to sea world. Late one night in the hotel room I woke him up crying, begging him to take me to a hospital. Now this is a man who really didn't believe me either. He went back to sleep. While I sit on the toilet in the bathroom in agony crying I could barely pee. Finally I passed out from exhaustion and pain in the bathroom floor. The next morning I was in the normal pain but nothing like the midnight episode. I went to Dallas to visit my family. Again I started having his horrendous pain. My mother took me to the emergency room. They did an ultrasound on my kidneys and said that I had a swollen kidney likely from a stone. They pushed me full of IV fluids and sent me home with a strainer and pain meds. Sure enough... I get home to Louisiana, and guess what I pee out 2 pieces of stones! I bottle them up and take them to my obgyn who apologizes profusely saying she should have put me in the hospital and pushed IV fluids through. Well I continue on with my pregnancy and its not so so bad for a while. Little painful with over active days. I carry on like this for quite a while. Dr says my stones were not made of anything that I could eliminate from my diet and that I would likely develop more stones as I get older. I took this pain as well here comes another. Certainly did not want to go through the mess of being made out to be a crazy person at urologists office again. Time flies by and these pains grow. Now here I am divorced and without insurance and unable to seek help. Plus I was terrified that the same thing would happen. They wouldn't believe me. I have been dating someone for 2 years now since my divorce. And he is a wonderful man. He encouraged me to do better for myself. So I got a job at a big university hospital. What do ya know they have great benefits too! So he talks me into making an appointment and seeing a dr. Again my new PCP since I moved to Texas thinks well you have more stones. Orders a CT. Sure enough it indicates a stone but on the left kidney??? Still my pain is on the right! I go to a urologist who orders a KUB and says that the left stone isn't that big so we don't have to worry about it. And that my right is probably a back ache and that kidney pain is often confused for back problems. He literally spends 2 minutes with me and dismisses me. So back to my PCP. He orders an MRI on my spine. Well what do ya know I work for a Spine surgeon. So he takes a look at my MRI and says that my back is completely healthy. But points out some swelling in the upper ureter connecting to my kidney. He said I may not know much about urology but that doesn't look right. He asks me all about the appt with the urologist. And encourages me to seek a second opinion from the Urology dept here. I make my appointment. She looks at my CT and says the same thing. My ureter looks very swollen. But is confused about the pain and symptoms. Long story but I go through 1 CT, 1 MRI, 2 KUB's, 2 renal scans, and 2 IVP's. But the very last was an IVP and we did this one standing up. Tadaa they see that both of my kidneys are dropping when in the upright position. The right one far worse than the left. And when the right one drops it kinks my ureter causing the obstruction. I was literally bawling someone believed in me and figured it out!!! I am on pain medication but what kind of mom am I on those things? I am groggy and dopey and exhausted. Not to mention I have been having strange episodes of extreme heart palpitations. I have 3 children to tend to and a job to do. That i have only been at since July. I'd like to get healthy so I don't loose my job. Thankfully I work for physician's who are caring and understand i will get better. They think I am a wonderful admin and love having me around. So my diagnoses BILATERAL NEPHROPTOSIS. Google it! Common in young thin women most cases on the right side! Very frequently goes undiagnosed because Dr's just don't see it enough. They do not know to do tests such as the IVP laying then standing to compare. The parts that hold my kidney's up failed. In fact the right one is falling down and the ureter is getting hung up on an artery. The blockage when standing is causing the pain. The kidneys not being able to drain properly is causing the stones.
I am scheduled for a Laparoscopic Nephropexy in two days. On Dec 23, 2010. They are going to suture my kidney to my back muscle to hold it up.
Don't give up! There are Dr's out there who WILL find out what is wrong with you. Maybe your symptoms sound familiar? Look it up, investigate, whatever you do dont give up. I hope my story helps someone out there. I suffered for the last 5 years. Only two days left!