I was diagnosed with bi-lateral reflux as a child, they placed me on antibiotics and thought after about 3-4 years I had outgrown it. When I was 20, I came down really ill and they discovered it was still there so they did surgery upon both sides. They also discovered that my right kidney was scarred. I had been fine after surgery except for a few bits here and there of them finding protein and blood once, until last July. I began coming down with kidney infections every other month or so; they'd put me on Cipro I'd seem to get better then a month later, I'd get sick again. Finally the pain in my right side became unbearable, I couldn't keep water down, I was running a fever, et cetera so I went to ER in February. They ran all sorts of tests, blood tests, CT Scan and an IVP. They admitted they had no clue but said obviously something's occuring but its not showing up on tests at the moment but it could in the future.
I followed up with my doctor, she found protein and blood agian in my urine, sent me to a Urologist. He put me on 20 days of Cipro asked me to do a VCUG and come back in a month. The VCUG was painful. 5 hours afterwards I was peeing blood for the next few hours, like almost nothing but blood. It made the pain in my side worse so I went to the ER a week later again hoping to get relief (this was in April). They brush me off with a single vicodin, tell me there's blood in my urine "but thats to be expected" and sent me on my way. My urologist did nothing. He thought maybe the reflux had returned but the VCUG showed that wasn't the case so he was at a loss.
So, I'm still sick today months after my first ER visit for this. I have constant pain in my right lower back and flank, like a nice sharp stabbing ache. I have occassional vomiting, lots of nausea, loss of appetite, low grade fevers. Two weeks ago I blacked out for no apparent reason. I've been dizzy, extremely tired, total lack of energy sometimes; lethargic moments others. I pee excessively, like every half hour to hour and a half; 2-3 times during the night. Peeing makes me feel nauseous. I'm tired of being sick but I don't exactly know where to go from here. I'm suppose to have a follow-up with the urologist at the end of this month but I'm not sure its going to result in anything as other than the VCUG nothing's been done since the first ER trip. Any suggestions would be greatly appreciated. Sorry this was so long.
If you continue to have problems, do some research on the following rare kidney disorder: Loin Pain Hematuria Syndrome (LPHS). My daughter was recently diagnosed with LPHS at the Cleveland Clinic. She has been suffering for almost four years with a variety of symptoms (the main ones being flank pain and hematuria (blood in the urine).
You should not have been bleeding after a VCUG or had pain. In fact, my daughter started with kidney stones when she was 3 and has had numerous VCUG,s and never complained about pain during or after the test and did not have increased blood in her urine after either. You may want to consider going to a new doctor. We went to the Cleveland CLinic. Any large teaching hospital would know more than a small facility. Hope you find out what is wrong and feel better soon. Take care!
If you live near a university teaching hospital, this would be where I would go.Has anyone actually been monitoring your labs during all of this?Are they normal?The U hospitals are much more on top of things as far as new diagnostics,treatments and just plain knowledge.You also get a team approach to your problems from many different docs.My son went to our local U hosp when he went into liver failure,he also has kidney problems.When I was Dxed with a bizarre formation inside of my spinal cord, i also went there and ended up having my surgery there.i really felt well taken care of.It really does sound like no one really cares that you are having all of these problems and the pain.You need to get someones attention.if you happen to live within even a couple hours drive from a good U hospital, i would give them a try at least.what have you got to lose at this point?I hope your nightmare ends soon.Marcia