for the last 3 years or so I have had blood my urine.. along with chronic kidney pain and lower abdomen pain.. mostly I can get by with it however more recently I have been totally exhasted, nausious and sick also feeling very unwell to the point I am unable to attend work or function properly.. and the pain is mostly unbearable.. I have been to the docs and he has done the dip stick test confirmed blood and protien in urine(which is always there) and sent away blood and urine samples for testing.. I have attended the docs again to be told tests are clear and it is loin pain.. That is a first.. When i asked the doctor what about the blood in the urine he replied well if the specialists cant tell you how am I meant to?.. this took me aback(i have in the past had xrays on the kidneys and the camera in the uretha nothing should then either) He then asked if I was concerned to which I replied of course would you not be as it is now having such an effect on my life and work with being ill all the time.. desperate and at a loss what do I do?
Hi! I was diagnosed less than six months ago with Loin Pain Hematuria Syndrome (LPHS). I had every test in the book done before this: multiple CTs, ultrasounds, renalgram, every kind of blood work you can imagine.
It is a really rare disease that is prevalent (but not limited to) white women in their 20s. Not much is understood about it, but they think it has to do with improper diffusion of blood across the basement membrane of the kidney which causes swelling and the horrible pain.
There's not really a treatment, but I undergo nerve blocks every few months so I don't feel the pain from my kidney. It is amazing relief: such a difference from where I was last year.
I recommend looking up LPHS on the internet. I saw Dr. Hebert at OSU medical center and he diagnosed me - he's actually one of the doctors who discovered the disease.
NOTE: It is so rare many doctors have not heard of it. Press them to research it!