[Guest]

This is something new to me and I was wondering if you knew any information on it. I have had several bouts with intense flank pain that felt identical to a kidney stone. After IVP's and CT scans and cystoscopy, there was no stone. I have only 1 kidney due to renal cell CA last year so any pain I wind up hospitalized. My internal medicine doctor said that because I was birth control pills there was a syndrome known as loin hematuria that has the same symptoms as kidney stones My urologist didn't say much about it and my OB/GYN said he had never heard of it. But since I have been off the pill I have had no more pain. I was wondering if you knew much about it and anything to do for it. He learned of it through the Clevelend Journal of Medicine (oct or nov,2002)

[Kismetqt]

I wanted to respond to your post about Loin pain hematuria Snydrome. I have had this disorder for the last four years, and it has changed my life to the extent that I cannot function very well at all in everyday life. I got this disorder about a year after having gastric bypass surgery. I had started to pass kidney stones very frequently until the stones were small "sandlike" material that irritated my ureter to the point of bleeding (hence the hematuria). The matieral is calcium oxalate in my case. I pass this material all the time. I am in constant pain, especially at night. I cannot function without constant pain medication to the point of building up a tolerance to the medications so I have to take high doses of narcotic pain medications to get relief.
Because this disorder is extremely rare, I have been treated like a drug seeker, or a faker when I've had flare ups that I couldn't control at home when I've gone into the hospital ER. I've been made to pee in front of nurses because doctors thought I was putting the blood in my urine to get drugs.
through all of this, I've developed almost a hatred for hospital ER doctors and some doctors in general. I've had so many treatments and therapies to see if something other than pain meds would give me any amount of relief, but all they've done is fuel my hopelessness in the matter. When I was first diagnosed with this disorder the Nephrologist (kidney specialist) told me that some people have this disorder for a year or so and it goes away and some others have it for the rest of their life. Needless to say, I am thinking I am the latter of those people.

I have thought about the pain your describing and I think you should go to a different OB/Gyn and have them do a laproscopic procedure to rule out endometriosis.

Good luck with your health situation.

Marcie