Retroperitoneal Fibrosis

This site is run privately by Tony and Deborah Bailey in an effort to gather and share information on this extremely rare disease.  Tony was diagnosed in 2002 after nearly a year of repeated mis-diagnosis. Lack of medical knowledge led us to build this site.  We are not medical professionals.......most of the information on this site was submitted by others affected by RPF. 

What is Retroperitoneal Fibrosis?

Simply put, it is a fiborus tumor growing in the hollow area near the back of the abdomen (retroperitoneum).  It usually begins it's growth around the aorta and the illiac arteries (blood vessels which branch off the aorta).  It continues to grow reaching out to other organs, the most common being the kidneys and ureters (tubes which run from the kidneys to the bladder).  As the growth progresses the organs affected begin to shut down.  RF hardens to a cement-like state.  This along with the involvement of the arota make complete surgical removal of the mass extremely dangerous and in most cases, impossible.

Common Symptoms

Severe pain in the lower back, abdominal, and flank areas, swelling and/or pain in one or both legs is very common.  Decrease in urination or lack of may signify kidney involvement.  Testicular swelling, in one or both,  is common in men.   Endometriosis is a common factor in woman diagnosed with RF.