Retroperitoneal Fibrosis              (Ormond's Disease)       

You are not as alone as you may feel

The RF World Support Group is an excellent source for information and advise!   Thank you to Gary Cooper of Australia, and Put Morgan of the U.S.  for all their hard work in making this group possible.

For those who enjoy Facebook, Put Morgan has begun an RF group where people can share in their experiences.

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.