I Have Retroperitoneal Fibrosis

A Retroperitoneal Fibrosis anonymous support group with information on diagnosis, treatment, symptoms, along with personal stories and experiences with Retroperitoneal Fibrosis. You're not alone. 24 People

    I Have Retroperioneal Fibrosis And Anklosing Spondylitis.

    I was first diagnosed with Ankylosing Spondylitis and was being treated with a biologic drug. Then developed IRPF which required bilateral stents. I am lucky to be under the care of a very good Rheumatologist who was able to shrink the masses with Steroids and cell cept. Both...
    lonecats lonecats
    51-55, F
    1 Response Sep 13, 2013

    What Now?

    I've just been diagnosed with retroperitoneal fibrosis. I thought sure I had a kidney stone. I had a fever every day for over a month, but my lab work revealed no abnormalities and all my test came back fine.I finally drove myself to the emergency room and this what the outcome...
    deleted deleted
    May 15, 2012

    The Last 3 Yrs

    When i was 20 yrs old i worked with mentally disabled and lifted them and walked them n april of 09 i started getting pains on my lower right side in the front which continued for months until about july it moved to the back and at times it was unbareable. i was in and out of...
    kaylalinn kaylalinn
    1 Response Oct 20, 2011

    So this is my story and a question.

    I suffered from severe endometriosis and adhesions for years. I finally had surgery for it two years ago. Before the surgery I was experiencing back pain and what I thought were kidney stones. During the surgery my doctor (who was experienced not only with endo metriosis but...
    amr89byu amr89byu
    31-35, F
    Mar 20, 2016

    Update On My Rf Treatment

    Thanks to all for the comments and questions. I took steroids and Tamoxifin , a chemo drug for a year. Annual MRI showed a small decrease in density. I’ve been off that for sixteen months now. I get a new stent on the left every six months. Pain usually increases as the...
    billsmtn billsmtn
    51-55, M
    1 Response Jun 6, 2012

    Waiting For Diagnosis

    I've been having continuous dull, throbbing flank pain for nearly six months and lower back pain. My doctor believes it could be Retroperitoneal Fibrosis and has suggested and MRI scan. Does anyone know how long this disease takes to develop as I'm hoping I don't have to wait...
    Deb333 Deb333
    46-50, F
    1 Response Apr 28, 2012

    Stop Taking Tylenol

    My first symptom started out as a mild back ache. At first I thought I just needed a new bed, which I purchased after 3 weeks of pain. Soon my back ache turned into mind numbing pain. I went to several doctors at least 7 hospitals over a 2 – 3 month period. I was given...
    three20nine three20nine
    1 Response Aug 23, 2013


    My wife lives in England and I live in Canada . I lived in the UK  for 10 years and came back to Canada to start the immigration process for bringing her here . She got diagnosed with Retroperitoneal Fibrosis a few days ago and she will be getting a biopsy  done in 12 weeks...
    canineng canineng
    2 Responses Mar 16, 2012

    Experienced - It's Not Over Yet

    The road to diagnosis of RPF for me started with three strokes.  The first, in May 2008 was minor (TIA).  The second was in December 2008 (TIA).  I was diagnosed with high blood pressure and sent back to work after each episode.  On January 29, 2009 I had a...
    billsmtn billsmtn
    51-55, M
    2 Responses Sep 16, 2009

    I'm New To This

    I was just discharged from the hospital on the 9th of May with Dx of Retroprenineal Fibrosis. I thought I had a kidney stone, only to find that there was a blockage around my uretha area. They have put a stent in and I'm scheduled to see my Urologist on the 23rd of May and an...
    llwa62 llwa62
    4 Responses May 19, 2012
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