Hi - I was diagnosed with retroperitoneal fibrosis almost 3 years ago, not only did effect my urethas, meaning that I have stent operations every 6 months, but it also wrapped itself around the nerve endings at the base of my spine, causing the most indescribable pains.
I was put on tamoxifen, a drug used on women in remition from breast cancer and only 3 months later the mass was inactivated. My consultant told me that had this not worked, there were a number of chemotherapies she could use.
Although I am still in pain six months after having been cured,things seen to be a little better and I have been told that by the summer i should be pain free IF the steroids I take manage to shrink the mass without leaving scar tissue.
As far as I’m concerned the main thing is that this awful condition has been stopped in it’s tracks, and at last I have some hope of a pain free future and the chance to be a ‘proper’ mum again - fingers crossed