The story of Emma
I have a desmoid type fibromatosis tumour in my left hip. It was discovered a year after I gave birth to my son in 2017. I was told I had PGP at 20 weeks pregnant and had to use crutches to walk. I had countless physio sessions but the pain didn’t go away. I was finally sent for a musculoskeletal examination and was told at 31 years of age that I had the hip of someone well in their 80s. We had to find out why. 1 x-ray and 2 MRI scans later I had a tumour. The biopsy diagnosed me with Fibromatosis (Dec 2018). 2 years later I am yet to find something to give me relief from the nerve pain I experience every day. I am under an oncologist and a pain team but so far everything I have tried hasn’t worked. Everything that is suggested is a ‘try it and see’. There are no statistics to support success rates as they have nothing to compare it to. I am the Guinea Pig.