Hi
I was diagnosed with ESS in November, after arriving at hospital with a blood clot and kidney problems. After scans, tests etc I was eventually diagnosed 6 weeks later. I had a hysterectomy 8 years ago at which time I had ESS but it was missed and now I have a tumour around my ovary (which where not removed during my hysterectomy) cancer in my omentum and some nodules on my diaphram. My tumour is inoperable and I am currently taking Megastrol, but wonder if this is the same for everyone.
It seems to me to be a very lonely place as I know no one with ESS. I am interested in how different people are being treated, how they cope day to day, and their experiences. here's hoping!!
I am a married mum of 4 teenage boy, who's feeling very isolated.
Nic x
