Hi ladies. Hope everyone is having as good a day as possible. Iv been considering whether I should pay privately for regular/annual MRI scans to help monitor my Endo and just wondered if anyone else has resorted to this?
For background, Iv had severe Endo for about 20 years, diagnosed 10 years ago with emergency bowel surgery after the Endo had strangled and killed a large part of my bowel and rectum. Then felt much better for a good few years. But I have also recently lost my right kidney function to the disease, without really having any symptoms to indicate there was such a problem. I went in for a full hysterectomy last November but things were so messy they could only remove my tubes and ovaries, as well as the whole of my umbilica as this was also riddled and had caused me problems for a few years.
Sadly, I am still bleeding monthly despite the removal of ovaries. They assume a tiny fragment of ovarian tissue must have been left behind during the complicated surgery. So I still have a period, gutted! But have to say my pain and symptoms are much reduced at the moment and certainly bearable. My worry is that if the hormones are still strong enough to make me bleed, I assume the Endo will still grow and spread. I have already lost so much to this disease I am petrified of it still spreading and damaging organs unnoticed till it's too late. I know most consultants won't necessarily monitor/scan regularly unless you are suffering with bad symptoms, which I'm generally not at the moment. Has anyone ever considered a different way to monitor the growth of their Endo rather than simply waiting for symptoms to get so bad they go back for a consultant review?
Take care ladies xx