I was diagnosed as BRCA2 positive in January 2024 and decided to have a pelvic scan and CA125 blood test to check my ovaries, which showed fairly large masses on both ovaries. CA125 was 96. I was then sent for an MRI which showed the masses were endometriomas. This was followed up with a laparoscopic risk reducing bilateral salpingo-oophorectomy which had to be abandoned as the surgeon was worried he’d cause too much damage, as my organs are all stuck together due to the endometriosis. The only way I can remove my ovaries is to have a hysterectomy, which will be problematic as my bowel and ureter is stuck to my uterus, with the potential of leaving me with a colostomy and a shunt for my ureter. I’ve been referred to an endometriosis specialist for the surgery but I don’t think I want it, the risk for complications are potentially life changing, but without the surgery and subsequent histology, clear cell carcinoma can’t be ruled out, as a biopsy of an ovary isn’t possible. Has anyone been in this situation?
Hi Louise_70
It sounds like you have a difficult decision to make.
I'm not a member of this forum but noticed that your post hadn't had any replies yet. Responding to you will 'bump' it back to the top of the discussion list again.
"Never regret a day in your life, good days give you happiness, bad days give you experience"
