Hi - please could you advise what would generally be considered a very high CA125 level in advanced endometriosis? I was thought to have ovarian cancer upon vaginal ultrasound but it turned out to be advanced endometriosis with a large chocolate cyst which developed in its entirity in after a hysterectomy and BSO and going on HRT for 4 years (oestradial only). The count was apparently the highest ever returned from the lab at 'well over 1000'. It could not all be 'removed safely' and I have cyclical symptoms still and can tell it is growing again. I am 53 yrs old and post menopausal. All my adult life I had horrendous symptoms at ovulation then gradually for most of second half of cycle when I was completely struck down by a sort of total brain malfunction (blurred vision, dizziness, complete short term memory loss, confusion, dysequilibrium and overwhelming head pain and fatigue - I was utterly decapacitated by it.) I also had so many infections that I was on antibiotics every 2-3 months for 20 years. Whilst taking HRT the symptoms were permanent and frankly I thought I would die but as I had a really bad ear infection that would not resolve the symptoms were thought to be due to that. It seems I might have had an autoimmune response to my own oestrogen causing these symptoms in which my body responded to oestrogen (and oestradial) as a toxin. Could this be why the CA125 was so high - my immune system had nothing left to fight the antigens with? Many thanks for any help in explaining .
You should see a gyn oncologist. The Ca 125 can be quite elevated in endometriosis. the cure for severe endometriosis is the removal of the uterus, tubes, and ovaries. This can be among the technically hardest surgeries there are. That is why I suggest a gyn oncologist as they do technically difficult surgery all the time.
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