Elevated CA125

[Melliect]

Hi everyone,

I was diagnosed with stage 4 endo about 17 years ago after the removal of 2 10cm complex cysts on my right ovary. I was treated with the usual induced menopause and hrt. After this I have had no symptoms until recently. I had my mirena coil in for 7 years and decided to have it removed and to go back to periods. The periods have been heavy with a day of flooding and large clots. More recently I've had pelvic pain that lasts throughout the month in the right ovary area. It wakes me up at night but is remidied with a couple of paracetamol. I visited my doctor and she took a range of blood tests, including CA 125. I had a message to call the doctor and make an appointment and today he told me that my CA125 is 47 and that I need an urgent referral to a consultant 😳. I had elevated CA125 with my previous bout and was treated and operated on by the oncology team and was absolutely terrifieded it was ovarian cancer 😭

Now I have the horrible wait again and I was wondering if severe endo is always there and has just resurfaced or if I should be more worried? I'm 45.

[Christin_a]

Hello. Endo can raise the ca125 as it's just an inflammation marker. I know it's hard but try to stay positive and think that it's likely the endo as it doesn't go away even after surgery. The hormones of the coil likely were helping with your symptoms, but now that your off of it your getting symptoms again which is normal. As there isn't a cure to endo Judy options to try and control symptoms.

[Melliect in reply to Christin_a]

Thanks for your reply. I know everything you said is true, it's just trying to not worry when it's your self 😣

[Melliect]

Thanks Lindale. Yes, I guess I had just assumed my endo had gone away but thinking in it I've had several niggles over the years that are probably down to adhesions. I think I was under a specialist endo team adenbrookes before so hopefully I'll be referred back there after the preliminaries and if its nothing more sinister.