Raised ca125 and ovarian cyst : Hello, I am... - Endometriosis UK

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Raised ca125 and ovarian cyst

Jellybean20 profile image
8 Replies

Hello, I am so new to all of this but don’t have anyone around me dealing with the same thing. Hoping someone can help or relate?? So I had cin 3 cells removed nearly 2 years ago. Ever since my periods were very strange and few months after the procedure I started to get pelvic pain and spotting all the time. I was delayed getting my follow up smear due to illness and then Corona hit making everything harder. I just presumed all of my problems were due to the procedure I had. After speaking to a doctor they asked me to go for an emergency gyny app where they found a growth on my cervix and uterus bleeding. My doctor then requested a biopsy on the growth, internal scan and ca125 blood test which came back raised to 76. The scan revealed a cyst on my ovary measuring 2mm which is very small. The biopsy on cervical growth came back as endometriosis. The doctor has said that she feels the cyst and raised ca125 are all endometriosis. They have put me on provera tablets while I wait for my referral which has stopped my main periods( which weren’t heavy) but make me spot every day. Has anyone else a raised ca125 and it’s been because of endometriosis?? I do have another sizing scan on my cyst next month so that might help give me some answers? I also had an internal scan where the doctor said she can feel all the nodules in my pelvis?!!! I’m just not convinced this is all endo. Any help will would be gratefully received

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8 Replies
Smokey2020 profile image
Smokey2020

Hi. It is a very frightening experience when CA125 is raised. Mine were much higher at 412 when tested and I have gone via the cancer referral process. The cancer mdt ordered a MRI and from the results of that signed me over to a bsge center for suspected endo. I have been reassured that endo can cause high CA125 results and they are confident it is endo and not ovarian cancer. I hope this helps a little

Jellybean20 profile image
Jellybean20 in reply to Smokey2020

That really does help thank you! Just feel in this weird limbo of the unknown. I haven’t met my endo doctor yet and presume it will be delayed now due to the current situation. Thank you for the reply

butterfliez profile image
butterfliez

Hi it is so worrying when the ca125 test comes back high all sorts run through our minds , this happened to me before my endometriosis diagnosis, my levels were super high the specialist was concerned & sent me for all kind of blood tests & regular repeat ca125 turns out it’s more likely to be raised if you have endometriosis & with cysts. So try not to overthink this. Hopefully you’ll get some reassurance x

Jellybean20 profile image
Jellybean20 in reply to butterfliez

Thank you! Really appreciate the reply and it has helped reassure me! X

Spireite profile image
Spireite

Mine was 147 on my latest test, pre lap. My consultant wasn't worried about it.

MagicTea profile image
MagicTea

Me too mine was raised. My dr told me ovarian cancer and I was distraught. Saw the Gynae who said absolutely not. It’s an inflammatory marker and I’ve since found out I have an 8cm ovarian cyst and endo. Waiting for the op to remove. So please do not worry xx

Natalia88 profile image
Natalia88 in reply to MagicTea

Hi,They did the scan and found cyst- I'm awaiting another scan ... but noone recheck my CA levels yet... don't know what to expect- this waiting time is killing me :(

MagicTea profile image
MagicTea in reply to Natalia88

They’ve never done my CA levels again. Had Mri, ultrasound and investigatory lap in July last year but waiting for op. It’s awful waiting isn’t it. I was fretting until my lap when they’d seen inside. Hope you hear about your scan soon, might be worth chasing up.

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