I’ve been battling with endometriosis for 5 years now.

[Antomum]

I just found out today that my test result (CA 125) is high, 135. I’m so scared that this has resulted to ovarian cancer 😢 I have appointment with my gynaecologist tomorrow.

[PopcornPJ]

Hi, I have raised Ca 125 and it was explained to me that it is not a reliable test for ovarian cancer. It can be raised because of inflammation, which is present with endo. It is a good marker for establishing a base line, for example you had ca125 tested, have surgery/treatment and then have it re-tested. I know it’s difficult not to worry and I’m glad you don’t have to wait long for your appointment. Ask questions and voice your concerns. Age and family history as well as imaging are more reliable indicators. Let us know how you got on.

[Antomum in reply to PopcornPJ]

Thank you PopcornPJ. I saw the consultant today. He wasn’t concerned about the raised CA 125. He has asked me to do an MRI to get a clearer picture.

[Goinginsanewithpain]

Hey hun, I hope you’re ok, I always have a raised CA125 level , but like PopcornPJ says I was told this was due to the chronic inflammation caused by the endo.

I’m so pleased you are having a consultation so soon to get the answers you need. Please let us know how you get on . Sending love and hugs.

[Antomum in reply to Goinginsanewithpain]

Thank you. I saw the consultant today. He wasn’t concerned about the raised CA 125. He has asked me to do an MRI to get a clearer picture. I hope I get the appointment soon.

[Goinginsanewithpain in reply to Antomum]

Hey, that’s good that he wasn’t concerned about the CA125 being raised, mine wasn’t either and he said it’s very common with endo. That’s good that they are offering an MRI , i too am waiting for one. I know I have stage 4 endometriosis and adenomyosis, but they want to see how deeply infiltrated it is so they can plan for what’s next …. 😞 I hope we both get our scans soon and get some answers and next steps. Sending love.

[Rainbow2468]

Hi i had raised ca 125,and three gynecologists and the ultrasound consultant told me that it's nothing to worry about unless it's in its thousands. It can be raised by endometriosis, adenomyosis, cysts and if your your having a period when they do your blood test. I too was freaking out but not anymore. Sending you a big hug x 🤗

[Selfel]

I had a raised ca125 blood marker. No ovarian and no bowel cancer. It is probably the endo causing it. I am waiting for a resection an then will retest to see if my test results goes back down. It is not a reliable marker for cancer and my consultants are not worried.

[Stitchrunner1]

Calm down! I know. You can't. The only people who can truly help you are the medics. Tell them you are scared. They will help you through it. They will tell you the truth. If the worst does come, you can rely upon them to step up. Our minds run riot when we are afraid. It is perfectly fine to be absolutely scared witless. Any one would be.