Endometriomas and CA-125 test?

[regina79]

Hi all and Happy New Year...!

I have only just read the report from the lab after my US scan last night. My GP gave it to me finally, purely because I asked her to refer me to a private Gyno I found with my private med. The report states that I should have been urgently referred to a Gyno, which I've been with the NHS; however they didn't seem to be worried about my endometrioma cysts or anything else. The report also stated that I should have had a CA-125 test.

Is anyone here who had this test done and why or anyone who has endometrioma cysts in ovaries and needed to also have this test done? I have read that women who have endometrioma cysts are at an increased risk of ovarian cancer. Could this be why? And if so, why did my GP not care to send me for one? I'll have to call them now asking about this, but I just wanted to know if anyone else who has my same issue went for this test as well.

Thanks in advance x

[milly89]

What was found on your USS? When I had mine they found two cysts of 6cm on each of my ovaries and once my GP received the report requested a CA125 blood test. Unfortunately in pre-menopausal women it can be an unreliable test, as it’s primary function is to pick up on abnormal protein in the ovaries, such as cancer markers. However, any abnormal growths, including endometriosis and fibroids will come back with raised markings. Mine was over double what it should’ve been, so I was fast tracked under the 2 week wait, but the first thing the gynaecologist said was that it was highly unlikely anything awful, I’m now awaiting referral to an endometriosis specialist. As far as I have read, guidelines suggest these are recommended investigations for any growths over 5cm as a precaution.

I hope this helps.. I only got this far by changing GP’s, and I cannot recommend it highly enough if there is any doubt in your mind that your current doctors aren’t doing what they should. X

[Hidden]

I had it done 3 times on my way to diagnosis and it was always raised - I had levels of 119, 85, and 107. It is not a particularly useful test as it measures inflammation which can be caused by all sorts of things including endometriosis, and some women have raised levels for no discernible reason. A positive result does NOT mean cancer and I cannot stress that enough (having been told by an incompetent GP over the phone on a Friday afternoon that my first raised result meant I probably had it). It detects cancer 80% of the time if cancer is present (which isn't the same thing as a raised result indicating an 80% chance of cancer which is what my GP told us). My gynae said that they generally don't start to panic until the number is in the high hundreds or even thousands.

Knowing what I know now I would refuse to have it because it caused terrible stress for us. The only benefit to it was that I was fast tracked for an ultrasound so waited 5 days instead of 6 weeks, but as it still took them another 8 months to give me a confirmed diagnosis of endo, I can't say it sped things up overall. FWIW I went on to be diagnosed with severe disease with bladder, bowel and ureter involvement.

[regina79 in reply to Hidden]

Hi joreilly

thanks a lot for your reply and advice.

Yes, I realise this test isn't reliable, but was just wondering why it was advised in my report from the ultrasound specialist, and therefore why my GP didn't bother following this advice.

I guess only my GP knows the answer to why I didn't have it done. I'll ask them!

Thanks a lot and hope you feel better soon

[Damselfish]

I completely agree with the two replies already posted. I'm treated by a specialist Endo consultant and she said it was pointless having the test for the reasons they've outlined. She was clear it would come back raised and that it would cause unnecessary anxiety. She did remove my endometriomas though, during the laparoscopy. I believe they were under 3cm.

[regina79 in reply to Damselfish]

Thanks a lot for your reply Damselfish!

[Lottie80]

I had my ca125 measured due to the chocolate cysts. It was raised. Onky measured though as i was enrolled into a clinical trial the same day. As others have said it isn't particularly helpful with endometriosis. X

[regina79]

Fair enough Lottie. And thanks for replying x