Many of you EndoSisters may have heard, or are following, the use of the biomarker CA-125 as a possible indicator of the presence of Endometriosis. I had my annual pap smear appointment this week and figured I’d ask my doc to see if they’d run blood tests with my usual annual bloodwork.
I went in fully aware and understanding that CA-125 is considered an unreliable test for Endometriosis for many reasons: it could be elevated due to other factors, it may read a false positive, or CA-125 levels may vary naturally throughout our menstrual cycles.
The conversation went pretty much as expected. My request was ultimately denied, but at my acceptance. Had I insisted, I’m sure it would have been accommodated. Reasons given for denial:
- CA-125 test results may be false positives;
- The levels vary throughout our menstrual cycle;
- Even if I only have an ovarian mass that is non-cancerous (which I don’t…), my CA-125 levels may still be elevated, leading to a false positive;
- Elevated CA-125 levels may be due to several reasons, not just Endometriosis;
- If a false positive were received; a whole slew of tests would have to take place: why is it positive? Indicative of cancer? Endometriosis? Something else?
- I have no family history of ovarian cancer;
- If I had, then MAYBE the test would be justified.
- Insurance may not cover the cost;
- Without proper justification (aka ovarian mass or history of cancer), insurance would likely deny payment…and it’s over a $500 blood test.
Given the fact that the many studies of CA-125 and Endometriosis tend to express that CA-125 is not (yet) an accurate indicator of the presence or recurrence of Endometriosis, I’m okay with not testing my CA-125 levels.
I was nervous asking because I knew of the general opinion associated with the tests for Endometriosis. BUT, I asked anyway. I also don’t feel like my doctor judged me for asking. And now I don’t have to wonder…
But I know there are gals out there who DO test their CA-125 levels and I must ask: how’s that working out for you? What has been your experience? Did you have to convince your doctor? Does your insurance cover it? Share in our comments below!
(This is PURELY my opinion. Please feel free to express yours, and always feel free to counter what I say. I’m just a gal with Endo.)
~Lisa
Bloomin' Uterus 
My levels were on the low threshold of normal in the middle of my period and a severe flare up, so I’m sceptical at how accurate this could be…
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Skeptical myself, too. Thank you for sharing!
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That’s terrible that you are at the mercy of a private health provider. I have ca 125 every two years. Thank goodness I do, results last week showed raised levels. Now for the ultrasound. My mum did have ovarian cancer( and she survived it). Having this test regularly gave me a base line. I am in Australia and this test is free.
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I had my CA-125 results today, I went private and paid £70 for it as I’M not sure my doctor would of approved it. I’ve had bloating and abdominal pain for 2 weeks and thinking the worst decided to have it done, it came back 8 so well within normal range. They think I may have a cyst on my ovaries but got to wait for ultrasound
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I’m sorry to hear you’ve been in pain, and hope it lessens some. Normal range, eh? See? Curious! Keep us posted after your upcoming ultrasound, and good luck. ❤
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Oh yay, I’m so happy you wrote about this! My CA-125 was through the rood prior to two of my endo surgeries, so the docs had me all doomsday-like about ovarian cancer. During each of those surgeries large (noncancerous) cysts were removed and lots of endo was removed too. After the surgeries, my CA-125 had returned to normal range. So was it the cysts or the endo that elevated the markers? Who knows. The test isn’t reliable enough (yet at least!).
Since those experiences, nowadays I believe that CA-125 is superfluous when it comes to endo. If only endo was diagnosable with a blood test…. *sigh* Way too good to be true IMO.
And there’s always places like mylabtests.net where you can order and pay for your own if you really want to know what your levels are. 🙂
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*woot* Thanks for sharing that link, too! And I’m glad to hear your levels returned to normal after surgery – but again…what was it? 😀
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Another lab without having to go to a doctor or insurance is mymedlabs.com. I have used them a lot in the past when doctors refuse to order tests. I now see a practitioner who will order the tests I ask. Most of the time, she orders the tests and I am very happy. So I don’t need to ask too much. 🙂
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I actually love how informative your blog is, for you “just being a gal with endo”. I had the test done just once bc they were actually checking for cancer. The level was high from what I remember, but thankfully, no cancer was found. Haven’t checked it since, but I wonder what the endo is doing, if anything, post surgery.
Unfortunately, my mind is filled with thoughts of my now broken ankle and arm, which, as far as I know, are not endo related😉
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Augh! So sorry to hear about your broken ankle and arm!!! Heal up, woman! And happy to hear your test results came back cancer-free. PS – stupid Endo, regardless!! ❤
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I didn’t know about the test – my functional medicine practitioner ordered it. I’ve only had the test once. The result was 17 U/mL (February 1, 2017). Reference range for this lab is under 35.
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Just to clarify, the test was ordered to rule out ovarian cancer. The reason for the test was my “diminished ovarian reserve” of my age. I now have “Augmenting Ovarian Reserve.”
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*for my age. not “of.”
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