Ca 125

[Adhamilton]

Has anyone had ca125 blood test for endometriosis? As I had free fluid in the pouch of Douglas. I had a hysterectomy 2017.

[Sapphire2021]

Hi, i had this blood test because they were concerned about a cyst i had. It did come back raised at 41 so i got sent for an mri which cleared the cyst for cancer but found endometriosis which is why the level was raised.

[Lindle]

CA125 isn't a test for endo - it isn't sensitive or specific enough.

[Smokey2020]

I also had this test after cysts found on ovaries. It was raised to 418 when should be lower than 35. It is raised for inflammation so endo can definitely make your levels higher. I don’t think it’s used for endo diagnosis as you need scans or surgery for that but if levels are used you seem to get fast tracked for scans. X

[Tillyfloss]

Hi. Hope you are ok. As already said it’s not a test used to diagnose endometriosis, raised ca125 can be caused by various things. My experience was a ca125 test after they found out I had a chocolate cyst that had been misdiagnosed for appendicitis’s. If you’re ca125 is over 35 it’s classed as high, mine was 2144, I wont bore you with the details but it turned out to be so raised due to the endometriosis growth, after two surgeries, prostap and a pregnancy it went down to 200 . Have you had the test or awaiting the results? Xx

[Adhamilton in reply to Tillyfloss]

Hi tillyfloss I hope your ok too! 😊 Thank you so much for your reply I’m waiting for my results had blood done yesterday.

[Readalot2]

Hello,

I had a lump on my ovary just over a year ago and the blood test showed that the ca125 marker was high.

I then had an MRI, to see what the lump was. It turned out to be endometriosis (which I was pleased about at the time, because the alternative was cancer).

As a result I had an oophorectomy (I am 53 now, so reproductively it wasn't an issue for me).

I have experienced pains again in the last 6 months and my ca125 level was tested again. It was agin raised (although not as high). The gyno then mentioned full hysterectomy. I was told to wait another 3 weeks and test again, which I did and the marker had gone back to within the normal range. To which I was told, no problem, just test again in 6 months.

It seems as though because this marker wasn't high any more, the gyno didn't think there was a problem to resolve. This was only a couple of weeks ago and I am waiting to see how the pain goes. I am not in constant pain at the moment - I tend to experience flare ups.

If I get a further problems over the coming months (which I em expecting) I will go back.

From reading other answers to your question, it would suggest that this test alone is not sufficient to detect endometriosis. I suspect (but this is based on a guess and nothing more), that the ca125 level (which is also used as a marker for ovarian cancer) is raised if there is some some of lump/growth, rather than just widespread endometriosis. Someone who has more experience or is qualified, might be able to clarify if that is the case.

Good luck with your test and I hope they find something which is able to help you.

xxx

[Bigsize9foot]

Hi,Both my nhs and private consultant told me that this ca-125 test is unreliable if you have endo. It’s supposed to be a test for inflammation- most commonly used as a diagnostic tool for cancer but if you have endo they expect the levels to be raised anyway.

My private consultant (as I understand it) used the results of the ca-125 along with the presence of a “chocolate” ovarian cyst to diagnose endo. My lap is booked for a week on Wednesday.

Hope that helps in some way.