Ca125: Hi, just wanted to ask have any of... - Endometriosis UK

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Ca125

Laura_T profile image
16 Replies

Hi, just wanted to ask have any of you had ca125 blood tests and levels elevating? Just wondering if this could be down to endo? It’s not me it’s my sister. She’s due to have a referral for other symptoms possible endo.

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Laura_T profile image
Laura_T
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16 Replies
Stresshead24 profile image
Stresshead24

Mine was raised with endo ... they haven't done it since my op tho to know of its returned to normal 😕🤔

Laura_T profile image
Laura_T in reply toStresshead24

They’ve done 3 blood tests now and it’s increased twice. She has appointment Friday with gynaecologist. Do you know how much yours went up by? Did they say it was endo related with you. Strange they haven’t re tested you. Maybe you should ask for another blood test to be sure x

girli1111 profile image
girli1111

Yes, mine elevated to 473 at one point, I had ovarian growths, was seen by gynae oncology ahead of surgery, but all was one, was just the endo causing the raised level.

girli1111 profile image
girli1111 in reply togirli1111

Two years previously it was 175... and after ovaries were removed it returned to normal range

Laura_T profile image
Laura_T in reply togirli1111

I will let her know. Thank you x

girli1111 profile image
girli1111 in reply toLaura_T

Endo specialist told me raised ca125 is common with endo, and indeed many other conditions which inflame the abdominal cavity

rosesinbloom profile image
rosesinbloom

Yes, actually mine was diagnosed through my CA125 being elevated on a blood est taken due to stomach problems.

I had to be referred for a scan due to elevated levels and there they found an endo cyst during the scan.

I looked it up and it's a common reason for it to be elevated.

emlouben profile image
emlouben

Yes , I had a blood test it was raised to 440, they sent be for a scan and the to consultant.

5 laps over 5 years and a hysterectomy in the sixth year due to endo and severe pelvic pain , I am back to square one just as much pain , only option now is removal of ovaries but I am scared to go down that route as when they gave me zolodex i was soooo depressed and anxious I think I need the oestrogen to keep me on a happy balance.

Laura_T profile image
Laura_T

Thank you all for the information. You’ve put my sister at ease. Not even the GP could give answers. Hopefully appointment Friday with shed some light on it. It sounds like we are all suffering from this terrible disease x

Emmyeve profile image
Emmyeve

Definitely! Any inflammation in there can raise it

Mott14 profile image
Mott14

Hi mine were elevated to 87. They should be under 30 i think. I had 2 scans because of endo symptoms. They found an endometriotic syst, which goes with endometriosis. They said levels can rise for lots of different reasons, even period cycles. Also endo.

Popetta profile image
Popetta

Hello Laura T,

Can I ask how you go about requesting these type of tests? for example can you request them directly from your GP or does it have to be a gynae or done privately? This is still a learning curve for me.

Laura_T profile image
Laura_T in reply toPopetta

Popetta I’m sure you go through GP and request the blood tests. They can advice on what blood tests you need then x

Linley profile image
Linley in reply toPopetta

I had my done privately when having company medicals -it was around £75 extra but put my mind at rest as my Gyna informed me that ladies who have Endo are slightly higher risk of ovarian cancer. I have never asked my GP but now I am not with that company anymore will have to go to my GP and ask

Narran profile image
Narran

Yes mine raised to 7000 when my cyst ruptured.

Narran profile image
Narran

So can be endo related

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