Hi, does anyone know if it is worthwhile having a CA125 test to try to determine if there is any endometriosis present?

I had one before hysterectomy, but am wondering whether this would help diagnose some abdominal probs I have been having, gps seem reluctant to refer to a specialist, after having an ultrasound where nothing showed up, although i hear this is common with endo.

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  • Hi

    It is common that CA125 can indicate endo or any similar problem, but not always as mine was absolutely normal and when i had the lap they found endo.

    So it is not certain that the result will give you a diagnosis. x

  • Thank you jojo for your answer, I suppose it depends, I know that you can have active and inactive endo also. I know I have a problem with my left side which is where an endo cyst burst 8 years ago, but don't know whether it is scar tissue or endo, although I always feel run down and seem to be constantly on and off antibiotics for the last 7 years.

  • Hello Spice47. Before my hysterectomy I had raised C125 tumor marker. It was very high and had to see a cancer specialist but my Gynae then decided to put me on zoladex for 3 months as he said endo can raise the marker. When I went on zoladex the tumor marker went down confirming that the endo had caused this to rise. Hope this makes sense :) I would ask for a blood test to check the C125 level.

    Hope this helps :)

    xx

  • Hi, my CA125 is really high :( honestly dont think its changed at all over the last 6/7 years...

  • Thank you Wendy and Nicky, a gp did mention this but has now left the practice, so will consider asking, nicky, did they send you for any investigations to find out why it is so high, and has it had any effect on your health. I seem to have lots of infections and antibiotics which are getting me down, more so because I don't know why I am having them, it started with bladder infections and now I seem to get throat infections, this time with a really sore tongue and tingling in my neck that was quite worrying xx

  • I tried to have this done with a private screening company but they refused, apparently blood tests have to be done with other screens which can cost hundreds. They also said it was as a preventative measure and if you already have been diagnosed with problems you can't have it done.

  • Hi spice, don't know why I don't see your reply months ago!! I'm sorry

    I wasn't aware of any tests available I always thought the ca125 linked to cancel but then cos I've severe Endo that I was assured it was so high because if this reason

    How are things with you now, I'd be really interested to know

  • Hi Nicky, really sorry I didnt see yours either until today, I didnt realise you could check on everything you have written by clicking on your highlighted name. Things are not quite right, strange continual bloating in abdomen coupled with sudden weight gain and chest pains yet ultrasound revealed nothing, have not asked about CA125 at GP's yet, have tried to lose weight but can't, on a partially liquid diet which helps a bit, thank you xx

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