Endometriosis UK
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Ca 125 (yes the dreaded!) high during period and Crohns disease

Hello all,

Signed up after high ca 125 reading of 89 today. Have lots of symptoms of ca mostly because I have Crohn’s disease (similar to IBS) and assumed symptoms were related to that.

Waiting on ultrasound. Worried as everyone else but wondering if IBS or bowel inflammation has increased ca 125 for anyone else. I have bad pelvic pain and feels swollen on one side.

Will update when I get results. Just trying to work out likely causes at this stage.

Much love and wishing everyone well xx

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Hello, firstly don’t worry, secondly did you say you were on your period when you had test done? If so, this can cause elevated readings of CA125. Mine was 267 and I wasn’t on my period. Turned out I had large fibroids and endo just inside the womb. You will be fast tracked because it seems that is protocol but hopefully it turns out just fine

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Bless you. Do you take any Medstead for chronic? ? I.meant at my wits end with pain& burning of the bowels/ constipation /dioherra😢😢

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Chrones I mean😢

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Missymo I was on infliximab but taken off as kept getting infections every month. Now waiting on new medication My symptoms are tummy/side/pelvic pain. Bowels are fine which i weird. But so much pain that I've been given tramadol! Do you have experience of meds for crohns? Any advice on med options?

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No scottishworbiter I have no answers that's why I asked you😢😢keep well.x

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My sister had this last year and after an op to remove one of her ovaries it turned out that it was endometriosis. Her gynaecologist told her if it was something worrying the ca125 levels would have been much, much higher.

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Thank you all for you replies. I had scan today and everything was clear apart from a cyst which has to be monitored. My Ca125 had gone down to 8! So it must have made a big difference on my period. It seems crohns/IBS has very similar symptoms to pelvic issues. Wishing everyone the very best xx

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