testing for CA 125

[foursimplewords]

is this to rule out ovarian cancer as the symptoms can be similar, or is it used for something else? I've heard it can be raised in people who have endo? If it comes back normal - will that be used against me in terms of further treatment/severity?

[girli1111]

A raised level may speed up investigations. Mine came back high at 473, after large cysts had been found on scans. an audibly shaken gp phoned to tell me I was being referred urgently to gynae oncology (ie looking at cancer), but it turned out NOT to be cancer. Endo specialist told me that any abdominal inflammation (so including endo) can cause a raised level. Try not to worry (hard, I know!)

[foursimplewords in reply to girli1111]

thank you x alternatively i'm worried about it coming back normal and them not treating me as a priority!!

[girli1111 in reply to foursimplewords]

it does seem that waiting lists can be long at the moment, , but as someone who has been through the worry of the urgent referral pathway I wouldn’t wish it on my worst enemy... I had almost a month of repeated mri and ct scans, concluding in surgery, and I was terrified until cancer was ruled out after surgery. So please try and feel relief if you’re not referred with any urgency.

[foursimplewords in reply to girli1111]

thank you that's a good way to look at it. I'm sorry to hear about your scare too. x

The waiting is the worst part, i can't keep going through painful periods like this

[girli1111 in reply to foursimplewords]

In which case keep pressing gp to chase up referral if possible.

[foursimplewords in reply to girli1111]

my area has moved to a new e-referral system, and there wasn't ANY appointments available to book and it said minimum wait 25 weeks! I can't bear 5 more periods

I am seeing her on Tuesday anyway so I may push for help with getting it through on mental health grounds. I can't keep living like this

[girli1111 in reply to foursimplewords]

Wow, that terrible! I hope you get some supportive assistance from gp x

[foursimplewords in reply to girli1111]

so grateful for the NHS don't get me wrong and no way I could afford this privately but I just feel so helpless