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Raised ca125 - Feeling a bit fobbed off

7 replies

Ashdown17 · 05/05/2024 13:01

Wondering if anybody has experienced anything similar. I went to my GP a couple of months ago with digestive symptoms like bloating, constipation and nausea, and quite unpleasant reflux, along with unintentional weight loss. All my tests came back clear for things like inflammation etc, only my ca125 level was high. They took it again a couple of weeks later as my GP was concerned the first tests were too close to my period. In the next test the level was higher, so I was referred for an ultrasound.

The scan just showed two apparently normal cysts but there was no suggestion that those were the cause of the ca125 level, so I was referred to a gynae consultant.

I'm now just feeling a bit silly because I waited four weeks for that appointment and she seemed absolutely baffled as to why I was even there. She didn't examine me (although I'm not sure what she would have been able to do) and referred to the ca125 level as a red herring and told me to go back to my gp to get some laxatives and omeprazole prescribed to ease my symptoms.

I know it is a sort of non-specific marker and I do think it's likely something else is causing it but I honestly feel a bit crap that because my symptoms are digestive she kind of implied I shouldn't have been there. She even said "is there anything actually gynaecological I can help you with today?" which I found really irritating - It's not like I referred myself to her!

Anyway I suppose I was just wondering if anybody else had a non-gynae related / maybe a benign cause of raised ca125? Experiences? The "normal" ultrasound was reassuring, but I'm just getting so anxious between all the waits for these appointments and not really getting any answers.

OP posts:
Ashdown17 · 06/05/2024 18:33

Anybody?

OP posts:
poorbuthappy · 06/05/2024 19:49

What are your actual levels?

teaandtoastwithmarmite · 06/05/2024 19:50

I have endometriosis and raised ca125. It affects my digestive system as well

Ashdown17 · 06/05/2024 20:37

poorbuthappy · 06/05/2024 19:49

What are your actual levels?

They are actually not anywhere near as high as I've heard some other women describe theirs; the first test was in the 50s and the second was in the 70s. Haven't had the results of the third test yet though.

OP posts:
poorbuthappy · 06/05/2024 21:07

How big are the cysts?
I would expect you to be monitored regularly if the levels keep increasing. And especially if you start getting pain.

Completely unreasonable of them to speak to you like that though.
Why am I here? Read the referral?

poorbuthappy · 06/05/2024 21:08

And what's a normal cyst?

Ashdown17 · 06/05/2024 21:29

poorbuthappy · 06/05/2024 21:07

How big are the cysts?
I would expect you to be monitored regularly if the levels keep increasing. And especially if you start getting pain.

Completely unreasonable of them to speak to you like that though.
Why am I here? Read the referral?

So one of them was a collapsed corpus luteum cyst, which I've been reassured are quite normal, but I've been feeling like a bit of a div for not querying about the other one ever since! The more I think about the appointment the more annoyed I get about it to be honest.

Thankfully my GP has been great so I guess I can follow up with her again, but I've absolutely no idea why the consultant even bothered sending me that appointment letter if she was just going to tell me I needn't be there - she only agreed to test my blood for it again because I suggested it might be a good idea!

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