What does elevated CA125 mean?

[Blue_Bird0]

Over the last 5 years my symptoms have severely progressed (previously been told by GPs that it was food intolerance and then 2 years later severe IBS as all tests "normal" - constantly just giving more prescriptions) and recently found out that symptoms could be because of bowel endo ... told GP about my family history (bowel and ovarian cancers and endometriosis) and they arranged a CA125 immediately... results came back and it's elevated so now they think endo, I get very irregular periods, last year had 6 in a month and a half and then go up to 3 months without any... but before was told it was normal/unrelated to gastro symptoms...

Does anyone have any experience with this? Would this be consistent with endo, I've looked it up and I have loads of the symptoms... I have an ultrasound next week and hoping I'll finally know what's wrong after being told for years that there's nothing more they can do and it's "stress"

[TennisAM]

Hi,

I'm so sorry you've had to battle to get to this point, it's very upsetting and I feel for you.

Raised CA125 is a general indicator of many things, endometriosis is one of them. Some women with severe endometriosis (deep infiltrating endometriosis) have raised CA125 levels. If the bloods were taken during a period, then even that could raise the levels.

I has severe disease and my CA125 levels were normal despite this so it's not 100% reliable.

I am sorry to say that most endometriosis is not seen during a ultrasound. Obvious things like endometriomas (chocolate cysts) on the ovaries are seen and sometimes other endo. The issue in the UK is most sonographers do not know how to look for endometriosis on an ultrasound. Some BSGE registered endo specialists are better at seeing endo via an ultrasound but on the nhs a normal sonograper would do the ultrasound.

Scans aren't always reliable to know if you have endometriosis. Sometimes MRI scans are as low as 60% reliable to find obvious endometriosis. Only 5mm or higher in size are seen.

For example I've had severe disease, before both operations, I had an mri scan. Neither MRI scan showed severe disease but that's what was diagnosed on both occasions.

The main way to know if you do have bowel endometriosis is to have a experienced BSGE registered endo specialist take a look during an operation.

Do you ever have rectal bleeding? Especially during your periods?

I hope there is a BSGE endometriosis centre near you. If you Google that you will find the bsge website to see local centres. If you're anywhere near London/Birmingham then feel free to send me a private message as i have some names to avoid.

You definitely need a referral to a bsge endometriosis centre so they can decide what's going. This is clear from the NICE endometriosis guidelines, I would insist on a referral promptly. The GP has messed you around for 5 years, it is important to ensure they do not continue.

Obvious meds that cause irregular periods/high prolactin are: PPIs (omeprazole, etc), metroclopramide, fludrocortizone and famotodine but there are many others.

Have they done hormone testing to check for PCOS? That could cause irregular periods. Some meds can cause it, ask you pharmacy to check this both for the possibility of irregular periods or if the meds are causing high prolactin. Have they checked for high prolactin levels? This can cause irregular periods? Are you 35 or over? It could be perimenopause etc.

Hope you get the answers you need and some relief.

[Blue_Bird0 in reply to TennisAM]

Hello, thank you this is so helpful!

I've got a lot of those symptoms, and I'd never realised how cyclical they were until I had to do a symptom tracker and realised I have about 5 good days a month right in the middle of periods... I'll definitely try to push for some other tests if nothing shows on Tuesday and try to get a referral to BSGE endometriosis centre - unfortunately as I live in a town in Wales I'm quite far from the nearest centre although I should be able to get to one with a train.

I was on omeprazole but only recently put on it, and I've had irregular periods since before my GPs thought it was lactose intolerance/ibs... I'll try and get it looked into also

[TennisAM in reply to Blue_Bird0]

Let us know how it goes if you are happy too. x

[Blue_Bird0 in reply to TennisAM]

Yes, will do x

[RosieFalkor]

Just to add a bit to what TennisAM has already explained so well…my CA125 was raised (it goes between 45 and 85) but Endo wasn’t seen on ultrasound until I’d had 7 scans, and barely seen on MRI. I had a laparoscopy and severe Endo was found on my bladder, rectum and diaphragm. It can be a long and tricky process getting diagnosed.