Endometriosis UK
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How many ladies have been offered the CA-125 blood test when they have presented endo symptoms to GP?

I am in an on going dispute with my former GP about how serious she took my symptoms and condition when I first went to see her and I read something quite recently during ovarian cancer awareness week that if a patient goes to their GP with symptoms of potential ovarian cancer then all GP's should now offer the blood test to try and early diagnose cancer. I know that endo symptoms are very similar to early ovarian cancer symptoms and was wondering how many ladies have been offered the test?

9 Replies

Hi Katt,

I've had similar problems with my GP and the hospital not taking my symptoms seriously! You end up thinking you must be going mad! Grrr.

I've been to the doctors loads of times and admited to hospital once and been to several gynae appointments and never been offered the test.

Not the most positive reply I'm afraid, but it's all I've got! Good luck with your dispute, hope the outcome is positive.

Dusty xx


I've had a similar experience too. I had a raised tumor marker and had to see the cancer nurse to prepare for the worse. Fortunately my Consultant decided to try Zoladex for 3 months and my turmor marker came down so obviously the endo was causing the raised CA-125. This is common. I hope everything gets sorted.


My GP sent me for an u/s after a couple of visits for my symptoms and it was the radiologist who sent me for the CA125 blood test after what she saw on the scan. It was raised, and have since been under the care of gynaecologists. My understanding is that CA125 is raised in endo as well as cancer so it's difficult to say how accurate it is in diagnosis - maybe that's why it's not offered routinely? Even so, you'd want to know they're exploring all avenues.


Never even heard of it. I was just fobbed off for six months and given only pain killers until I went to a and e. Then they told me to tricycle my pill. When that did nothing I had a lap and have been fine ever since - they removed the endo and I'm now just on antibiotics. Never been offered any tests like that. Just dozens of urine samples which showed nothing.


I have never been offered this by a gp. I have seen many consultants for endo and had 2 laps and not been offered it at hospital, that was until I had an internal and they could feel A lot of lumps. That consultant then checked my ca125 levels and had a scan. It turned out I had fibroids and an ovarian cyst. So, in my experience I have ever had the levels checked for the endo, it was only when I had the 'lumps" that they did it. As someone said, the levels are raised with endo and my consultant warned me they may be high before I got the results.


It does seem to depend on how good/bad your doctor is. Luckily my doctor is very thorough and as well as sending me for an ultrasound scan also also did a CA125 blood test just in case.


At the start of all my pain I was told either it was water or kidney infections, after seeing a urologist was told everything clear.

My gps (never see the same 1) then went through scans blood tests etc with nothing. This went on for a yr of me backwards and forwards, and eventually my main gp said wel do another scan a different 1 to what you've had and some more blood tests.

The scan came back clear but had raised CA125 he said your scan was clear so its okay but I want to do it again in a month, by this time my boyf was almost distrought thinking I must have cancer.

He referred me to a gastroentorologist, by this time I had been suffering with pain for 19 months and as I told the GP i was diagnosed with IBS when I was 15 and it was not IBS i was suffering with. He then said tell the consultant about the raised CA125 - I'm sure hel be interested! I couldnt really understand why a gastroentorologist would be interested!

Anyway the registrar I seen wasnt bothered just ignored me when I talked about it and said theyd do 2 cameras - 1 up and 1 down. week later I recieved a letter saying that I had an apointment for a CT scan that had come from Gastro consultant. my GP called to say CA125 second test was raised further and what had happened with the gastro, said I was having a ct scan and he said that was good there was not much else they could do than that.

Had scan, was told by registrar there was 1 cyst on my ovary but this was a normal monthly cyst and to go home and not come back again I was healthy and no need for any cameras.

I only managed to get my refferal to gynae because I saw a (woman!)dr never seen before and ended up crying told I didnt know what to do anymore I was worried about everything and in constant pain.

Whilst waiting for my lap I seen another female dr and she said they'd never been given any results from my scan or notes from gastro and raised her eyebrow when I told her about the cyst and the levels - says it all.

My scan was at the end of December last year and when I went in for my lap 3 weeks they excised 1 5 cm cyst on each ovary, severe endo and adhesions.

I havent seen my gynae since to ask all the questions about everything.

But does anyone know how quickly cysts grow? and is this why CA125 levels were raised?

my dr knew they were raised but didnt really do much about it.

My family and friends are all telling me I was neglected and should take it further as my life was affected so much, but Im not sure whether Ive got reason to or if its really worth it.


Thanks for so many replies so far. It is really interesting to hear all the different stories. I have never pushed for CA-125 test but spent 18 months with no one really taking me seriously after many years of struggling, worried I may have cancer. I had a Ultrasound scan over a year ago now that found nothing and altho my lap found endo scarring and adhesions I still worry sometimes about ovarian cancer.

I was in a very similar situation to you bophead about being neglected and my GP arguing with me over the phone that I had gone above her head without permission to have a private lap done as she refused to refer me to nhs cons at hospital saying it was only IBS. My friends and family were so outraged they persuaded me to make a formal complaint which I have done, however the GP practice are still not taking me seriously, and refusing to respond. It is quite time consuming and you need to remain committed if you make a complaint but there is a good organisation called ICAS which will help you through it.

I did it because I wouldn't want another woman to go thro what I experienced with my former GP, and its about time all GP's took us seriously. I know it is a bit of a one woman crusade but at least I feel I am doing something to help all our cause in raising the profile of this disease.


This is pretty standard procedure. When I first went and saw my consultant the first thing he did was arrange for blood tests inc the ovarian cancer one. It's just to rule everything out. Hope you get on ok xxx


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