diagnosed with coeliac disease a couple years ago after suffering bloating for quite some time. Due to age (45) GP threw in CA125 for good measure, though no other symptoms to indicate problems with ovaries and was not particularly worried. First CA125 result was 43.9 and I was referred to gynae for pelvic scan. Scan results - ‘unable to visualise ovaries’ and I was discharged as CA125 only slightly elevated. Hospital advised GP to repeat tests. Repeat test - CA125 was 40. Still slightly elevated and although now following gluten free diet, bloating still persists. GP made new referral back to gynae but it has been declined as levels have come down slightly and are ‘no concern’. Not particularly worried at this stage as only slightly elevated and have read that anything from periods to being perimenopausal can affect CA125 but I’m due for repeat bloods again in January and wondering if this is something I should be pushing GP a bit harder about?
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lauram1978
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Your GP has done all the right things but it seems the hospital are not playing along.
Not being able to visualise something does not provide the reassurance you need.
While diagnosis in women under 50 is still unusual it is not impossible and your ca125 is elevated, even if it’s not by much. The crucial argument for doing some proper diagnostics now is that if you were unlucky enough to be diagnosed with OC your chances of being cured are much higher at stage 1 than stage 4….so why would they wait?
I would suggest getting GP to repeat the ca125 and refer you again if it is over 35. If they turn you down again go straight to PALs at the hospital and complain. We have far too many stories from people here about being ignored or overlooked by clinicians who could have got them diagnosed earlier and given them a better chance of survival.
I agree with the other ladies - it should be followed up. If they can't visualise the ovaries, they don't know that all is well. Another scan (CT and/or MRI) should be done for reassurance. And repeat bloods until you have some answers. Let's hope it is all down to the coeliac, but you need something definitive.
I wish I would have been this much attentive to my body changes as you !
Last January I had heavy cramps and my tummy bloated severely and my GP thought it was just air in my bowels and advised laxatives to move them. Thankfully he still advised ultrasound scan which I did 1 week later already in unbearable pains and huge belly (10cm more in waist at the same weight).
Doctor already saw tumor on my ovaries and ascites in my belly which caused bloating. Hospital took over and I was diagnosed in stage 4B with CA125 400. It did take 3 further ultrasound examination and 3 different doctors to get the diagnosis as my ovaries were hiding on the scan and they couldn’t believe I could get OC at 40yo.
They suspected tumor on right ovary. Only blood test, ascites sample from my belly and finally CT confirmed the diagnosis.
I believe my body was giving me signals, as I had horrible pains during first 2 days of period for several months already. I couldn’t take any pills as I was throwing them up and literally spend 24 hours on toilette. I started to have cramps also during run (in sudden need to go to toilette and then throwing up). I thought it is result of Covid or vaccines so didn’t raise it at GP. Although they did tell me they would never take these issues as OC symptoms.
So my point is, push for having clear answers and solutions! Is your body is your life !! And I am absolutely sure you will be fine btw; but have it on paper properly examined !
I agree with the others that you need to pursue this by pushing for a CT scan. My CA level was more elevated than yours- 85- but still described as “not terribly high” by GP. Ultrasound could not image ovaries, but CT- which still did not reveal all the disease, pointed clearly to stage 3 disease, subsequently confirmed by biopsy. I’d only had a few weeks of concerning symptoms. OC is notoriously difficult to diagnose, but best caught early. X
definitely push for further investigation. If they can’t visualise an ovary they can’t say it’s normal (although they do) I am testament to that. My left ovary couldn’t be visualised and my ultrasound scan was declared normal. My OC diagnosed 3 months later was in the left ovary. Definitely keep an eye on CA125. Take comfort in the fact that your CA125 is low, although in the abnormal range, mine was 1075. X
I went to my GP in September 2015 (aged 45) after suffering from very heavy periods and spotting in between, which was unusual for me. No other symptoms but luckily she was a newly-qualified woman and sent me for a CA125 test and a scan. My CA125 was only 32 but the scan showed a 5cm left ovarian cyst, which I was initially told was benign.
Anyway to cut a long story short I was scanned every three months over the following year, with the cyst waxing and waning, until eventually my GP asked to see a different consultant, who diagnosed a borderline ovarian tumour and aged 46 I underwent a total hysterectomy. Histology showed the tumour was actually an endometrioid ovarian carcinoma. I had six months of chemo as they found some cancer cells in my washings.
At the end of my chemo my CA125 was 10. I am currently seven years NED and although they wanted to sign me off I asked if I could continue having my CA125 taken, as although we all know it’s not an exact science, I feel it is all I have to go on, given I had no other symptoms apart from the heavy periods and obviously all my bits have been taken out now so that is no longer a thing!
I know how lucky I am to have been diagnosed at stage 1 - my consultant said if it had been a year later things might have been very different.
The upshot of all this is keep pushing! It is clear from my case that although my CA125 was only 32, this was actually high for me, and ‘normal’ for me is 10-12.
Finally I just want to say that I salute everyone going through this and thank you all for sharing your stories; I am fully aware that not everyone on here has been as lucky as me.
I understand your rightful concerns, but your GP has said he will repeat the test this month - I would wait for that test result before trying to push for a CT or any other scan. Another 3 weeks is going to make barely any difference to any possible ovary issues, but if its risen again, that's the time to push for a CT scan. You may find it has fallen to below 35 anyway by the time you have the next blood test and because you have coeliac disease, that's already a possible cause for your slightly elevated CA125. If you are really anxious about it and you have any money at all, then paying for a private CT scan with contrast is an option.
Hi. I had an ultrasound where they couldn’t see my ovaries and four years later I had stage 3b OC. My CA 125 was 8 at diagnosis. The highest it’s ever been is 20, after surgery. So you can’t go just by that. Get them to do a CT scan with contrast.
hi Laura, my first occurrence of Ovarian was in September 2018. I have severe pain in my abdomen and severe acid reflux for months. A friend of mine recommended celery juice in the morning and that drink for 20 minutes. I have taken all the anti-acid medicine and the only thing that helped me was celery juice. Over five years later I’m enjoying not having G.I. issues. I have been taking the salary powder form and it works as well. I am so thankful to my friend. Sending you love and prayers.
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