Anyone diagnosed just from pain, no bloating and normal CA125?

Hi, I just wondered if any of you with ovarian cancer had pain as your only symptom? My ca125 is apparently normal and I'm slim with no bloating/distension but I've had pain in my right ovary area for 6 months now which is not severe but is constant through 24 hours a day every day of the week. It doesn't change according to what I eat or drink but is more uncomfortable in certain positions or if the cat jumps on or lies on my lower abdomen. I'm expecting doctor to dismiss OC as a possibility as my bloods were normal and I have no other symptoms but I want to be sure it's not a possibility, so if anyone has any examples that match mine I'd feel better equipped when I chat to my doctor next week. Thanks.

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  • The CA125 test is not a diagnostic test and should just be one test done with others, plus taking other indicators into consideration.

    I had a CA125 blood test result that was within the reference range (35 and under) - some types of ovarian cancer give false positives and some give false negatives. CA 125 can also be influenced by other conditions, that's why other Symptoms are all taken into account. Pain can be a symptom, not everyone gets bloating - lack of appeitite, losing weight, increased urination, wind! Lots of symptoms that can also be attributed to other conditions.

    Discuss everything with your doctor, keep a track of your issues and make sure you keep a note of dates (I think you have).

    There are still other things that it could be so try not to worry- keep vigilant and ask your doctor maybe for an ultrasound scan .

  • Hi

    So glad to hear your CA125 is normal but you are investigating what is causing your pain

    Maybe worth you talking to the overcome helpline to get some advice about how to get the correct referral to eliminate OC . You will probably need a Gynea referral for an ultra sound but check with them .

    Be firm and confident with your doctor and stress you know something is not right and you want answers as to what it is .

    The difficulty with diagnosing OC is that our symptoms are often missed or confused as something else. I had no symptoms , apart from weeing more frequently but put this down to getting older at 54 but my stomach then extended over 3/4 days with ascities and was then an emergency and diagnosed with stage 4 !

    Not telling you this to frighten you as the chances are you do not have OC but to help arm you with info to push for a referral with your doctor .

    There is also a good symptoms info sheet on the overcome site you can take into your doctor .

    Good luck with getting your referral and investigating what is the cause of your pain .

    Let us know how you get on. Best wishes Kim X

  • Hi,

    I had pain and no bloating, my stomach was completely flat, but I did feel very unwell all the time, the pain was pretty much there all the time, with permanent indigestion! it was caused by a grapefruit sized tumour pressing on all the bits and pieces down there, because I was so slim I could actually feel it just below my belly button. I was dismissed lots of times before I was diagnosed, anything from food allergies to menopause were suggested, but when I finally had the CA125 that was slightly raised, alarm bells rang although I didn't get a definite on cancer until after the surgery.

    What I would say is if you feel something is wrong push for more tests, it is probably not what you are thinking but any pain should be investigated.

    Take Care

    Andrea x

  • Thank you very much for your replies. I'm fairly relaxed about it at the moment as I think the chances of it being cancer related are tiny but I don't want to be complacent. I remember the exact moment the pain started which was on impact after a fall from a horse, i assumed I had somehow jammed my elbow into my lower abdomen as I landed on it (who knew I was so flexible!) but then months went on and it eased slightly and then built up again to where I feel it constantly and getting worse. I think cancer is unlikely to suddenly show itself just because I fell off onto it! The nurse practitioner seems good so far, she gave me blood and urine tests and an overdue smear and swabs to make sure it's not just an infection. We are meeting in a week to discuss results and she mentioned possibly booking for a scan, so I'm happy she is being thorough. Oh boy did it hurt when she pressed on my right side near hip! I can't seem to feel any sort of lump myself when I prod myself. It could be a grumpy appendix or something.

    Anyways, I will ask for a scan to be sure it's ruled out. Thanks so much for taking the time to answer. The more I read these pages I actually get less worried not more as I realise how brilliantly people deal with adversity.

  • Even if your doctor does rule out ovarian cancer just on the basis of the blood test (which he shouldn't) he still has to discover what the pain is. Do insist on that.

    In someways your post is extraordinary to me because I first went to my GP because I had a pain dismounting from a horse and I know exactly when it happened. The pain continued but wasn't severe and I thought I had reignited some pelvic fractures I'd had as a result of being knocked off my bike some nine years earlier. However, I rush to add I was also spending a penny frequently which unfortunately I'd put down to age as I had no idea of its significance. No bloating, no feeling full after eating. When my GP ascertained that I'd come straight from Pilates just before seeing him, he asked me to park my "reigniting" pelvic fractures idea for a moment and explained that the examinations he was about to give me might mystify me.

    I was lucky he was right on top of things and I was whisked through the system thanks to him. Needless to say I've given up self-diagnosis and now stick to just the facts.

  • Glad you're pushing for further investigations but also that you're taking it all with a pinch of salt. Best way to be. I had pain but looking back, quite clear distension. CA125 was normal but scan confirmed a melon sized tumour (mine was a borderline mucinous). Good luck with the check ups and keep us posted. No point panicking unless you need to and even if it is something 'sticky' it's more than likely to be benign & manageable xx

  • Hi I had no symptoms at all. Just in one day my stomach became bloated, I went for an emergency scan and that was the beginning of my OC stage 3 journey. Up to then I had no symptoms at all. This is probably not much use to you as a reply but it highlights OC really is a very silent cancer.

    Wishing you the very best outcome , xx

  • I had pain in my right side, but CA125 was normal so doctor dismissed OC. My advice would be to insist on them exploring your pain and finding out what it is.

  • Thanks very much for all the replies. Apparently the swabs showed I've got a bit of infection (BV) which she has given me antibiotics for. From google I'd be surprised if that's the cause of the pain, and I don't have any typical BV symptoms, so I'm assuming it's coincidence but I guess I'll know after the 5 day antibiotics. I'd be happy to be proved wrong!

    Interesting that January-2016 also had a horse/pain link, sounds like a similar story! Self diagnosis is rarely useful! I actually did speak to a doctor 2 weeks after my fall, it was about something else but I mentioned the pain and they told me if it was anything serious I would know about it and not to worry.

  • I hope your pain is not due to oc, but as it is persistent, you naturally want to know the cause. As others have said, ca125 is not diagnostic. I recently had tumours removed. During the 4 years I had them, my ca125 never went above 13, & normal is 35 & under. It can also be raised for other things occasionally. Di

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