CA125 / Possible Endo / Recurrent Ovarian Cyst

I am not quite sure where to begin as its begin.....

I am 36 and have had problems with heavy periods and clots (like chopped liver - sorry if TMI) when i was early 20's never got looked into; was given mfenanmic acid and then put on the pill (microgynon), which didnt really help. Had my daughter at 25 in 2007 and they found a 'complex cyst' on ultrasound which was a dermoid cyst. This cyst was removed when i had a c section as it was 10cms surgeon also removed most of the left ovary at the time. This seemed to help lesson the heavy periods and clots.

However over the last couple of years the periods have become heavy again and clotty however i have stabbing pains at ovulation and can have tender / pelvic pain (cat jumping on my pelvis is sore, horse riding can be unbearable) so i asked the GP to refer me for an ultrasound to see if the cyst had returned in November 2016.

I had a scan at start of November which showed a 6cm cyst that 'could have been a haemorraghic cyst with retracting clot but other pathology couldnt be ruled out' and a cyst of 3cms on my right ovary. GP referred my for a CA125 test which came back at 175 - i had a major wobble at this (we were due to go on a family holiday at the end of the following week with my daughter) GP sent me for urgent referral which would take 2 weeks under the Ovarian Cancer best practice thing and then told me just because she had referred me under this doesnt mean that she thinks i have cancer....and i wasnt to worry. She couldnt understand why i was stressed.

We made a Bupa appointment to see a private gyna who looked at scans and initial thoughts were recurrent dermoid cyst; nothing to indicate cancerous changes. That was until CA125 result came back. Queue more bloods which were other tumour markers and a CT Scan. I have been told all the other blood came back fine and that the results were good from the CT Scan; that my RMI (Risk of Malignancy is 175 and below the 200 cut off point) this was on the 16th of December and i now have a date to removed my Cyst / Ovary and left tube. He says he would put money on me having Endo which could explain the raised CA125.

I have received my appointment for my Lap through the post to remove the left cyst and ovary and to conserve my right ovary and look for endo. I will be totally honest there have been many sleepless nights between november and now and plenty of tears shed. Yesterday i was on the verge of cancelling my appointment as i dont want to know if it is something 'nasty' i dont think i have the head to deal with it and would rather not know.

I have no symptoms of the nasties; just pains and bloating around ovulation; migraines before period starts; heavy periods with flooding and clots (normal for me) pelvic pain during heaviest days of my period. I cannot speak to my husband as we do not want my daughter to worry so feel as though i am bottling these things up at the appointment in Dec they did give me the option of watch and wait 6 months as i have no OC symptoms and they would get a Gyna to do an ultrasound and take it from there.

Sorry for the long winded message

4 Replies

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  • I am really sorry you're going through this. I just wanted to let you know that I had my CA125 taken repeatedly back in 2015 before I was diagnosed with endo and it was always raised - I had counts of 119/85/107. The possibility of cancer was floated but my initial scans were clear. I was finally diagnosed with very severe endo in jan 2016 but those 6 months while I waited for a diagnosis were absolute hell.

    Please let them do the surgery and confirm the endo. I know it's hideous and all you want is for it all to go away, but this is not going to get better unless you get treatment.

    Take care of yourself. x.

  • Try not to worry to much, my CA125 levels have come back around the 150 mark and as soon as I googled the words CA125 cancer and tumor stared straight back at me !! I am such a worrier and like you I had many sleepless nights. I have had a diagnostic lap back in December and it has been confirmed that I have severe endometriosis hence the reason for such a high ca125 level, please go ahead with the lap as they do normally confirm Endo straight away.

  • I think I'm anxious as well with the cyst although hoping his initial thought is just a recurrent dermoid. Heads a bit of pickle at the moment

  • Totally understand - I have a cyst on each ovary, mine are chocolate cysts or endometriomas, the symptoms you have described are very similar to what I get, although I have had a coil fitted which has really helped with the bleeding. I really hope you can try and relax very soon.

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