Worried & fed up

Hi, I'm new to this & had some worrying results today. Have suffered with pelvic pain for some time, went to the docs beginning of the year, CA125 test done, slightly elevated over the norm. MRI & 2 ultrasounds later was told had ovarian cysts, fibroids & Endometriosis. Went for a CA125 again yesterday and doc rung today wanting to see me (Panic set in) went to see her & CA125 now very high, possibility of Ovarian Cancer but could be due to benign conditions. Being referred within the week to be seen by consultant. My pelvic pain has been particularly bad just recently along with other symptoms. If anyone could give me some positive advice, would appreciate it, as it's hard not to think the worst

8 Replies

  • Hi Mariek, can I ask how high it is CA125? (so I can compare it to mine)

  • It is now 40 but from reading I have done on this test, it really does vary for individuals. Some people remain low with endo, OC but others can be in the thousands! I think being called into the doctors today after only having the blood test yesterday freaked me out & the fact she mentioned the "C" word. However despite being told I have endo several months ago I was not told were it was or what stage so hopefully will know by next week what is going on

  • Hi Mariek,

    I am going to tell you MY EXPERIENCE, I AM NOT A DOCTOR.

    I went to the doctor as I noticed something jumping inside of me whilst running, we found out a 10 cm cyst. CA125 test result was on 135. My GP freaked out and he mentioned the C word as well.

    I went to a specialist that week, and a MRI was done to know more about the cyst and to repeat the blood test. The doctor explained to me, that CA125 is not exclusely related to the C word and for those cases usually she would find thousand as a result. I did some research and CA125 is increased when you have some kind of inflammation in the pelvic area, and this can be caused for many reasons (benign reasons as well).

    My point is, they always have to tell you the worst scenario (I have had to deal with the idea of having my fallopian tubs cut off because of the endometriosis) but that doesn't mean will be your case. At the end, they were able to remove almost everything and all my organs are in place with no colostomy (one of the other risks in my case)

    Hopefully, everything will be ok :-). Make sure you ask everything to your doctor, that you like him/her. I also read "Endometriosis for dummies" and it helped me to understand a lot of what my body has been feeling over these past years.

    Wish you the best and sorry if any mispelling. Thys keyboard is in other language.


  • Thank you Erica for your experience it does help to know how others have dealt with the worry of it all. Would just like to wake up one day with no pain & plenty of energy :)

  • Hello I recently had a CA 125 test done after admission to hospital from a twisted ovarian cyst. I also had a complex cyst on the other ovary that looked suspect. My results came back at 81...I was convinced it was ovarian cancer. I was referred to an oncologist and scanned. They found my right ovary was possibly fused to my womb, a hydrosalphinx in my left tube and another cyst on my right ovary. The consultant said it was unlikely to be cancer and suspected Endo. I rang my GP and spoke to him regarding my concerns and he said as the first CA 125 test was taking while I was on my period, it can raise it. The second test was done mid cycle and it dropped to 49.. still higher than I'd like but it had dropped by quite a bit. Fast forward to now, cancer hasn't been ruled out but the CA 125 test can be quite high in endo sufferers. I'm not too worried anymore. I'm due to have my surgery a week from now and a biopsy will be taking then. I know it's as scary as hell but please try not to worry too much. They have told me any kind of pelvic inflammation can send the test numbers up and it's more likely to be due to endo than cancer.

    By the way, the complex cyst that had some masses and looked suspect has completely gone of it's own accord. I am so looking forward to surgery next week and get some answers. I wish you all the very best.

  • Thank you & all the best with your surgery :)

  • I first went to the gp as I was feeling bloated, and having done the dreaded google search of symptoms was worried it was OC. The GP did CA125 tests which came back with a slightly elevated reading which sent me into a panic as well. I've had a series of CA125 test since which have all stayed around the 40-55 mark. My GP said that he would expect to see if in the thousands if it was OC and that higher than the normal range can be related to hormonal changes. From my reading around the subject it seems to also be linked to endo. When I saw the consultant the first thing she said was that I didn't have cancer, it's as likely to the endo. No one had mentioned that up until then. So try not to worry, there are other reasons why CA levels can be outside the normal range.

  • It was the doc who mentioned the possibility of OC and asked me to go see her straight away which panicked me. I don't blame her though, she has been really sympathetic and is being cautious which is what we want isn't it? Better than being fobbed off like I have so many times in the past. The last consultant I saw who told me I had endo didn't even tell me where it was or how much I had, he gave me tablets to try which have been useless and I was due to go back in November, but my doc has now fast tracked me and go on 22nd oct, so am going to ask for more clear answers this time.

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