Worried, dismissive doctor

Hi all. I was diagnosed with a 4cm complex ovarian cyst on my right ovary in June after trying to find the cause of my severe lower back pain. Doctor was fairly sure it was a dermoid cyst but wanted to wait and see if it resolved on its own. When I asked if it could be anything else, she was empathic that it's not cancer because of my age (late 20s). However, because I was still nervous she did give me the CA 125 blood test which she told me came back normal. I was put on birth control pills for one month, and I just went back for a recheck. The right cyst resolved, and apparently there was free fluid around the ovary indicating a recent rupture, however, I now have a similarly sized cyst on my left ovary. My doctor now thinks I have endometriosis. She also revealed my CA-125 had been 31, which is a borderline result (not quite as normal as she assured me).

Other than the back and pelvic pain I've been experiencing the past few months, I've never had any other symptoms of endo. My periods have been light and short, not especially painful. No irregular bleeding EXCEPT the past few weeks which I think could possibly be a result the rupturing cyst or having taken birth control pills for only one month. I conceived two children with no trouble. So I'm skeptical of the endometriosis diagnosis. I have been placed back on birth control to recheck via ultrasound in 4-6 months.

Does this seem like a responsible course of action? I do have some health anxiety so it's hard not to think worst case scenario, but given the almost elevated CA125 and the lack of endometriosis symptoms, I'm feeling very uneasy. I'm not sure whether I should just let it go or if I should seek a second opinion.

7 Replies

  • Sorry, meant to say thank you for any replies!

  • Hi, If you are worried seek a second opinion at the very least for peace of mind x do let us know how you get on xx

  • Hi

    Yes as Kathy has suggested I would go ahead and get a second opinion to put your mind at rest . You are obviously worried to have found this forum and need peace of mind. You have got nothing to loose by getting a second opinion and can then hopefully move forward confidently. You are much too young to have all this worry hanging over you . Best wishes, Let us know how you get on . Love Kim x

  • If it were me, knowing what I know now, I'd ask for a repeat CA125 test in a month and an ultrasound to put your mind at rest. Elevated marker levels can be caused by inflammation in the abdomen- your rupture. My hospital uses a cut off of 0-30. However mine was 34 at diagnosis but not believed to be cancer.

    If everything comes back as normal then don't worry. I had regular normal periods.

    LA xx

  • This is beyond my knowledge or experience but I think it is important to put your mind at rest and a second opinion hopefully will be helpful.

  • Im in same sort of situation i not been right since december feeling sick bloating feeling pelvic pain harsh stabbing pulling sharp pains in abdomen back pain alterd taste smell leg pain slight lump in groin tender. Hip pain cant eat very much when i eat i blow up like a ballon periods gone short and light had all test done including ca125 first was 17 next was 14 but not always high for some peopleand some cancers nothing showed on first us but saw gyny ages later and he did another saw 3.5 3.8 cyst said in letter possible hemorrahgic cyst not liking the possible tho but luckely im having test for endometriosis wasnt convinced at first but people have all sorts of symptoms and not just with period but a least my cyst will be getting looked at and poss taken out i think i would have had to wait a fair few weeks to have another us to see if resolved im kind of assuming it has as my bloating as calmed down just uncomfortable endo can get worse as you get older aswell so im holding on to the fact thats what ive got but still have no app for op yet they dont seem to rush either 8 months so far and could have poss missed the cyst on the first us 7months ago no idea so quite scared to say the least op cant come soon enough

  • Hi there, I can't really add much to the good advice given except to say I wish I pushed it more when I started getting symptoms. It took 5 years before they listened to me. I have had 32 chemo so far at the brining I was only given 6 mouths that was with chemo.

    That doesn't mean that could happen to you but what I am saying is if you are not 100% confident with the advice & treatment on offer seek a second opinion. Ok we know are hospitals are busy but see if you can be seen by trained gynecologist.

    I hope you get this sorted out & do keep us up dated take care Cindyxx

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