Raised CA125 tests - unusual symptoms - ultrasound booked

Hi there. I'm new to the site. I'm really anxious and nervous, and I just don't know how to cope currently. I feel like I'm in limbo. Late last year I started getting flair ups, which included indigestion and feeling sick, constipation and bad pain in my middle tummy which went over the my right hand side. It would then go back to normal, and I'd be fine. I had about 4 of these flair ups from late last year up until today. The last flair up was really intense and lasted 4 days, the same thing happened constipation, sickness, middle tummy pain and then left side pain around hip area. Last couple of days of the flair up, my stool was yellow diarreah. I went to drs and had numerous tests, and the drs suspected I had gallstones. When I was initally tested for inflammation my placelets were a little high, but my last blood tests my placelets were normal and upper abdmoninal scan came back fine. I went back to the dr, because since my last flair up, for a month I kept getting this niggling pressure pain on the right hand side of my belly button, and also pain on my upper right hand side . I also had the tinyest little bit of blood in my stool on about 4 occasions since last year. The dr decided to take another full blood count, stool sample (which came back fine) and she decided to check on my overy, just incase. Last week I had a call from my dr, and she sounded pretty serious and explained that my CA125 test came back abnormal. I was really shocked, because I just didn't even think it could be to do with my ovary, I thought it was more to do with my bowel/ gastro. Since last friday I've been unable to hardly eat, I'm losing weight mainly because I've been eating so much healthier since I was suspected gallstones, but I'm really hardly eating anything the last couple of days since my results currently cause of the stress. Last couple of days I've been having yellow diarreah again, similar to what I get at the end of the flair ups and I feel like I'm getting indigestion more often the last month, and weeing a bit more. I'm also getting pains on the bottom right, but really bad sharp pains at times on my upper right abdomen. Today I woke up and had diarreah, and I felt so nausious, and more pains especially top right abddomen, but I'm also feeling like a pressure on the right hand side of belly button that I've had since my last flair up a month ago. I don't know if it's stress that's making it all worse etc, but I'd really appreciate some advice. My Dr has sent an urgent referall for an abdominal scan the week after next, and I'm a mess. I'm so scared of what they'll find. I'm 36, and I just didn't think that ovarian cancer could strike, especially with these types of symptoms. I feel weak currently, probably because I'm not eating but I feel like every symptom I'm getting makes me feel worse, like they're going to find something bad. I am ovrweight, and I wadn't eating healthy before all this started last year, so I'm worried I haven't helped matters, but the last 1-2 months I've been eating really healthy, so I can explain the weight loss, but I just can't understand what's going on within my body. I'd be grateful if I could get a response, and anyone who's possibly been in the same kind of situation. 

  • That’s very reassuring - great news that the Ca125 has gone down. I feel the same, after what happened with me and what I’ve heard from other women. It just doesn’t seem like a reliable cancer marker at all. Although my scan was clear the dr is wanting me to get another CA125 test to see if it goes down. I was menstrating so that could have played a part. Anyway thanks for the update, it’s always great to see how you’re all doing.

  • Hi Sansa,

    That’s great news about your CA125 levels reducing, that’s a great sign. Now that they’re certain it’s not something sinister I hope that they can give you some treatment to help relieve the symptoms of the endometriosis. 

    I had my gynaecologist appointment last week, it went well. She’s certain that it’s not cancerous which is great  and that the tumour is a fibroid... it’s also on the outside of my womb which means it won’t effect my fertility which is something I’ve been really worried about! I’m going for a CT scan on Thursday so that they can be extra thorough and certain that is what it is. She said that because it’s about 7cm in size if I want it removed it’ll be quite invasive surgery.. so I’ve just got to weigh up how long I can continue with the sudden urgency to wee!! I’m also not sure what the bloatedness and tenderness there could be down to.. guessing if all ok with scan then back to doctors for other blood tests to see if it’s bowel related... sorry if that’s TMI!! 

    Hope you’re all doing well and able to enjoy some of this beautiful sunshine <3 I second what Sansa said about the support you lovely ladies have given me over the past few weeks - It’s been invaluable, thank you!  

    Xx

  • Hi J-liz,

     

    Thats great news too I am sure you are relieved.  I hope you get the best outcome whether that be with surgery or not.  I also still have the bloatedness and trouble with IBS so I want to concentrate on settling that down before my next appointment because stress can cause a lot of IBS trouble.

    And yes Nica00 - menstruation can cause your level to rise but it is reassuring if it is coming down so another test is a good follow up by your doctor.

      All the best everyone x

  • Little update on my scan

    she said my bladder wasn’t full enough for the abdominal to be clear. Transvaginal was hard I had to lift my bum up so high I was doing a crab almost lol! She had a look around both sides, she took measurements of a grey circle on my right side, but not my left? Was she measuring my ovary? She said ovaries looked okay but she was whispering to the other nurse while I was getting dressed so that was weird. And kept saying I need to wait for the specialist in 5-7 days when I asked more questions. Frustrating but I understand it. 

     

    Im getting much more pain in my right pelvic area and back, the pain under my ribs is getting worse too but it’s not constant like the pelvic pain. 

     

    I just want answers  

     

    any ideas what she was measuring? And why only one side if it were ovaries? 

  • Hi wanted to post a reply. I am in same position kind of. Been having lower pelvic pain like a labour contraction but bearable, irregualr bleeding for over a year, vomiting, constipated one day then normal. Ultrasound was clear, my ca 125 was only very slightly raised at 37 first time, 2 months ago now today it's 51 :( but the pain although still lower but bearable I have pain upper right area it's UNBERARBLE, I have a brain condition so on very strong opioids and that's not even touching the pain. But my mums a nurse and said pale or yelllow stools usually been gallstones. And all ur symptoms, and is very painful, I really hope u find out what's wrong xxx

  • Hi 
    I'm in a dilemma - no ovaries due to full hysterectomy and I've got exactly same symptoms as yourself. My doctor is baffled unless I've not had the ‘ full removal’ as I thought. High CA125 showed in blood test, stool sample fine but before my hysterectomy I had fibroids and endometriosis which can re occur at different sites even after a hysterectomy. I've read every medical report in last few days so elevated levels can be for different reasons. I'm waiting for my appt for ultrasound and a week has passed already. 

    I'm feeling tired and bloated most of the time. I don't think my her is helping so reduced my dose to 1 tablet every 2 days. 

    Very anxious about whole thing and if I find an ovary remnant was left behind and my condition serious a medical negligence case will be pending. 

    Hope you managed to get the positive outcome you hoped for and 
    Solved your mystery. 
    Fingers crossed

    K