Hello, just waiting on my CT and MRI results now....

Hi Nica, I hope this message finds you well! I'm wondering if you have had any diagnoses since your last message as I have stress related IBS and the symptoms are very similar to ovarian cancer, so I have had an ultrasound (which was clear) but my CA125 marker is 45 so I am being re-referred for an ultrasound and referred to Gynae so I can see similarities between your experience then and mine now. Thanks in advance for a reply if you would be so kind as to do so as I am a little worried at this time.. 

Hi there 

I have experienced very similar - CA 125 was 71, referred for ultrasound which was clear so waiting for next steps.  My symptoms have been constant fatigue and lower back ache (I thought it was perimenopausal as I am 45 but told it wasn't).   

I find these posts really helpful particularly when we are all in the same state of limbo so thank you for sharing.  I will let you know how things go, good luck with further testing post Christmas.

Hi D Prav

i have had similar symptoms to you had a biopsy high level of ca125   152

booked in for a ct scan

can I ask how you got on please thanks x

Hi d prav 

I have had similar symptoms 

my ca125 test has raised again to 152 

had a biopsy waiting on results and ct scan 

how did you get on in end pls thanks Diane 

Just wondered how you got on? I'm in a similar position but just at start with ca125 of 55. Thanks

Hello,

I would be really keen to know how people have got on with this.  I was admitted to hospital in November with sepsis and while there they found an increased CA125 level in my blood and saw a small cyst on my ovary which they didn't think looked too dodgy.  My CA125 has been tested twice since I was discharged and it has been 135 and 145 in my last two tests.  Had the US today and the sonographer said he couldn't see anything.  I have a bulky thick and odd uterus which makes scanning tricky but he said he had good visuals of both ovaries.  One was clear and one had follicles which looked normal.  

With my CA125 so high I am really concerned they will take the US being clear as the end of it.  Did anyone find an answer to what else it could be or did anyone find it was something not picked up on an us?

I've been having lots of tests over last three months, I had an ultra sound on 21st Jan which showed a lesion on my ovary, I've had diarrhea mostly over last 8 weeks, dull pain in lower abdomen and what feels like a hot water bottle strapped to my lower back. I've lost some weight and my appetite isn't great. I had the ca125 test done Wednesday and my results today are normal. 

Hello,

I'm a bit worried too! I am being sent for a laparoscopy as a result of high CA 125 levels. I had my iud checkup which involved an ultrasound and routine bloods. My doc showed me everything as she did the ultrasound and said everything looked good! Then the bloods came back 240 Ca125 and so they were repeated and came back over 100 marks lower! Obviously this is still higher than it should be. I asked why this would be since the ultrasound was clear..she went through it again and pointed out some dense patches and said one ovary was slightly large but both these things could just be because I'm young and fertile but is was best to go in and have a look because of the CA levels! I see that most of you seem to have been sent for MRI or CT scans rather than a laparoscopy which seems to have been able to pick up on and diagnose tumers, fibroid, cysts ect and I'm wondering why I wouldn't have these first to identify anything rather than investigative surgery..I know she said that they could just remove anything they find when they are in there..but what if its nothing and I go through all of that for no reason! I am also worried about the cost as I have no insurance. 

Maybe she saw something more and didn't want to worry me and that is the reason. I am driving myself mad trying to work it all out I'm only 33 and haven't had kids yet and I'm terrified that all of this will affect my fertility.

I just really needed to get it all out..I'm playing the whole thing down to my bf and family because I don't want to worry people for no reason but I cant help worrying myself. 

Any thoughts or similar experiences would be great to hear. 

Thanks