Hi Joanne, I read about your story on one of the other posts. I really feel for you, it's so hard isn't it, when you get all of these symptoms and you don't know what's causing them. Since I got my raised CA125 back, I've been really struggling to eat and I have had really bad diarreah and I've lost like half a stone since friday. I'm struggling, cause although it could be the stress of the results etc, it's playing in my mind that it could be symptoms alternatively. I do get pelvin pain, and I get like a dull pain at times and stabbing pains sometimes on each side, but then it goes. The main thing that makes me feel ill is the indigestion, acid reflux,and pains on right side of belly button (esp when I need to release bowels) and pain on my top right and chest. They initally thought it was gallstones, but upper scan showed everything was fine up there. It's just so confusing. What's the worse symptoms you seem to be getting at the moment Joanne? Have you booked to see your GP yet?

Hi,

I am in similar situation - I have CA125 levels of 370 - i have had my ultrasound and a CT scan and I am currently waiting on results.  I have a cyst on my left ovary - this was confirmed at the ultrasound.  I have had other blood tests done for Bowel and stomach tumour markers.  The waiting is the killer - its been about a month since i first got my raised CA 125 blood test back.  Its just one test after another and about 1-2 week wait inbetween each and thats with my file being red flagged.  Keeping things together day to day is difficult and I find if i am tired its harder to stay positive. It feels like your life is on hold until you know for sure......

I really feel for you Sansa. Do you mind me asking what type of sumptoms you had to lead up to this? I don't remember my dr telling me the number in my CA125, cause I was in shock and I don't rmemeber her saying. I'm worried it is really high tho, cause she's urgently referred me in a 2 week window plus she's referring to me my gynocologist. Pelvic scan booked for 8th july. I know how it feels, I have had constant dr appts lately, so many blood tests because I was showing high placelets so they wanted to keep me monitored, these placelets have come down now, however the CA125 is the main concern. I'm waiting for colonoscopy too, and MRCP for more bowel./gastro issues I've been having. They wouldn't have done a pelvic scan, but they are not because of the CA125. Did they saywhen you'd hear about the ultrasound and CT scan results at all? I hate all the waiting.

Hi,

My symptoms were feeling sick and diarrhea and just general IBS and gastric reflux.  I have a bloated tummy but thought all this was due to perimenopause as i am 48 and had hot flushes about 2 months ago. (I'm a size 10-12 but my tummy measures 38-40" as i have been keeping an eye on it)  I sometime feel a dull ache in my left hand side but not a chronic pain. When I went to the Dr originally he did the CA 125 to rule it out and he was quite shocked when it came back elevated and so was I.  I now just feel exhausted and run down but probably due to the worry, could sleep the clock round but trying to keep going at work etc.  Have only told by husband and 2 close friends at this point, so its difficult hiding the worry from my children and close family. 

Sounds very similar to my symptoms, so I can understand that you would be shocked, I was too! Tge last couple of years I've had increased discharge and pain at ovultation, but I just put that down to hormones.At the moment, I am noticing more of a general pain atound my cervix and the odd sharper pain on each side, but mainly the right. It's all very worrying,and I'm so scared of what they're going to find on the scan. I can relate too about the family, I've told a few of my close family and it's so hard. Ialso have a little daughter - aged 6 so I just can't help but worry for her, and fear the worst. The other side of me tho is trying to be positive. I worked out I was on day 5 of menstration when I took the CA125 test. I am hoping it could be due to this or something that's fixable.Did they say when you'd hear back from the ultrasound/CT? 

Hi,

Sounds like you are having a rough time with the pain and the unknown.  I am only waiting on my CT scan and they said it would be back with the consultant within a week and then they would send for me.  I had my scan last Friday. So waiting every day now....

Thankyou Beatricex, best of luck to you too. x

Sounds exactly the same as me :( I had some intense pain the other month and I was doubled up like someone had winded me. Went to the gp twice in one day with it as I knew it wasn’t right, friends said gallstones, doctor just said it’s acid reflux and gave me anti acids medication starting with m, they didn’t do anything but the pain went after a week of agony and not having any relief or tests from doctors. 

I went this afternoon. Saw a senior nurse (not keen on her she likes to patronise) and initially she said bloods and a follow up with a female doctor, then she said actually I’ll refer you to gynaecologist for a full scan etc. Then she gave me an exam and took swabs and she said she changed her mind and sticking with bloods and a follow up appt with female doctor. I have bloods being done Thursday and then an appt the following Friday. I mentioned that I’m worried it’s ovarian cancer as my aunt has just been diagnosed with it and it made me think more about my own symptoms. So she’s put in the CA125 test (thank goodness) but in the reasons for these tests she’s put ‘tiredness and worried about ovarian cancer’ so is that for my own benefit that she’s testing me or coz she thinks there’s a reason to rest? She examined my belly and it was tender all over the lower parts. She’s also testing me for thyroids, iron etc etc to see if there’s another reason for my tiredness

i think my main symptoms are the pain in my pelvic area, cramping, lower back pain, bloating and the tiredness I think they’re all equally painful and worrying me. With the bloating I’ve not been able to lose the weight with diet or exercise and it’s there constantly. Usually when I’m bloated it goes by the morning. Oh I also have very painful sex and bleeding afterward but I’ve had that for many years. Firstly for the CIN3 on the cervix then it came back a couple of years later. Smears are all fine but I’m still bleeding and cramping for a couple of days after sex :( 

Would anything affect the outcome for the CA125 results?  I’m also being tested for familial hypercholestremia which I have to fast for 12 hours for.. 

and does that test cover all cancers? 

I knew I would get that kind of reaction from the appointment.. I also knew she would ask if it was because I was pregnant. Which I know I’m not. But that seems to be everyone’s go to with me because I have five kids  

I’m not happy with what she put on the test reasons but I’m having the test and that’s the main thing really. 

I know nothing about any tests etc I’m a total newbie to all of this the jargon is confusing. If the results come back fine I’m still going to push to see a gyn because of the pain I’m in and also the pain and bleeding after sex. I need an answer for that it’s been five years this time round that I’ve been suffering with that so something isn’t right there