Hi I know exactly how you feel as 3 years ago just as covid broke out I was diagnosed with ovarian cancer on my left side.  My ca125 was 17 and on normal scans they found nothing although I had the pain in my right side? Eventually they did a 3d scan on me & found it. They found I had several adhesions spreading out from it & it took over 4hours to get out, by scraping them off. My biopsies came back positive & I had to have several months of chemo. The operation though was fine, I had to have a full Hysterectomy & both tubes removed.  I found the best thing to do as soon as you come round drink plenty of water & try & sit up as soon as you feel you can.  I was up & walking around the next day. And was out the following day. Take it slow & do not lift anything.  I found the operation I got over but the mental issue of having a cancer  diagnosis took the longest (2 years)to get over. Worrying with every blood test & check if it had actually gone. As covid lockdown came as I had my operation I had no support so it mentally hit me pretty bad.   If you can get support & people to talk to after do so.  I f you have chemo I would advise shaving your hair off before it begins as It is not so traumatic when it starts to go

Do you mind if I ask whether you were post menopausal? My CA125 is low and I have a cyst that needs surgical removal.

Hi

 I am 58 ,

my CA125 is low , but the more I read the results on this test are not very good..

I actually had this cyst 2 years ago but was told it was fine and I would have scans every 4 months , which never happened .

it has now changed with a solid component  and after 2 scan can’t see what it is .

when do you have it removed 

My CA125 is 13 - I Will learn more when I see the consultant in a a couple of days time

Hi, No I don't mind you asking, yes I was postmenopausal for about 4 years. I am now 60. 

We moved house & I had been busy laying turf etc in the garden, the Dr kept telling me it was sciatica as I kept getting a pain on my right side radiating round to my lower abdomen & down my leg.  The pain in my groin got so bad it was a sharp shooting pain in my groin worse than any period pain, to the point I couldn't walk until it subsided.  One day it was so bad I called my husband home to come to the Dr with me.  We insisted that something be done as it had gone on from September to December. They sent me to A&E & again we had to insist on them doing something, we were there till 9pm & they scanned me. The scan did not show anything once again, but I started emailing the Gynae consultant & eventually in the January I was sent for a 3D scan which showed it hiding between my Left ovary & fallopian tube & had started to attach itself to the wall of my bladder. My bloods CA125 were17 so they saw no cause for alarm until the 3d scan.  Do not rely on the CA125 test as they are not accurate, I knew my body and knew something was not right. They found mine in the January & removed it in the March, then I had chemo.  My advise is be a pain & keep pushing the Doctors I went to several in our practice & would not let up until they took me serious.  It is a sad fact but you have to keep pushing them to do something about it, at the end of the day the sooner you get it out the better.

We moved house & I had been busy laying turf etc in the garden, the Dr kept telling me it was sciatica as I kept getting a pain on my right side radiating round to my lower abdomen & down my leg.  The pain in my groin got so bad it was a sharp shooting pain in my groin worse than any period pain, to the point I couldn't walk until it subsided.  One day it was so bad I called my husband home to come to the Dr with me.  We insisted that something be done as it had gone on from September to December. They sent me to A&E & again we had to insist on them doing something, we were there till 9pm & they scanned me. The scan did not show anything once again, but I started emailing the Gynae consultant & eventually in the January I was sent for a 3D scan which showed it hiding between my Left ovary & fallopian tube & had started to attach itself to the wall of my bladder. My bloods CA125 were17 so they saw no cause for alarm until the 3d scan.  Do not rely on the CA125 test as they are not accurate, I knew my body and knew something was not right. They found mine in the January & removed it in the March, then I had chemo.  My advise is be a pain & keep pushing the Doctors I went to several in our practice & would not let up until they took me serious.  It is a sad fact but you have to keep pushing them to do something about it, at the end of the day the sooner you get it out the better.

I too was the one who had to advocate for my own health. They told me my groin pain  was a hernia - I knew it wasn't a hernia and the ultra scan confirmed it wasn't a hernia. I asked for a TVS and abdomen scan and they then found a multiloculated adnexal cyst. If I hadn't known to ask for this type of scan they would not have offered me one. The consultant was reassuring but, as I am postmenopausal, I will still need the cyst and tubes removed as only then can they be 100% sure as to its status. I have had a CT scan with contrast as a precursor to the surgery, and will get the full picture in a couple of days time. The NHS has been wonderful once they identified a cyst with everything  done at speed but this, when you are catastrophising, brings its own stress! 

I hope you are continuing to recover well Remi

Thank you & I will have fingers & toes crossed for when you see your consultant :) xx

I am so sorry I did not mean to cause you stress

You did not ! You have been very helpful 

Thank you for the advise