Hi Ellen

From what you've said  I think it's good that having a laperoscopy is better than mri or scan, mri is a picture from outside looking in, with the laperoscopy they can look and take samples if they need and see what they dealing with. My scan was only to check if anything going on, as had a few symptoms and they found the cyst, I've had the ca125 to see what levels are which are normal. My cyst may disappear, it may need to be removed, but taking one step at a time.  Talk to your loved ones, sure you would want to know if it was them.  Wish you all the best. Xx

Hi Ellen. I have similar situation. I'm 43 no kids etc. I had a mildly raised CA125 at 40 in Dec 2021 so had a transabdominal ultrasound. Confirmed there was a simple cyst c.4cm. Suggested ‘watchful waiting’ and was asked to return for a follow up ultrasound to see if it had resolved. Had follow up CA125 which still showed 40 in Jan 2022. Follow up ultrasound showed cyst had fully resolved. Had a further CA125 in Feb 2022 with exactly same level at 40. GP referred me to gynaecologist due to the ongoing (albeit stable) slightly raised CA125. Gynaecologist then suggested a transvaginal ultrasound and a 2mm fibroid was found, endometrium was pretty normal 7mm and no other issues. However CA125 came back in Apr 2022 now at 56. Gynaecologist has therefore recommended I have laparoscopy to ascertain what might be going on as he suspects might be endometriosis (I don’t have any classic endo symptoms however, but appreciate there could be silent endo/synthetic endo). Anyway with laparoscopy I know there are risks, but I too was wondering if I should instead ask for the non invasive MRI first (as I’ve read MRI can identify a little bit deeper endo than transvaginal ultrasound can do so). I’m also just concerned that I’m maybe being suggested to go into invasive surgery before all other avenues have been explored in full, or if MRI is pointless and that's why it's not been recommended. Reading NICE guidelines it tends to be US then lap and MRI only if something found on US? ‍♀️. I'm a nervous wreck as going through with surgery when the only thing I have is slightly raised CA125 (I know CA can be raised for many things too which doesn’t help me out in terms of setting mind at ease either!). Hope you get some answers too and happy to stay in contact for some help and support if you'd like too. Big hugs ️ X

Hi ladies. I was hoping for some help/ advise. Im 35 and have had 2 babies via c-section. Last c-section i also had ovarian cysts removed. I have felt a lump in my stomach recently so went to the doctor who said it felt like a pregnant uterus. Had bloods and a ultrasound and they found a 20cm fluid filled sac but they cannot tell if its attached to my ovary or not. Also my C125 level was slightly raised at 31. I have been given an urgent 2 week appointment with gynaecology for next week but im super scared. Could the levels raise for any other reason? Thank you x

Hi,

Im hoping someone has had similar experience to mine and can share their thoughts.

Im 37 years old and not yet had children and been testing persistently higher in every CA 125 test. Late 2019: 96, early 2022: 122, May 2021: 132 and Jun 2022: 259. 

My ultrasounds initially turned up clear and the gynae put it down to possible endometriosis. For the latest raised blood test, I was referred to a gynae who wanted to send me straight off for a CT scan. I expressed my concern about radiation directly on my ovaries and potential impact on fertility (my husband and I have already been having trouble). 

I asked for another ultrasound which now shows I have a rather large 6cm fibroid on my left ovary which is what's causing heavy bleeding and persistant pain.

Everything I have read online seems to say fibroids are a common cause of elevated CA125, but Im worried about the persistant raised blood tests and whether I should ask for the CT scan again.

Im so worried that I'll make the wrong decision and get a CT scan that affects my fertility for no reason (if indeed fibroids which have already been found are the cause). Or that there does ens up being something more serious going on which I will regret if i dont keep asking for tests / scans. 
 

Id really appreciate any advice or experience anyone can share that will help me make a decision. 
 

Thanks! 

Hi. Apologies i dont know much about fibroids sorry mine is an ovarian cyst which im getting removed finally next week. I would suggest to take every scan and test they suggest. Its best to be safe xx

Hi nikki how did you get on?

I had ultrasound and internall aswell and ovaries clear all good. Fibroid same size not sure what will happen now

Ca 125 was 42