Have you had a CA-125 or OVA1/ROM test after being diagnosed with fibroids and ovarian cysts?

[CarolinaGull]

Hello all,

Have you had a CA-125 or OVA1/ROM test after being diagnosed with fibroids and ovarian cysts? If so, were the tests accurate?

Did you have elevated numbers, which led to having surgery or did you re-test before surgery?

If you had surgery, what kind of procedure(s) dis you have and what was your experience?

Thank you in advance! 💜🙏🏻

[Moon_maiden]

I’ve recently had a CA test, but only because they are trying to rule out other things. Levels seemed fine, I do have fibroids and endo, lap was Feb.

I’ve no idea of accuracy. I was interested to see if elevated.

[45Bumbleb]

Hi. I had an ultrasound which revealed ovarian cysts and multiple fibroids . This procedure was done as my periods were extremely heavy with unbearable pain . My CA125 blood test was carried out as a result of my ultrasound which came out at as a marker of 200 (should be 30) , I was then classed as an urgent case and seen by a gynaecologist within two weeks.

As far as I know, the test is accurate , it is usually done to rule things out , a high marker Result can be fibroids, cancer or endometriosis .

A hysteroscopy was also done and that revealed a polyp

After a review, I agreed with my gynaecologist to have a full total abdominal hysterectomy. I am 45 and had already tried for many years to have children

The main concern were the cysts as their size and lack of clarity meant they really needed to come out and biopsies to be taken

In a twist of fate, once in surgery , they discovered endometriosis level 4 over my bladder, Bowel, appendix, omentum, vaginal walk, Fallopian tubes .

The smaller cyst had burst (since my ultrasound)

All adhesions were removed and my hysterectomy went ahead

Albeit endo has been mentioned, it wasn’t the Main reason for my surgery but thankfully , the discovery of those Cysts did me a huge favour as endo can’t be seen on an ultrasound and the speed at which I was seen, I didn’t have an MRI.(from my scan to operation , the process was only a couple of months )

It explains why I was in so much pain with my periods and blood clotting , but I didn’t have other awful symptoms like other ladies on here

I consider myself extremely lucky

I now feel great even though surgery and recovery is tough

I would have lots of questions ready for your doctor and gynaecologist. A full hysterectomy might not be the option for you pending on age and fertility . (It also comes with a surgically induced menopause !). Your blood test result will probably actually help you get sorted quicker ! A raised result will accelerate the process but don’t worry about it !

It can be just down to the fibroids and cysts

Good luck, sounds like your are on the right road to be seen

X

[BoilerMissle]

I had a CA 125 blood test. My result was 1826!! That, and a large mass seen on an MRI, obviously raised a lot of red flags, which led to open abdominal surgery. Please don’t panic if your result is elevated. There are many reasons why premenopausal women would have elevated results. My reason turned out to be endo - an endometrioma that was larger than a grapefruit engulfed one ovary (which they removed) and there was another large endometrioma on my other ovary (they were able to remove it and save that ovary.)

[CarolinaGull in reply to BoilerMissle]

Thank you so much for your message. 💜🙏🏻 I'm happy you received the care you needed when you needed it and appreciate your support and kind words.

[L2213]

I also had a ca125 test when I ended up in hospital with a burst endometrioma . It was raised I think around 1400 and I was put on a 2 week referral to see a gynaecologist to rule out cancer but when I saw him he wasn’t concerned and said it was due to the inflammation from the ruptured cyst. It had gone right down to around 90 when I was retested. I later had a laparoscopy to remove the cyst and stage 4 endometriosis. As others have mentioned ca125 can be raised for other reasons and any inflammation can cause this so try not to worry too much, I hope you are doing ok and get some answers soon xxx

[CarolinaGull in reply to L2213]

Thank you so much for your message. 💜🙏🏻These numbers can be confusing. The doctors take them way more seriously, even though they're not true screening tests.

How long after your initial CA125 test were you retested by your GYN?

I'll have to self advocate and ask to have my CA125 test re-done, now that I do not have a UTI, inflammation, etc.

Did you have an additional ultrasound, MRI or CT scan, etc. after the laparoscopy?

[L2213]

I was retested about 2 weeks later and it had come down, the gynaecologist said ca125 can be raised if there’s any inflammation. I did have an mri but that was before my laparoscopy xx