Hi, anyone have raised ca-125 levels?
Mine is 75 ( normal is 0-35). I have an ovarian cyst measuring 3cm. My gynaecologist said the raised levels would be consistent with endo. My cyst looks like possible endo ( blood filled and cut glass appearance).
Anyone else have raised levels?
I’ve not been diagnosed with endometriosis yet but it’s looking likely.
I have a 6cm fibroid too! ( unrelated)
I have a pressure pain down below which I normally only get on 1st day of period when I’m bleeding heavily but I have had this pressure feeling from a few days before my period and still now ( day 7). Guess the pressure could be the fibroid though as it’s quite big ( 6cm). Feels like something pushing down.
Hi! My sister was really worried when her CA125 test came back as being a high result - similar score to yours. They were querying all sorts of things including a cyst.. when she had her operation, it was clearly just endometriosis and the cyst was no where to be found so yes it can just be something such as endo that raises that particular test. Its more of a marker test than a definitive diagnosis test 
Hope that helps to put your mind at rest lovely.
Did the gynae suggest a plan going forward such as a laparoscopy?
Xx
Hi Poppymum
I have had raised CA-125 levels, around 300. I was referred to urgent gyno care and they confirmed that i have numerous cysts (endo) on my ovaries and also quite few fibroids.
I have been offered hormonal therapy and surgery to remove cysts and fibroids. My largest cyst is around 6-7cm!!! It bulges through my belly, bit scary.
Have you been offered treatment?
Sending you lots of healing thoughts!
Not personally had a raised ca125 but I’ve read a few posts in the past about it and all of them have had several replies saying it’s just to do with the endometriosis. It’s something about the growths being misread by your body as a tumour. When I explain endometriosis to other people I tell them it grows like cancer but it’s just a non cancerous cell that’s growing. Hope this helps to reassure you, and I wish you all the best with your journey.
Hi. First time posting on here. I had a CA -125 level of 37, so had to go for a scan and everything was ok, as they couldn't see any thing, then had to have another blood test to check and my results had gone up to 87, then I was referred to a gynaecologist and they said endometriosis. So had a lapscopy in January which confirmed mild endometriosis. Hope this helps. All the best.
Thanks everyone I feel calmer now!
So, I’m 38 and have a 12 year old boy but haven’t managed to conceive since him and have two adopted girls. We always thought it was just male factor infertility as we knew we had male factor plus my periods are regular, I ovulate regularly etc. We went to a fertility clinic and a scan showed a 6cm fibroid ( which needs to be removed) and also a 3cm cyst which looks like an Endometriomas. I saw a private gynaecologist who is scanning me again in 5 weeks to check cyst has/hasn’t gone. But now with the ca125 it looks like it’s likely endo. We’ve been married 16 years and ttc the whole time ( no contraception ever) and possibly I’ve had endo and not known! Waiting to see nhs gynaecologist but I think the wait for op will be up to a year. Thankfully we have our son and two adopted girls!
How old are you and do you hv any children?
I completely relate to this as it’s pretty similar to what happened with myself. Abdominal pain and anaemia - lots of scans and continued raised CA125 levels. I was referred to an oncology gynae who thought my ovaries along with suspicious looking cysts may have been ovarian cancer and advised best course was go in and have them and tubes removed. As I was 48 at the time and content with my family I agreed. Thankfully it was not ovarian cancer!..but endometriomas (cysts full of Endo) and Endo everywhere else. I was told by the consultant that active Endo can caused raised CA125 levels. Strange because thinking back over the years I've had lots of gynae/infertility issues but it took until age 48 to get diagnosed.! I hope this helps and may put your mind at rest. All the best. Bee
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