Ca125 premenopausal

[JS135]

Hi,

I just wanted to see if anyone else has been in a similar situation and has come out ok or found any answers that weren’t sinister.

around a year ago, age 25, I went to the doctor for some changes in bowel movements and a dull ache in my lower left abdomen. The doctor ran a ca125 , I didn’t know about this at the time. It came back elevated at 54, so I was fast tracked for a pelvic ultrasound. It came back clear, no cysts nothing on ovaries. Followed by a hysteroscopy and biopsies also normal, but with removal of a small polyp.

I have been repeating the test every 3 months now for the last year, my levels have been fluctuating between 50-95. I notice that when my bloods are taken during or around my period, the levels are much higher, however they fall back to 50 during mid cycle. The dull ache in my lower abdomen comes and goes.

I have since had another ultrasound, which found a very small intramural fibroid (1.5cm). And most recently, a pelvic and abdominal CT scan which was normal.

Has anyone else had elevated levels and have nothing at all show on scans? I should add that all my bowels were checked I have had colonoscopy etc.

Have you got pcos or endometriosis ?

Endo doesnt always/ often show in some scans

Hi thanks for the reply, I think I have replied to you on other messages in the forum. I haven’t been diagnosed with either.

My sister had elevated ca-125 and it turned out to be endo.

Hi thanks for replying. I hope your sister is doing ok. Was her endo picked up on scans? My scans have been clear so far

I’d be thinking endo too. I’ve got similar symptoms minus raised bloods. Has US and waiting on Colonoscopy, bloods fine and q:fit fine.

Endo can only be diagnosed by laparoscopy so I’d ask your GP about that. I’ve already got a referral letter waiting should colonoscopy be clear.

Last diagnosis for consideration is IBS. But my GP has been great in stating she won’t diagnose that until everything else is ruled out.

Hope you get an answer soon.

My colonoscopy is clear but i still reckon i have endo
Waiting on urgent gynae referal currently

Already had ovaries etc scanned tho

Well wasnt clear in that polyps were removed from colonoscopy
But endo wasnt seen

Probably need that other L thing

Endometriosis won’t be seen on a colonoscopy unless it’s deeply infiltrated the large bowel.

I am assuming the ‘L thing’ you are speaking about is a laparoscopy. This is usually a last resort if your ca125 levels are consistently elevated/rising with ongoing symptoms. If you haven’t had a CT or MRI yet they will likely want to do that before resorting to surgery. Good you are seeing a gynaecologist, hopefully you will get answers soon.

No, she had to have a laparoscopy and they then found it everywhere. It is very hard to detect on scans.

@Picklemeyellow
Can I ask what your sisters key symptoms were, prior to the laparoscopy?

What treatment was offered?

Thanks.

She had lots of pelvic and lower back pain. She had IBS symptoms, in particular bad constipation for years and was told it was just ibs. And very painful periods. When they first examined her they found a large tumour on her ovary and suspected OC and so the laparoscopic surgery ended up 5 hours. The tumour turned out to be endo which had enveloped her ovary so the whole ovary was removed. They then removed all visible endo tissue.
None of this was picked up until she was 44, after decades of complaining about pain! I suspect that I may also have endo as I have had decades of issues too.
I am on several endo support groups and it’s terrible so many women suffer for years until their diagnosis.
Good luck with everything btw, hope you get some answers soon.

@Picklemeyellow thanks for taking the time to reply.

I'm also wondering whether I have endo which is undiagnosed, but I'm post menopausal.

Lots of pelvic and abdominal pain, which at the moment, I'm attributing to a fibroid. Also a raised c125 ( GP says fibroid is the cause ?) IBS symptoms kicked in about 4 months ago.

These gynae issues are horrendous and it's so tough to navigate yourself round the NHS to get diagnosis, treatment.

I hope your sister feels better now?

What route will you take with your symptoms?

Thanks Sortmylifeout52 I am 50 and my issues have become so much worse since peri. I had an ablation last year which has left me in awful pain. Luckily, I have a gynae appointment next week and will discuss it with him then but don’t holding up too much hope (I don’t have a lot of faith in our local gynaecologists!). I hope you manage to get your issues sorted soon, good luck.

@Picklemeyellow thanks

I'm feeling the same. 52, post menopause and been on a rollercoaster of hormonal hell these past 5 years! So sick of it now, I just want my life back!

Best of luck with your appointment. I'm waiting for " the call" too.

I am post menopause. Had very high (135) CA125 4 years ago. MRI and US showed nothing and the CA125 went down to 30.
Recently had bladder symptoms and CA125 has been consistently 60. Nothing showing on ultrasound or CT so I've been refereed "urgently" to gynae. Urgent but not 2ww. When I rang after 3 weeks they indicated it would be a long wait.

Curious to know what causes raised CA125 if it's not cancer or cysts or endo.

I was told urgent is up to 18 weeks

Will vary area to area

Ca125 can be due to pcos

Or pelvic inflammatory disease

RosemaryDill My re-referral to gynae was sent as an urgent. That was back in February and I’ve just, this week, received the appointment for beginning of September!

Hi, just an update for anyone in a similar situation. I had my diagnostic laparoscopy and stage 2/3 endometriosis was found with adhesions in surrounding uterus, bladder, bowel and peritoneum. I am still awaiting biopsies but this could take 4 weeks

Hiya,

I’m commenting because I’ve recently been on a mad rampage googling everything to do with ca125 as my levels came back slightly raised (45)

I’ve just had my ultrasound which showed a small (1.2cm) functional cyst and nothing else. I was hysterical as I’d been fast tracked and I have health anxiety anyway so I was going mad. The senior sonographer told me that ca125 in premenopausal women can be elevated from getting out the bed on the wrong side 😂 she was really reassuring. I see a gyny on the 18th but the scan showed nothing. I do have a history of cysts so I was also more worried because of that but it was fine. The sonographer also said that research is being done to find a better test for ovarian cancer because the ca125 is just not specific enough at all and very unreliable in younger women. I’m 31.