Raised CA125

[Someone1987]

Bit of background: I am 29 years old, have PCOS and managed to conceive my son 10 months ago following fertility treatment. I used to only get periods yearly but since my son I have had more regular periods (strangely) though they have now disappeared again. I do not want any more children due to severe PND and the journey I've had.

Since having my son I have had pelvic pain on and off, sometimes stabbing pain on either side, but mostly a burning sensation across my pelvic are.
One period was stabbing pains instead of stomach cramps.

I ignored it for 7 months as I did not want hospital treatment due to a traumatic birth but finally went. I had blood tests and one of them, CA125 (can be raised due to ovarian tumors), was raised. Normal is 0-35, mine was 53. I had an urgent ultrasound scan which showed bulky ovaries but no tumour. Now I am awaiting another blood test to see if I need further investigations.

Has anyone else had a raised CA125? I have PND and on antidepressants and the physical pain and mental anguish is pushing me to the edge.

Thank you for any replies.

It’s good that it’s being investigated. Ca125 can be raised for other reasons, not just tumours, and yours isn’t very raised at all. It can be where you are in your cycle or for any inflammation, fibroids etc.. so try not fear the worst. Another blood test is good but if the worry is getting too much request a CT scan as this will be more detailed than an ultrasound. It’s positive that no tumour was visible. Ovarian cysts are very common but malignant cysts are very rare in premenopausal women so try to remember that and don’t let your mind run away until you have more information.

Endometriosis can cause ca125 levels to become raised too. Your CA125 is not all that high really. The symptoms in your second paragraph could possibly indicate endometriosis and this is not readily detected on ultrasound scans. Infant any pain that is cyclical in nature and or gets worse up to and including menses should be checked further to see if endo is present.

I have. I had an MRI and there was no sign of a tumour. I suspect I have endometriosis which is linked to raised CA125.

Thank you all so much for your replies💐.

@Ballsto2020 thank you, I will try not to. Too much time on my hands to overthink as well isn't helping. Good idea about the CT scan.

@AttilaTheMeerkat that's interesting it's raised for endometriosis. I'll research that, thank you. Do you have it?

@Sorka did your GP request the MRI? Did they ever diagnose you with endometriosis?

Thank you all so much for replying x

Waiting for tests and results is the worst bit. It’s good that your gp is being thorough but if the stress is getting too much then do tell them, they might be able to give you something to help with that. My GP gave me a low dose of diazepam, I only took it for a couple of days but it helped take the edge off so I could calm down while waiting for results. I don’t know if it’s compatible with antidepressants but they might be able to help you. Good luck

@Someone 1987 I have an ovarian cyst that I have been seeing a gynaecologist about. My GP referred me to the gynaecologist. I had an ultrasound for the cyst, then blood tests, then the MRI after the blood test results.

I've had raised CA125 twice now - both times I was ultrasounded and no suspicious growths - but I do have adenomyosis, which can cause levels to be elevated.

I was diagnosed with endometriosis in the late 90s.

I had a raised CA125 of about 135. It was an endometrial cyst

A friend who works in a relevant area talked me down when I first got the result, because a couple of hundred is strongly indicative of endometriosis. Over a thousand is considerably more concerning and yes tests do cone back that high.

Fingers crossed for you. It's a worrying time and I hope you have good support in RL

I had a CA125 of over 100 due to an endometrioma on my ovary - a 6 cm cyst.

My ovaries were later removed and apart from being totally fucked by endometriosis, they were OK - i.e. no cancer.

Thank you all so much for replying.

@Ballsto2020 I didn't think of that, that's a good idea. I am on Sertaline 150mg and perinatal MH team gave me some diazepam shortly after my son was born, but I was too scared to take it and they took it back. I do need to control my anxiety. Thank you for your kindness.

@Sorka are they removing your cyst? I hope it gets sorted for you soon 💐

@Vinosaurus I've not heard of that condition. How high were your levels if you don't mind me asking?

@AttilaTheMeerkat thanks for sharing, what symptoms do you have? You don't have to answer.

@RoseAndRose thank you for sharing. I didn't realise it could go into the thousands. I hope your cyst was sorted ok.
Thank you, I do. I'm under the perinatal mental health team (until son is one in two months) and having weekly therapy for a variety of issues, so have spoken to them. Sometimes it does feel like one thing after another...sorry for the moan.

@Pelleas thank you for sharing. It sounds as though you have been through a lot with it.

Thank you all so much. I am just taking each day and trying to fight the urge to get myself into a MH state again.

I hope you get the support you need. Ca125 can go into the high thousands so yours really is very low and no sign of a tumour is good news.

The most recent test (about 2 months ago) was 49 so not massively high.

Adenomyosis is not well known. It's similar to endo insofar as it's the endometrium growing in places it shouldn't - in this case, specifically the muscular wall of the uterus. It can be asymptomatic (as mine was for years) or cause huge amounts of pain and bleeding (and everything in between), and it can cause elevated CA125 results.

Did they scan your uterus? Was there any comment about it being bulky or heterogeneous?

I'm sorry to hear about what you're going through. I recently discovered that I have a cyst on my left ovary. It's benign but one of my tumour market levels is slightly raised and therefore borderline but they suspect the tissue on the cyst is endometriosis and that's what's caused the raised levels in my CA125 test. My level is 46, end from reading this thread that's actually low so I guess I shouldn't be freaking out too much!

My pains are worse just after ovulation and before af.

It's 6cm and due to the pain I get, that I'm ttc and almost 40, they wanted to fast track me through so they've referred to it as suspected cancer. The gp explained that sometimes they have to use trigger words to fast track things. That doesn't stop me being petrified and I'm attending hospital on Tuesday as a new Gynaecology Oncology outpatient.

I'm really hoping they just remove the damn thing so I can get on with ttc and a life with no pain.

Can't really offer any advice, just to show some solidarity and empathy. It's also nice to read other people's stories x

@Tamalama most cysts are benign so try not to worry too much, it’s good you’re being fast tracked, the sooner it’s out the better and you can get in with life. That isn’t too big at all so surgery won’t be too bad and your recovery will be quick. You’re in the best hands, don’t be scared, they have to be thorough and cover all bases.

@Ballsto2020 thank you.

@Vinosaurus thanks for sharing. Can that be picked up via ultrasound?
I had an ultrasound and she said my ovaries were bulky, my right tubeless side was typical PCOS and double the size it should be and my left had lots of follicles. She said my womb lining was fine.
I am very confused, my body is doing its own thing...I already have PCOS and now I'm getting periods again, but all this pain. Currently have awful lower backache and the ongoing burning sensation.
How did they treat your condition?

@Tamalama hi, thank you for sharing your experience. I'm sorry you are having pain and raised ca125 with your cyst. I hope they sort it soon for you. My GP suggested it could be a cyst so I was shocked when I had the scan and I have the pcos cysts but I'm assuming nothing classed as too big. I hate now knowing what's wrong. I get pain around the similar time as you, I have began to wonder about endometriosis but didn't know it could just appear and wouldn't it be seen on a scan. I'm worried they've missed something on mine. I may be paranoid but they did miss my ectopic pregnancy and I lost my tube.
Sending you my thoughts for Tuesday xx

Pelvic pain which was cyclical
Painful periods that painkillers did not touch the side of
Brown stringey clots
Red clots
Heavy bleeding
Pain down legs
Rectal pain known on MN as javelin arse

@Someone1987 Thank you. I’m having surgery this week. I’m worried that I’m going to lose my ovary (or worse) but it has to be done.

For me the cyst causes a constant dull ache. For the last few weeks it has been a constant pain as a second cyst has appeared next to the first. Discomfort caused by ovarian cysts isn’t always cyclical. My GP didn’t initially believe I had a cyst causing me issues as he (and the nurses) were all adamant that you should feel different at different stages of your cycle.

I hope you get answers soon

I had a massive cyst/tumour, it weighed over 10kg and I didn’t experience any pain until it got very big, a few weeks before surgery. My experience was very rare and different to yours but I had it removed just over 3 weeks ago. @Sorka I know it seems lots to take in but even if they do need to remove your ovary it shouldn’t affect your hormones too much. I don’t know if you have/want children but I know lots of people who have gone on to conceive naturally with only one ovary.

Thinking of you @Sorka 💐

Hi, hope you are all ok. I thought I'd update. I have had another ca125 and it is still raised, so being referred to a gynecologist. Not sure how long it'll take, given covid. Xx

Yes due to endometriosis

@Mydogatemypurse how high were your levels if you don't mind me asking? Thank you

I cant remember exactly but I remember freaking out I'd been in pain and had symptoms for a while. When the test came back fir the ca125 they sent me for an ovary scan that night which was scary. Ovaries were fine, I was then booked in for a laparoscopy and told that i should be reassured as my levels were under 100 and I should panic if it was in the hundreds. (Multiple) Sorry that's all I can remember. Oh I also had a very small cyst on one ovary which is apparently a large cause of raised levels. Xx
I have endometriosis now and I made some lifestyle changes. It's better than before. I also find magnesium supplements help. X

@Mydogatemypurse thank you for sharing your story with me. Ah that's interesting. My scan was ok, aside from PCOS which I've always had, but ca125 was 53 and a month later it's 52. So awaiting an appointment for gynecologist. Xx