Ca125 levels raised

[RJB212121]

Hi everyone . I,m Currently In the process of investigation for suspected Endometriosis. I had some blood tests done and my Ca125 level came back high 😩. I had an emergency scan everything came back as normal 🙏🏼. But obviously you can’t always see endometriosis on ultra sound . I have all the symptoms currently taking the pill Iv been on for a 3 weeks not helping at all so far . In fact I think I feel worse as Iv had a few bleeds . Just wondering if anyone else has ever had raised ca125 levels and then been diagnosed with endometriosis? I feel terrible atm . Constant nausea /bloating /pain . Iv been referred so just waiting for a appointment date . X

[Natalia88]

Hi there,Hope you are well.

I did have CA levels raised- around 80 and yes I do have stage 3 endo.

[RJB212121 in reply to Natalia88]

Hya thank you for replying 😊. Hope you’re not into much pain atm . Oh so did you have a normal ultra sound result aswell? Was your endometriosis diagnosis by laparoscopy? Did you wait long for referral ? X

[Natalia88 in reply to RJB212121]

This Monday will be 2 week after I had my laparoscopy.I did start my journey with NHS but because of some misunderstanding I went private to see consultant. Then he told my to request to be refered to one of the hospitals where he works. Altogether it took 6 months, so not too bad.

On ultrasounds they found cyst and nothing else. So my endo was confirmed and removed on the first laparoscopy.

[RJB212121 in reply to Natalia88]

Ahh That’s good 6 months in all compared to some of the waiting times Iv read . I’m glad you haven’t had to wait to long and had a diagnosis. How are you feeling now ? Hope you feel better soon thanks for the information 😊xx

[butterfliez]

Hi I had very high CA125 levels before I was diagnosed with endometriosis, they’d found a large cyst & then checked my bloods that’s when they checked the levels, I’d had 3 repeated blood tests for it during the wait for laparoscopic surgery & the levels gradually decreased, I think it can raise during certain times of our cycles too ,

I was very worried at first but try not to stress yourself with reading about ca125 levels online ( that’s what I did ) it can be raised for many reasons including endometriosis & not always reliable , hope you feel better soon & get some answers when referred x

[RJB212121 in reply to butterfliez]

Hya . Thanks for the reply 😊. Oh I know I was straight on google 😩😅 worrying then untill I had the scan . To be fair I had an appointment a week after high level results. I was feeling better after the ultra scan came back normal as In not the C word . But obviously still In pain and feeling terrible so wondering why . 🤞🏼For a quick referral appointment it’s looking like the next step for me is a laparoscopy. Hope you feel ok with everything that’s going on . thanks for the help 😊xx

[Fionac1981]

Hi.

Yes I've had raised ca125 levels when taking blood. I had scans too, and results came back normal.

I carried on, but my symptoms got worse, and cutting a long story short, was diagnosed with stage 4 endo.

Keep pushing them. Hopefully they will get you sorted. Good luck.

[SS10]

Hi, I had this earlier this year. Mine were high and after and ultrasound my doctor referred me and I had stage 4 endo.

I had never had any major symptoms so had no idea. However now, things that did hurt and affected me, no longer do. I had my lap earlier this year and have now recovered.

I would push for an mri as that’s how they found mine, the ultrasound showed a cyst only and I was lucky to have the same radiographer treating me who scanned me 4 years ago for something else.

If I didn’t have, then I doubt another would have organised my doctor to have the CA125 bloods done.

[Peenie123 in reply to SS10]

How did you push for an MRI please….this is my situation now- scheduled for ultrasound this next week ….TIA xx

[SS10 in reply to Peenie123]

Hi Peenie, I was fortunate to have private healthcare with my husbands work, however my doctor recommended I have one after my bloods and ultrasound results. Our local authority advised they wouldn’t be able see me in their normal 2 week turnaround and said if I could go privately then I should try. 🤞🏼🤞🏼🤞🏼

[vizzle_01]

Just out of interest do you always have raised ca125 levels with endometriosis? Can you have normal ca125 levels with endo? Mine was 17 ku/L so within the range of 0-35. The gonadotrophin level was borderline but the doctor said it was fine. My ultrasound also came back fine but they couldn't see much because I couldn't empty my bladder completely.

[RJB212121 in reply to vizzle_01]

Hya , no I don’t think you always have raised levels with it . Iv had Endo symptoms for years I’m sure Iv had this blood test a couple of times it’s never been raised before . But this is the worse Iv ever felt so I dno if that’s why it’s raised . Have you been diagnosed? X

[vizzle_01 in reply to RJB212121]

No I haven't been but undergoing investigation for it. I've got a telephone gynaecologist appointment in September so I'll see what that brings. Oh and a telephone appointment with a urogynecologist in Feb 2022 because of a referral the sonographer made after my ultrasound last month.

[Emma-Hold]

My gyne told me that a raised ca125 level is common with endometriosis. I have been diagnosed with endo and my level was high but I don’t have the c word!

[Leiasky45]

Hi I had raised c125 it was 99 which I thought was high but have heard of people with results in the hundreds and it not been cancer, mine did indicate endometriosis which is on lots of my organs and I had a 8cm cyst removed. Try not to worry x

[JenBella]

I had raised CA125 before my surgery. Have to say though, initially when they told me the reading was high I was ill with worry!! I got my bloods done several days later and they level had gone down. After my surgery I was told it was due to the cyst squirting blood out 🙈 you should also never have CA125 levels tested when you have your period. Any type of bleeding can affect it. Please don't worry, it's very very common with endo xx

[JenBella]

Can I also ask what pill you're on? They put me on mini pill to take Continually but it didn't suit me. I bled Continually and I felt really depressed etc. Came of that and now take combined pill for 3 months straight with 1 week break....what a difference it makes!!x

[RJB212121 in reply to JenBella]

Hya , thank you for replying 😊. Hope you’re feeling ok ? Mercilon I’m taking , it’s been 3 weeks Iv had two bleeds with the usual pain that comes with a period . So it’s doing the complete opposite of what We take it for 😩. Doctor said to give it another month as it could take a bit longer to regulate. Im not sure I can last another month on it I feel worse . X

[Endohope18]

I also had ca125 levels at 85. It’s just an inflammation marker and can be raised due to a number of things. there would be a concern if the other cancer markers were raised along with it. I was diagnosed with a large cyst and a few deposits of endo.

[fytdkd]

Raised CA125 levels are a measurement of a certain protein antibody, which appears with inflammation. A raised CA125 basically says 'something isn't great and your body is reacting to it' - this is often endometriosis, but could also be an ovarian cyst, and yes, sometimes cancer. But in the case of cancer, CA125 numbers can go REALLY high - like into the 1000s - so don't worry unless your GP is worried. While I was waiting for my laparoscopy to remove a large endometrioma that was super visible on a normal ultrasound, my CA125 hovered around the 100 mark.

[Bluesea7]

CA125 test is to check for cancer, fibroids and endometriosis , mine did not show up on ultrasound, my cat scan they though I had massive fibroids, MRI Scan showed the endometriosis . I've had hysterectomy and ovaries removed 3 years ago.

[Ladyh81]

Hi there sorry to hear you’re suffering.

Yes I had raised CA125 bloods when mine was being investigated. I really panicked at the time but I was then diagnosed with endo following a laparoscopy

[RJB212121 in reply to Ladyh81]

Hya thank you 😊. Did you have a normal ultra sound after the raised ca125 ? Was that when you was referred then for a laparoscopy? How long did it all take ? X

[Ladyh81 in reply to RJB212121]

They found growths on my ovaries on the ultrasound scan (which turned out to be endo) so they then did the blood tests where I had raised CA125. The consultant told me that endometriosis plus lots of other things can cause raised CA125.

They then sent me for an MRI followed by the laparoscopy.

the only way to diagnose endo properly though is by a laparoscopy.

Hope this helps xx

[Pinkgreen]

Hi,

I always had period issues since they started and told I had pcos or endometriosis but nothing was really investigated and given pills which is not always the best option! An mri scan in my 20s for something else showed cysts on my ovary which triggered further investigation but no op was offered and told cysts can reduce between periods. Some months later I was feeling very unwell for about 10 days with v bad pains in ovaries area, fever sickness and weak. I was sent to hospital and after ongoing tests a ca125 showed over 800+. But I was told its and inflammation marker and although the tests is for tumour markers, for endometriosis it's unlikely to be cancerous. For cancer the readings would be in the 1000s, so it was a comfort being told this as I remember never feeling so unwell at the time and in so much pain and stress. It turned out I had an ruptured endometrioma that was twisting and causing the pains and ill health. Since over time I've had lapropscopy treatments both laser and removals which have helped with my quality of life. I have stage 4 endo but thankfully limited pain during period time and improved periods too. Worth getting good advice and looking at all your options. I've found losing weight, having a endo diet, cutting down carbs, caffeine, try peppermint tea! As little things can bring such relief for an endo sufferer I've found. I don't take any contraceptive pills anymore (so glad i stopped) and odd painkiller if I need to during my period now. This site has been a great help as have many others too and hope you find peace in coping with endo. Try not to worry or stress and research as much as possible before any treatments.X

[RJB212121 in reply to Pinkgreen]

Hya , Thanks for the info 😊. Yes certain foods definitely make me feel worse . Gluten is the devil for me . Glad you’ve had the help you needed x

[Boogie16]

Hi! I had raised levels which prompted a scan. A growth was found on my right ovary so the hospital arranged a laparoscopy and they found endometriosis at stage 4 x

[JS1001]

Hi!

I was just wondering if you had any updates on your raised ca125?. I have had raised levels for months, they are staying around 50 but I have had clear ultrasound scans. It’s giving me so much worry. I’m 26 and my gynaecologist suggested it could be endo but is hesitant to do laparoscopy as I don’t have many symptoms and my scans don’t indicate it. I am seeing many people who had ca125 raised by endometriosis usually have endometriomas or cysts found on their scans but I have had nothing yet to explain the levels.

I hope you are doing ok xx

[RJB212121 in reply to JS1001]

Hya , really sorry for the delay in responding. Yes I had a laparoscopy and I have severe endometriosis 😫so that’s why I had a raised ca125 . Any sort of gynaecology issues could raise it they told me . Have you had an MRI ? Hope you’re feeling ok x

[JS1001 in reply to RJB212121]

Hi, thanks for the reply! Im glad you managed to get to the bottom of everything! I have had two ultrasounds and a pelvic CT but I haven’t been offered an MRI. Nothing has shown on any of my scans other than a very small fibroid so I have just been put on the pill for now to control my painful periods despite my ca125 remaining elevated albeit stable. Can I ask what kind of symptoms you have with your endo? I do have very painful periods but it’s only the first day so I never thought endometriosis could be the cause. I also sometimes get this dull dragging pain in my lower left abdomen.

[JS1001 in reply to JS1001]

Hi I just want to update incase anyone is following/worrying like I was. I recently had my lap and was diagnosed with stage 2/3 endo.