Has anyone had persistent raised CA125

[isitmyturn]

Mine was first checked two years ago when I had UTI and was 66. Since then I've had 3 ultrasounds which showed nothing and several more ca125 tests all showed around 60.
I've had no UTI issues since and I'm post menopausal.
I have another gynae follow up next week and I think they'll probably discharge me.
Just wondering if it's unusual to have long term raised ca125

My sister had persistently raised ca-,125. Turned out to be endometriosis.

I also have endometriosis, ca-125 always normal but it can be quite normal for endo sufferers.
Have you ever been checked for it? I was only diagnosed 2 years at the age of 52, my endo gynae tells me it may never go even post menopause.

Hi mine was slightly raised to 43 in June and last week had dropped to 42. When it was 43 it triggered the two week cancer pathway and I ended up having scans in gynae on my ovaries and then a colonoscopy. Both came back fine. My doctor said it could raise for any inflammation in the body not just for cancer. Because of my other issues I’m having regular blood tests with that one included. I’ve never been tested before and I’ve had regular bloods but the doc I saw must have thought something was going on. My doctor told me his MIL had same level as me and couldn’t find anything. My friend had same issue and had every test going and couldn’t find anything dodgy. I do have fibromyalgia, 3 slipped discs and spine degeneration disease plus I’m on morphine and other meds. I have also discovered I have very high cholesterol and high blood pressure. It’s been a crazy 9 months! I’m also being brain scanned to rule out MS. This is not to do with the blood test. I was terrified when I first had the results but it can just be raised for many reasons.

Oh I’m also 52 years old. X

Oh I have a long list of other conditions, just nothing gynae.
The gynaecologist has told me this isn't a screening test, lots of things can trigger it etc. It's just the fact that it's been going on over two years and they don't seem to either investigate further or give up.
Ovarian cancer is notorious for having no symptoms in the early stages so I wouldn't want it missed. Equally I wonder why they just keep repeating the same tests

Same with me OP. I’ve been struggling the last 10 years with a couple of things. I was terrified when my bloods came back and the doctor was really blunt with me and said I might have ovarian cancer!!! Ovaries are fine and my bowels are fine. It seems it’s my heart that I need to keep eye on. Have drastically changed my diet and trying to move more. It’s hard with my back problems. I’ve inherited a lot of my issues. Even my aunty had a raised Ca125. Sometimes it’s just raised and we live with it. At least I’m hoping that’s what it will be x

@WingingItSince1973 that's interesting. Do they still keep checking the CA125?
Presumably the heart thing is unrelated? I do have SBT which is well controlled. My main issue is rheumatoid arthritis ATM. Again unrelated.
I have another telephone appointment soon, I think they will discharge me

The Doctor said last week that they will check again in a few months but this year I’ve had a full mri on my back and spine,
2 colonoscopies and 2 scans of my ovaries. The only thing wrong that they’ve found so far is my messed up back which I would have thought maybe raised the ca125 level due to inflammation. I also have fibro and osteoarthritis. I’m on the watch and see for parathyroid disease as that was flagged up years ago. I also had a brain scan 2 years ago and am having another one soon. I was getting intense migraines every morning as soon as I opened my eyes. This is a red flag for brain tumour. They couldn’t find anything. Incidentally I had my blood pressure taken a few weeks ago and for the first time ever it was sky high so the beta blockers he gave me for that have almost cured the headaches 🤣 My cholesterol level is 7.3 but my ecg was fine.

if you have rheumatoid arthritis I read that could push up the ca125 due to inflammation. Or even having a menstrual cycle the day of the blood test. Or ovarian cysts, endometriosis, etc. I have small ovarian cysts. Our bodies are so delicately balanced that one thing gets knocked out of kilter and it has a knock on affect. I have been discharged from gynae and bowel departments. My doctor is scratching his head but like he said to me his MIL had slightly raised ca125 and they couldn’t find a reason. Same with my friend and my aunt. I really deep dived researched this when my results first came back as I went into free fall panic mode and I needed to find some other reason to keep me balanced. I also take medications such as morphine, amitriptyline, sertraline and beta blockers daily. The first two are for my back. I hope you find some answers or at least given reassurance that it could be the RA raising the numbers for you. Sorry for the waffle xx