Raised CA125 with abdominal pain and bloating, awaiting ultrasound results

[DaisyMay0]

I'm 28 and I'm feeling really worried about my health at the moment, so I'm hoping to hear from anyone who's experienced something similar.

Since February I've been getting recurring stomach/abdominal pain, usually once or twice a month. The episodes can be really severe and have woken me from sleep. The pain feels almost like contraction pains that don't go away and can last anywhere from around 12 hours to as long as 48 hours.

I'm also bloated most days, and over the same period I've developed joint pain and stiffness.

More recently I've been experiencing tightness in my chest almost every day and often feeling out of breath. I've wondered whether the bloating/pressure could be contributing to this, but obviously I'm not sure.

My periods have also changed. I now tend to have around 3 days of spotting before my period, then nothing, followed by quite heavy bleeding.

I've had a pretty extensive set of blood tests. Thyroid, arthritis/inflammatory markers, diabetes, liver and kidney tests have apparently all been fine. I was told my vitamin D and iron are low.

However, my CA125 has come back raised. I haven't actually been told the number yet, just that it is raised. My GP has said they want to check for a tumour, which has obviously scared me given the combination of the bloating, abdominal pain and changes to my periods.

I've now been booked for two ultrasound scans on Monday to check my ovaries/pelvis. They have been arranged very quickly, which has made me even more anxious.

I don't have symptoms that I would associate with endometriosis and it hasn't been suggested as a likely explanation.

I'm a mum to two beautiful boys and, honestly, I feel horrendous at the moment. I'm trying not to Google myself into a complete panic while I wait for Monday, but the uncertainty is really difficult.

Has anyone else had recurrent abdominal pain + frequent bloating + a raised CA125, particularly at a younger age? What did your ultrasound show / what was the eventual cause?

I'm obviously not asking anyone to diagnose me, I'm just really looking for experiences from people who have been through the same sort of investigation and hopefully some reassurance that a raised CA125 doesn't necessarily mean cancer.

I have had many such scans over the years. Usually for right abdominal pain, intermittent bleeding, once for raised CA125 - all been clear. Did have fibroids diagnosed once but they weren't large enough to do anything about. Even having the scan triggers my right hand side pain but as it's been there for over 30 years I am no longer concerned about it. Try not to panic but as I am the world's worst for that I know how difficult it is. Once, in my forties I had a hysteroscopy which uncovered what were termed "old" patches of endometriosis which nothing else had ever picked up. There can be a multitude of explanations not all terrible. Good luck.

Thinking of you OP. There is nothing anyone can say to reassure you fully but wanted you to know I am thinking of you

I had raised CA125 with bloating, although no pain, which the doctors were quite surprised about. I was 28. I had a massive ovarian cyst. This was removed along with the ovary and tube on that side and I've been fine ever since, including several naturally conceived pregnancies. This was over 25 years ago.

Hi Op I’ve had this and though not as young as you, under 50.
I have a cyst on my ovary and my womb lining appeared thickened so ended up having a hysteroscopy. All fine.
The cyst is being monitored but rest assured the CA125 can be raised for a number of reasons, including being on your period

I have recently gone through something very similar, though I’m older (late 40s). I had been run down for a while and blood tests showed a high CA125 and abnormal FIT result. I was waiting for ultrasounds but then had a couple of days of intermittent abdominal pain that felt like contractions, and ended up in A&E. The CT scan showed that I had a bowel obstruction in the upper bowel, and I had surgery the next day to remove it. I’m now waiting for biopsy results as they found a couple of other growths/ cysts on the scan as well.

I didn’t have any of the breathlessness that you describe, but did have some bloating. Afterwards I realised I’d been having the abdominal pain for a few months, but it had been less intense and I’d dismissed it as indigestion or feeling bloated and needing a bowel movement. It’s only when it got worse that I realised something else could be wrong.

This is probably not very comforting as some other posts might be, but I wanted to let you know you’re not alone.

CA125 is not a reliable marker. It can be raised for any pelvic inflammation, and during menstruation.

I had the same at a similar age to you, I had a 5CM cyst on my ovary, had a re scan 6 weeks later and it had burst. I planned my funeral in my head and all sorts! Now when I get those pains, not often at all I think ‘must be a cyst again’.

your feeling of breath could be your iron, I’ve just been on 3 months of iron tablets and I had some horrible symptoms with that.

sending you love x

This. I've had raised CA125 for years. All tests clear. Gynaecologist says it's a useful test for people who are being treated for ovarian cancer but not for diagnosis. She said anything abdominal can cause it to go up, IBS, periods, constipation etc.

I had raised CA125 last year and the doctor scared the life out of me much to the gynaecologist annoyance as she said it can be raised for many other things. As it was I have a very small cyst on my ovary and after ultrasound and MRI everything was ok. The ca125 was rechecked a few months later and it had dropped a little but still over the cut off point. Also at this time I had a positive FIT test after a few weeks of bleeding from my bottom, a colonoscopy showed hemharroids. I hope you have good results xxx