Endometriosis UK

Raised ca125 and cyst

Hi I had a hysterectomy and part of my bladder removed in 2012 because I had raised ca125 and a lump the size of a golf ball showing in my womb,anyway they put it down to endeometriosis altjough I had no symptoms for this,anyway I went back to the octors last October as my belly look like I am 4 months pregnant I have pain in right side so eventually on 27th dec I had mri which has shown a cyst but doctor took blood tests and has come back raised ca125 and I have to see the doctor tues,any idea what they will do x

1 Reply

Having a raised CA125 and a cyst are symptoms of endo.

But if you didn't have any pains or obstructions to bladder and bowel activity from the cyst and it wasn't a big cyst they are more likely to leave it alone and monitor it

hoping it will burst or reduce on its own - whichmost them do,.

As you now have bloating and the cyst is probably big enough now to qulify for surgery

(usually 3.5cm and bigger) then they will probably look to giving you a laparoscopy to drain or remove that cyst (which doesn't mean you won't grow another one - just gives relief for a while). They will also check and map the locations of endo and hopefully removed some or all of it.

The raised CA125 is always going to be raised if you have endo, there is no point having any more CA125 blood tests as they will always stay elevated once they have gone up and you are diagnosed with endo. Not everyon with endo has a raised CA125, but if you are a lady that does hve there CA125 pushed up by endo, then it islikely to remain elevated even after a surgery.

my Ca125 washigh, and i had 2 cysts (one for each ovary).

the smaller of th two was the angry one, and my bloat was so swollen by belly button ws pushed 2 inches to one side.

It was actually the 1st sign that i noticed something was up- before my cyst burst and refilled. or several weeks i had complained to my mum that my belly button was heading over to one side. Neither of us realised what that meant at the time.

anyhow after surgery to remove cysts, endo, one ovary and tube etc

my bellybutton is back where it is meant to be, bloating from the op eased off and life got a lot more comfy after the cysts were out. But it was not an instant fix.

It took a long recovery from the op, 4 months to be op pain free, and also took 17 months for my bladder to start working again for itself after the trauma of the op.

Most ladies get their bladders working a lot quicker I hasten to add.

So next step will be to discuss having the angry cyst removed and have the endo seen to.

It will be quite soon, as a raised CA125 puts you on the fast track to surgery, even though in all likely hood it is simply raised due to endo, they don't take chances when you have not yet been diagnosed because of the teeny tiny risk of OC. It would be highly unlikely statistically that it is OC- so don't even bother considering that side of things. It's bad enough to have to contemplate a battle with endo.

Very Best of Luck with the op. And a quick recovery afterwards too.


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