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Ovarian cyst and raised CA125

18 Sep 2019 16:25

Hi all,

I'm new to this chat forum but have found some comfort in reading others' experiences.

I'm 39 with two young sons who I'm the sole carer for.

I'm very much in the no man's land stage at the moment and hoping for some results and answers to come through in the next week or two.

In late July I started with abdominal discomfort following the end of my monthly period and any abdominal pain is unusual for me so I immediately took notice. After 5 days I saw my GP who referred me to a gynecologist. Two weeks later I saw the gynecologist who arranged for internal and external scans to take place the following week. The sonographer found a 5cm cyst on my right ovary.

I saw the gynecologist again the same week and he explained that the cyst was probably a hemorrhagic cyst although the sonographer thought there was a chance it could be a dermoid so blood tests were arranged and taken the same day and another scan for 10 weeks time arranged as the consultant felt the cyst would likely be gone.

Unfortunately the gynecologist has then gone away without sending me my results so when I chased them 3 weeks later they were sent to my GP who told me my CA125 results were raised at 380.

Another consultant has since looked at my notes and has referred me for an urgent CT scan which takes place this Sunday.

I've found my mind wandering to worst case scenarios quite a bit although I am very open to the fact that this could all be a storm in a teacup in a few weeks so trying not to worry unnecessarily. Keeping my fingers crossed but as I know I already have a cyst, no apparent endemetrosis etc and raised CA125 I am concerned.

Ovarian cyst and raised CA125

18 Sep 2019 22:25 in response to Delilah1989


So sorry you are going through this, i can fully relate to your fears.

Firstly i’ll start by saying (and you can look this up) CA125 is only 50% accurate, either way.  Ive had that very conversation on Thursday with my GP.  That being said CA125 is all they have at the moment so if raised needs investigation and its good you are getting that.

I too am the sole carer of my 5year old and i too have 2 5cm Dermoid cysts, one on each ovary.  Mine have been on watch and wait until removal, which im now on waiting list for.  My CA125 was not elevated, but i took no comfort in that as even my GP says it can be raised in people who dont have ovarian cancer and can be low in people who do.

Follow through with all your investigations and try to keep positive.  I know its not easy, especially when you have dependants.


Ovarian cyst and raised CA125

19 Sep 2019 09:55 in response to lisa12

Hi Lisa,

Thank you for your response. It's good to hear from someone else who is experiencing a similar journey and we can relate to.

How long have you been experiencing symptoms or waiting to be seen?

I hope that you're not kept waiting for too long and that all is well with your results when you get them.

What you've said about the CA125 is reassuring. My GP did say that nothing is 100% accurate and that it can give false positive readings.

When my consultant returns from his annual leave at the end of the month I'll feel happier when I can hopefully get some answers.

I have close family but not having a partner or father for my boys does mean that something like this does brings all those 'what ifs' to the forefront of your mind. We all experience it in our own circumstances I guess. If nothing else it'll remind to me to get my affairs in order Laugh

Wishing you well.


Ovarian cyst and raised CA125

19 Sep 2019 18:38 in response to Delilah1989

I know. Ive had a major “what if” today regarding my little boy.

In 2015 i went to the Dr with not much else other than bloating. I has an ultrasound were they thought they say bowel inflammation. I then had an mri which showed the bowel as being ok (which i now doubt) and the Dermoids were found.  So ive been monitored yearly by CA125 & ulstrasound.  Until the past year ive had no problems but now have left sided pain which among other symptoms is worsening. At my latest Ultrasound to monitor based on pain we decided to get removed. But my symptoms were additional that didnt all fit dermoid. More bowel related. So i done an FIT test private which has came back positive with 10ug blood. So im off now to see a consultant for bowel. Im wonderimg all along was the imflammation first saw always my bowel and not the dermoid.

So like yourself all the additional worries that go with these uncertain times 

Lisa x

Ovarian cyst and raised CA125

19 Sep 2019 19:41 in response to lisa12

Bless you lovely, living with the uncertainty all this time Sad

Whilst my general abdominal pain subsided I was left with what I can only describe as what felt like inflamed intestines and bloating. Generally tender I'veto the touch all over my abdomen for weeks. I've also developed an intolerance to lactose which gave me really painful cramping. All internal pain is now gone but I do still feel bloated and like I've got a weight in my abdomen pulling down. Strange!

I hope that as your symptoms are worsening, they move you up the list and get your surgery booked soon so you can move forward and know what you're facing x