Grateful for any advice

Hi All

I see that people who have not been diagnosed ask questions here so I hope you don't mind me doing the same.

17 years ago I had a 10cm benign 'chocolate' cyst removed from left ovary (along with ovary and falopian tube). I was diagnosed with a 'functional' cyst on right ovary 13 years ago and was told it would 'come and go' but nothing to worry about.

I have had lower abdominal pain, pain in the top of my leg and bleeding between periods for the last 6 months. Recent ultrasound revealed slightly enlarged ovary and cyst of 2.5cm. I did not think to ask if the cyst was solid but was told that it looked like 'it had bled into itself' and that may be cause of pain. I was also told there did not seem to be any signs of endometriosis or fibroids.

Sent for CA125 test which has come back slightly raised and doctor has said I will have appointment to see consultant in 2-3 weeks ago. That was a week ago and no appointment through as yet.

I am not overly worried, but would really appreciate some advice regarding other reasons for raised CA125 and whether I should be pushing to see a consultant sooner.

Many thanks

Gillx

6 Replies

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  • Hi Gill,

    Sorry to read of your problems. Of course, you really need to ask your doctor these questions, but I would not expect your symptoms to necessarily be associated with ov.ca. ca125 can elevate as a result of menstrual bleeding, and as you are bleeding between periods, it might simply be that. Other inflammatory conditions can raise it too.

    If you have an appointment in 2 weeks, I'm sure that will be ok.

    Very best wishes,

    Isadora

  • H i Gill

    Try not to worry too much- I'm sure your appointment will come through and they will take your concerns seriously. Hold on in there!

    With love

    Anne

  • As you are worried, if you have heard nothing at the end of 2 weeks I would follow the matter up at the hospital. I say this because there was an administrative blip where I was treated which led to a delay in my treatment and had I not rung to follow up I could have waited even longer (although my case was more urgent- I was waiting for a needle biopsy.) I do hope that all goes well for you.

    Very best wishes,

    Carrie

  • Hi Gill. I want to backup the suggestion that you ring the hospital about the appointment. Thirteen years ago I was refered to a consultant to start chemo but the admin forgot to send the appointment. Luckily we rang and found out about it in time. Recently I have rung about appointments and have given the date/time at least a week before the letter arrived. Sometimes the admin does get overwhelmed and informing patients about appointments takes time.

    Whether or not the symptoms are connected to oc you do need to know when the consultation will take place so that is one uncertainity out of the way. You are bound to be worried but fingers crossed that it will be soemthing 'simple'.

    all the best

    Angela

  • Thank you everyone for your replies and advice. I agree and do feel that if my GP thought it was urgent I would have been referred earlier, but I will call the hospital to see if I can find out appointment date ahead of letter. It will just be reassuring to know when it is even if it's not for another two weeks!

    Once again thank you all so much.

    Best wishes to you all

    Gill x

  • Hi all

    Just an update with fairly good news! I was on the fast track appointment list after all and saw a consultant yesterday. General consensus was that the cyst is endometrial (as was previous cyst many years ago).

    I'm still on fast track list to have cyst removed and biopsy within next 4 weeks due to CA125 of 106 although I am not worried by this as endometrial cysts can cause CA125 to raise.

    Many thanks again for all your advice. I do wish all of you the very best in your journeys.

    Will update after op and results.

    Best wishes

    Gill xx

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