Endometrioma ovarian cyst, raised ca125 and 2 week referral

KookyLemur · 2024-12-17T21:25:48+00:00

I’m looking for some support really or anyone that’s been in a similar situation. I had some unexpected bleeding back in October which I actually think was just my period after I had come off some hormone medication. To be on the safe side, my GP referred me for an ultrasound and a transvaginal ultrasound. I had the scans which showed a small fibroid in my womb but a 2 cm x 1 cm haemorrhagic or endometrioma cyst on my right ovary. My GP phoned to tell me about this last Friday night and suggested that I had a CA125 test just to be on the safe side. I had the CA125 on Monday and tonight the GP rang to say that it was elevated at 55. She has said that I need to be referred on the two week pathway as it could be indicative of cancer. She did point out that my scan results looked like a haemorrhagic or endometrioma cyst and that it didn’t appear to have its own blood supply which she said was good news. I know that no one can give me answers and I just need to be seen by the hospital but I am completely panicking and I’m convinced that it’s going to be terrible news. Just wondering if anyone has been in a similar situation.

Original poster

KookyLemur · 17/12/2024 21:37

I should add, in case it makes a difference, I’m 48 years old, still having periods and have had 3 previous c-sections.

OP posts:

ANON20241 · 17/12/2024 21:38

I had severe endometriosis few years ago with huge chocolate cyst on one of my ovaries and pre-surgery my CA125 level was also slightly elevated.
But Drs never suspected anything else apart from Endometriosis with me, but just to say Endometriosis can cause elevated CA125. My levels went back down to normal post surgery. Hope it all goes well xx

Starryknightcloud · 17/12/2024 21:39

No advice but a hand hold - I have a BRCA2 mutation so ovarian stuff like this is often on my mind.

I'm glad they've been thorough and hope you can be seen very soon and it is indeed good news.

BCBird · 17/12/2024 21:46

Someone I know had the same thing. It turned out the level being raised was not cancer. Hand hold OP

Pegsmum · 17/12/2024 21:53

Yes I’ve been in a very similar situation to you, so I know exactly how panicked you feel.
I had a 12cm endometrioma cyst which was monitored as it grew, and part of that monitoring meant I had a CA125 test, which came back at 80. You can imagine my panic when my consultant rang me at work!
She did explain that there are other causes of a raised CA 125, inflammation being one, but as I had been delaying a hysterectomy for a while as I had stage 4 endometriosis, my consultant was quite insistent and I had the surgery. My histology results were clear, so I presume it was inflammation from endometriosis that raised the CA125.
I know it’s a really worrying time and your mind goes to all kinds of places, please keep us posted as to how you get on.

Original poster

KookyLemur · 18/12/2024 14:44

Thank you all, it’s so helpful to hear other people’s experiences. I’ve been given an appointment at the hospital for the 3rd January so hopefully I’ll know more after that.

its just so horrible waiting and my mind always goes straight to worst case. I’m just going to have to wait and see I guess but thank you for your support - it does really help.

OP posts:

Pelvicpaininthebum · 14/06/2025 09:49

KookyLemur · 18/12/2024 14:44

Thank you all, it’s so helpful to hear other people’s experiences. I’ve been given an appointment at the hospital for the 3rd January so hopefully I’ll know more after that.

its just so horrible waiting and my mind always goes straight to worst case. I’m just going to have to wait and see I guess but thank you for your support - it does really help.

@KookyLemur how are you now? I'm in a similar situation.

Original poster

KookyLemur · 14/06/2025 10:01

Hi @Pelvicpaininthebum
My GP referred me to gynaecology oncology because she was worried mine was cancerous. Within 2 days, the consultant at the hospital contacted me direct to say the cyst looked like a haemorrhagic cyst and my CA125 was only mildly raised. They said they were not worried and would rescan and redo bloods in March. They did, my cyst has unfortunately grown to 6cmx5cm and my CA125 was 52 (so slightly less that before). I met with the consultant a week later who said - nothing to worry about, she said GP's should not be allowed to run CA125 blood tests in her opinion because they are very often raised in premenopausal women. Because my cyst has grown it is less likely to go on its own but it still might. I chose to give it another 3 months and then we will rescan and redo bloods in the hope it might go on its own. She told me 80% of cysts go on their own but sometimes it can take awhile and for some of us they can grow. If mine grow more, my consultant has said she will do day case key hole surgery to remove it. Usually she would just take the cyst but since I am 48 years old and no longer plan to have anymore children - she'll take my ovary and tube too. She said standard waiting lists are approximately a year to have it removed but since I was referred under gynaecology oncology she can take it out within a couple of weeks if needed. My next scan is booked for the 27th of June so I'll make a decision once I know if its grown again. One other thing my consultant told me was that out of every 100 women with cysts referred to her (that means the cyst looks funny or your ca125 blood test is raised) only 3 would have cancer. Hope this helps a bit in terms of reassurance but happy to chat anytime.

OP posts:

Pelvicpaininthebum · 14/06/2025 11:11

KookyLemur · 14/06/2025 10:01

Hi @Pelvicpaininthebum
My GP referred me to gynaecology oncology because she was worried mine was cancerous. Within 2 days, the consultant at the hospital contacted me direct to say the cyst looked like a haemorrhagic cyst and my CA125 was only mildly raised. They said they were not worried and would rescan and redo bloods in March. They did, my cyst has unfortunately grown to 6cmx5cm and my CA125 was 52 (so slightly less that before). I met with the consultant a week later who said - nothing to worry about, she said GP's should not be allowed to run CA125 blood tests in her opinion because they are very often raised in premenopausal women. Because my cyst has grown it is less likely to go on its own but it still might. I chose to give it another 3 months and then we will rescan and redo bloods in the hope it might go on its own. She told me 80% of cysts go on their own but sometimes it can take awhile and for some of us they can grow. If mine grow more, my consultant has said she will do day case key hole surgery to remove it. Usually she would just take the cyst but since I am 48 years old and no longer plan to have anymore children - she'll take my ovary and tube too. She said standard waiting lists are approximately a year to have it removed but since I was referred under gynaecology oncology she can take it out within a couple of weeks if needed. My next scan is booked for the 27th of June so I'll make a decision once I know if its grown again. One other thing my consultant told me was that out of every 100 women with cysts referred to her (that means the cyst looks funny or your ca125 blood test is raised) only 3 would have cancer. Hope this helps a bit in terms of reassurance but happy to chat anytime.

@KookyLemur thanks for your reply. Apparently mine in definitely an endometrioma so a little different in that everything I've read says they don't go away by themselves.

Very interesting they said they can do the surgery in a couple of weeks if needed, I'm worrying I'll be left on a very long waiting list.

I'm currently waiting on the 2ww list for gynaecology.