Not really sure what's going on??? - Endometriosis UK

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Not really sure what's going on???

Buddysmum124 profile image

I'm having loads of tests at the moment and endometriosis adeynmosis and ovarian cancer all in the loop my ca125 was at 90 is this checked as standard? I've seen a consultant who doesn't think it's sinister I just wondered what everyone else's journeys were like to diagnosis?

26 Replies

Hi, when I had my cyst discovered from an ultrasound I had a ca125 blood test done after it was found although mine was an endometiroma that I’ve now had removed. I didn’t get my results from the ca125 blood test so I’m assuming this was fine but the consultant said she thought mine was due to endometriosis so I think it’ll be just a standard check. I have read that the bloods for ca125 can come back high if you have endo but not 100% as I’m not a doctor 🙂 xx

Hi. My journey started like yours. CA125 was elevated to 418, scans showed ovarian masses so had MRI. After MRI they were content it was endo and adenomyosis. Been waiting a year now for surgery which is finally booked this month! My advice is to try not to panic but I know I did when I got CA125 results. I’m sure if you search on the forum for CA125 there will be other posts with high results - it’s an indicator for cancer but also raised for endo but sends the fear when your levels are raised. I do believe it is checked as standard when ovarian cysts are found. X

Thanks so much, yeah I've been to hell and back in complete terror still waiting for results just had a private funded mri I'm praying to anyone and anything it's not sinister consultant seemed to think it wasn't google is horrific!!!

Google really is a scary doctor! I totally understand your fear as I was the exact same. With private mri you should get results really quickly and put your mind at ease. I have my fingers crossed for you.

Thanks so much means a lot xxx

Ps best of luck with your op too xxx

I too scared myself silly over CA125 results and got fast tracked into cancer investigations, being told I was having an MRI scan for ‘cancer staging’ at one point even .... but in my case, twice, it was ‘just’ benign ovarian masses (Large benign teratoma tumour one time and large endometriomas second time) and endometriosis causing the havoc. (I did however need to lose both my ovaries in separate surgeries because the growths had twisted and engulfed them) Not worrying is easier said than done, but apparently any pelvic inflammation can cause the CA125 to be raised... even the GP who called me with my result and a shaking voice didn’t seem have been aware of this oddly and managed to scare me silly. The waiting on tests and results feels like torture if you’re not careful ... looking back now, I made myself really unwell with worry almost more than the presenting problem. I’ve learnt from that time to just cross each bridge as I come to it... I recently had ‘urgent cancer referral‘ once again for another symptom (which also turned out to be ok) and my mindset was so much healthier this time around! All the best x

Thanks so much for coming back to me nice to have people who understand what I'm going through x hope you are keeping well x

Hi , try not to worry my c125 was 99 I had a cyst on my ovary and when I had my laparoscopy they took it away and it wasn’t cancerous. I have got endometriosis on my bowels and bladder so I will have another operation to get it removed. But all my symptoms are so much better after my op and now I know what’s going on in there .xx

It's just so scary isn't it!! Hope you are keeping well now thanks for replying too me x

Hi Buddysmum124, I went through a very similar process starting about three and a half months ago. It all started with slightly raised CA125 results and then an ultrasound, then a CAT scan. They said after the ultrasound they thought it might be cancer. So everything happened very fast. Only a week to two weeks between each scan. After the CAT scan I was called in for a consultation and referred to the Gynaecology cancer specialist. She said they found a large cyst 12cm x 11cm x 9cm and there were some other worrying things. So the next week I was booked in for an urgent laparoscopy. She wanted to do it in a few days time. I was given the option of a full hysterectomy or just removal of the left ovary and tube the cyst was attached to. They seemed pretty sure it was sinister... I was very scared as i’m Sure you can empathise with. That time seemed to go on forever! But all the NHS staff were amazing! I had the laparoscopy and they took biopsies etc and removed the ovary tube and cyst and had to do a repair on my ureter which the cyst was also attached to. I had to wait 2 weeks for the results. But very luckily they came back as negative for cancer, but positive for Endometriosis. It was an endometrioma cyst. They found Endo tissue in other areas too. It was such a rollercoaster of emotions, in hindsight now it really made me appreciate the family and friends who supported me through it all. Because it was high risk of cancer I didn’t tell many people as I didn’t want to worry people without need. But I can say now that it made me look at my life and realise what is important and let go of what isn’t. I wouldn’t wish that experience on anyone. But I did get a lot from it too. The CA125 was just raised because of the Endo, so please try not to worry too much about that. But I do understand very much how you feel. I’m happy to chat anytime. Big hugs J xx

mrskiki profile image
mrskiki in reply to R2D2-

I can take myself back to those moments now, it doesn't seem real sometimes looking back. Certainly changed my outlook. I too Kept it quiet. X

R2D2- profile image
R2D2- in reply to mrskiki

Yes, I know exactly what you mean! It seems like a years ago sometimes even though it was only a couple of months. It’s really made me appreciate everything more. My body, my health everything... I keep a daily gratitude diary. I started on the first January 2019, and this really helped me through the tough times. No matter what you are going through there is always things to be grateful for sometimes you just have to look for them... X

mrskiki profile image
mrskiki in reply to R2D2-

Yes, I look up at the sun or stars now and think wow! I'm happy to just be in the garden. It also helps me to put up with the endo knowing what the alternative was... Love the idea of the gratitude diary!

Buddysmum124 profile image
Buddysmum124 in reply to R2D2-

Thanks so much lovely to hear from someone who understands I've been to hell and back with all this waiting!! I know what you mean I've evaluated everything it's all very sobering!! Hope you are keeping well and thanks again for getting in touch xxx

CA125 tests are not reliable as a cancer indicator for pre-menopausal women because any inflammation from the menstrual cycle, endo, etc can cause a raised result. Please don’t worry about cancer. Statistically you are far, far more likely to have endo than ovarian cancer if you are young.

What I will say is that a raised CA125 result helps get the journey going faster on the NHS. I had a large endometrioma that also aided in diagnosis. Two keyhole surgeries to excise endo later, I’m basically fine. Best wishes xx

Buddysmum124 profile image
Buddysmum124 in reply to wanwood

Thanks for your reply I hope you are keeping well x

Hey, don't worry! A ca125 of 90 is indicative of endo, if it was cancer it would be in the thousands, so this definitely won't be. I know it's so hard, I sat in hospital for a week last year with this panic but it will be ok. The thing with endo is no one explains anything to you very well because they just don't know enough but they will do the blood test before operating to be on the safe side. Sending lots and lots of support xxxx

Many thanks for your reply xxxx

girli1969 profile image
girli1969 in reply to Gingea16

Actually that’s not necessarily so.... cancer can have ca125 not so high, and endo can go very high....

Ah, me too, high CA was 100 -200 due to endo inflammation and various cysts. Stressful journey when you end up on the ovarian cancer check pathway but certainly gives you a different perspective once you've been through it, but years ago they would not have even checked it would have been left to chance X

Buddysmum124 profile image
Buddysmum124 in reply to mrskiki

It certainly has made me think a lot I shall just keep waiting and trying not too worry xxx

Just want to echo everyone else and reassure you that you aren't alone. Mine was raised above 100 so fast tracked through oncology, but the oncologist said it would be in the thousands for cancer, and MRI confirmed endometriosis.

I've just paid to get a mri I hope this is the case for me xxx thanks for getting in touch xxx

If you have Endometriosis Ca125 would come very high.. For me it was very high and when they did Laparoscopic surgery, they found I had Stage 4 endometriosis. So yeah.. don't worry it pretty common for this test result to be high of u have endo. Best wishes

Many thanks for getting in touch I hope you are keeping well x

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