Help : So ii got my blood results back. And... - Endometriosis UK

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Littleone88 profile image
17 Replies

So ii got my blood results back. And the ca125 results come back at 55.. I have now had the drs give me an urgent referral to gyno to have a cat scan on my overies and be checked over etc.

Can’t help freaking out they think it’s more sinister than they first thought.

Ii had two ladies at my pelvic internal scan tell me they think ii have endo cyst inside my right Overy.

Is this normal routine to then have a cat scan or mri scan?

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Littleone88 profile image
Littleone88
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17 Replies
JoBTW74 profile image
JoBTW74

Hi this is totally normal as the ultra sound doesn’t pick everything up. The further scans will show exactly what’s going on and then they can advise you of your next steps x

Littleone88 profile image
Littleone88 in reply to JoBTW74

Thank you 😊 trying to keep calm but my mind is wondering away with horrible thoughts. Xx

Rubyred55 profile image
Rubyred55

Hi, try not to worry too much, the scans will tell the consultant what they need to know. My consultant told me not to panic too much about the blood test results as I have a cysts too and the ca125 could be raised due to this. I had an urgent ref too. Finger crossed you scan is soon.

Littleone88 profile image
Littleone88 in reply to Rubyred55

What did ur ca125 results come back as??

Was they much higher?

Thank you for replying x

Manfe85 profile image
Manfe85 in reply to Littleone88

My CA125 came back at 255, and CA19 at 176, it was due to inflammation from DIE, I did have 5 Large endometriomas also which would have raised it, it's now staying steady at 59 on my last blood test since the endometriomas were removed. x

Littleone88 profile image
Littleone88 in reply to Manfe85

I’m not sure what DIE is??

God 5 endometriomas bet they caused a lot of pain. Did you have to wait long for them to be removed ? Thanks for your reply xx

Manfe85 profile image
Manfe85 in reply to Littleone88

Sorry, it's stage 4 Deep Infiltrating Endometriosis, they did cause a lot of problems, the largest was 24cm, the endo is in my bowel and bladder which is the biggest problem. From the endometriomas being discovered I was in for surgery within 6 days as it was first thought to be an ovarian tumour. I was diagnosed with cervical cancer in December so they thought it had spread and been missed. Thankfully they were benign, only minor clear cell changes but we're confined so safe. I'm due in for a full hysterectomy in August after I've healed from my last surgery 4 weeks ago, then a bowel and bladder resection and hopefully I can start to rebuild some sort of life! I hope you get some answers soon, the frustration and waiting I think is the hardest x

Littleone88 profile image
Littleone88 in reply to Manfe85

Omg ii can’t even begin to imagine what you have been through how scary for you!!

Sounds like you have been through some really hard times. I’m so glad ur nearly out the other side and can start living again.

Ii can’t believe how bad this can get to think 4 weeks ago ii didn’t know any of what ii know now.

Waiting is definitely the worst part, and googling doesn’t help what so ever!

Iv thought every scenario in my head and it’s only been two days. Pray ii receive a letter with app very soon.

Thank you so much for sharing your journey. Ii wish u all the best xx

Rubyred55 profile image
Rubyred55

To be honest, I don’t know the number as the nurse would not discuss it and I already had a MRI and consultant appt booked. I just knew they were high.

Cazywazy profile image
Cazywazy

Hi Please don’t worry mine also came back at 105 the first ca125 and the raised to 120 this was due to the cyst. The consultant told me if it was anything to worry about it would of raised much higher.

Take care x

Littleone88 profile image
Littleone88 in reply to Cazywazy

Really? That’s such a relief. My dr at the surgery was pretty blunt and rubbish and just said u need an urgent referral to make sure it isn’t overian cancer ASAP. But then wasn’t like don’t worry could be a number of things. So him saying that has completely thrown me and done nothing but make me worry xx

Cazywazy profile image
Cazywazy in reply to Littleone88

I had the same response from GP but mind was put to rest as soon as I had seen consultant 2 weeks later, so please don’t worry x

Littleone88 profile image
Littleone88 in reply to Cazywazy

Thank you so much you have no idea how much weight that’s took of my shoulders xx

kitscat profile image
kitscat

Endometriomas can raise your CA125 so please don’t worry. It is very unlikely to be ovarian cancer xx

Littleone88 profile image
Littleone88 in reply to kitscat

Thank you. The waiting game is the worst fingers crossed I’m seen quick so ii can relax again xx

L2213 profile image
L2213

Hey hope you are doing ok. As others have said above endometriosis can raise your ca125 anyway. When I was in hospital for a ruptured endometrioma my ca125 was over 1000 I had a referral to oncology a few weeks later but the consultant wasn’t concerned, had my ca125 retested and it went down to 89 all was ok. Hope you find out what’s going on soon, good luck xxx

Littleone88 profile image
Littleone88 in reply to L2213

Hey I’m doing ok having good and bad moments. Thank you. Hope your ok too.

Oh wow that’s very high.

Thank you for sharing you girls have definitely reassured me so much. Hopefully the wait isn’t to much longer that’s the worst part. Thank god for this site. Xx

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