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Hello! Could endometriosis cause a Ca125 level of 96?

Hi Everyone, I have being having elevated CA-125 levels since last Sep 64, 39(Nov) and 96(March) but nothing has shown up on ultra sound. My gynae feels that it's Endomtriosis and she put me on Dectapepyl injections for 6 months!!! My twin suffers from bad endo too but her CA-125 isn't elevated!!! Could it be the early stages of ovarian cancer and therefore it didn't show up in the scan?

9 Replies

Hi lovely,

Ultrasound very rarely shows OC the best is a CT/PET/MRI scan to show anything that it may be xxx


Do you have any other symptoms? Xxx


Hi, the gp took routine bloods but also included the diff Tumor markers. I was lacking in energy for a few months and had lumpy breasts. It was only when the Ca125 came back at 64 and the rush to have an ultrasound the following morning that I thought about the possibility ovarian cancer. When I read up on the signs I had most of them, but I put it down to endometriosis. Painful and frequent bowels, urgency to wee, pelvic and lower tummy pain and tiredness. The gynae put me on 3 monthly injections for 6 months to put me into a false menopause to calm down the endo. I felt good for about 2 months and then my hip started to hurt and now it's really sore and my lower back hurts and I have a dull pain in my right side but not constant. My bowel has become more active and I am rarely hungry and feel full veryquickly when I eat. I am bloated too but I have gained weight from injection. I am worried that it could be the start of cancer but not visible on scan yet!


I would push for a proper scan. CT or Pet scan will do the trick. And hopefully not show anything 🤞🏻


I had really bad endometriosis and ended up with ovarian cancer. I suggest you ask for a scan to make sure that there is nothing going on. At least investigate this further. I know the other ladies have given you the same advice. Be you own advocate. X

1 like

Yes it can among other things that can cause it to rise any irritation inflamation cyst ect can make it rise


I am in the same situation but without the suggestion of endometriosis - rising CA125 and clear ultrasound.

I have a sore back (since February) frequent trips to the loo, bloated tum (since June) and more recently being sick after eating (last 3 weeks) as if I'm too full or the food gets stuck; I've decided to strongly request a CT or PET scan and am going to see the GP next week, if they say no then I'm going to ask for a private referral. I would advise that you do the same.

The GP wants to wait 8 weeks and retest my blood, but after being shocked at the last rise and hearing the words tumour marker, I went home, had a think without feeling pressured by sitting in his office, phoned the ovacome helpline for advice and then (in my mind!) took control by phoning the GP to arrange another appointment to ask for what I want to happen.

Please, do the same. We have to be our own advocates.


While yes Endom could cause an elevated level, you certainly need to know for sure. What caused the Dr. to run the CA125 anyway- are you having other signs. Ask to have the CA125 rerun before putting you on any drugs, if the number rises again, insist on a scan.

To many of us have had gone through wasted time of what the dr" thinks" it might be and only to find out that it was not what they "thought"... Be sure, it will give you and your sister a great peace of mind.


Hi Everyone, thanks for all the advice. The gp took routine bloods sep 2016 due to me feeling a bit run down and the Ca125 was the only one to come back abnormal. Once I heard the word ovarian cancer Tumor markers I researched it and felt like I had all of the signs apart from the clear ultrsound.bloated, constant feeling of needing to poo and urgency with pee!! Low in energy most if the time but I am working long hours too! Now I have hip pain and lower back pain! And a dull pain in my lower side coming and going! I am 45 and I have 3 kids! With a history of moderate endometriosis but no laporascopy for the past 12 years. The gynae said that she can feel it in the pouch of Douglas and she feels that it's def the endo! But without a doing a lap how can she be sure? She put me on dectapepyl in May and I am 4 months into the treatment and my bloods haven't been checked since March 1st and the Ca125 was 96!


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