I was getting heavy periods, due to my age I should have been going through menapause but it was being delayed. I had CA125 tests and it came in between 55-85 I had a CT scan, an Endoscopy, Ultra sound and also a biopsy all clear. It was suggested at one point due to the irregular readings a hysterectomy may help stem the bleeding. Luckily i had a good consultant and she got some input from other colleagues, they suggested they kept an eye on my blood tests every three months. Another CA125 test was done and it came back normal. No idea why, i had commenced taking folic acid tablets, iron tablets and multi vitamins and ate more healthily losing a stone in weight, four weeks before I got my last tests. Could this have been the reason my CA125 went back to normal.

Hi, I thought I'd update my post in case people search this thread in the future and need some reassurring.

So I'm aged 37 and had noted changes in my period flow with more pain so I  went to my gp and got sent for a blood test and ultrasound. 

my CA125 was 85 and ultrasound showed no masses but some mild thickening. So I got sent for a hysteroscopy (took 9 weeks to wait for an "urgent appointment"!). Whilst it wasnt pleasant the hysteroscopy really wasnt that bad. Id kinda say that for me, it was a bit worse than a smear but I have had two kids. The results showed something that "didn't look like cancer" but gynaecologist wasn't sure what it was but obviously wanted to rule out cancer so took biopsies and repeated the blood CA125. Got my results today on chasing the secretary at 3 weeks following the appointment  and was told ALL CLEAR! Not cancer and CA125 now 11. Got to wait another few months to hear what it is but for now it's a big relief! 

Hope this is helpful for someone. Take care. 

I can really relate to this post. I’m been suffering flair ups every few months with indigestion/ constipation which turned into diarreah at end of flair up. These flair ups would last a day but the last flair up was 4 days, was bed bound, had the usual sickness constipation then diarreah and tiredness and a tight pain in middle tummy which then went around to my right. Since the flair ups I had a pain on right side of navel gojnv up to right rib and it’s still here. Dr did my CA125 it was 45, I went through a hard couple of weeks waiting for the ultrasound and low and behold they came back completely clear. Got the test done again and it went to 41 so they’ve stopped investigating the ovary and my gynocoligist is pleased and doesn’t need to see me. I’m still wondering my my ca125 would be raised. I’m getting investigated for my chest/ bowel now so I’m going for colonoscopy and endoscopy in 2 weeks. Hopefully I’ll get some answers - I’m still getting bad pains on my right side eso around navel and goes round my side to my back and under my rib and up to armpit. It’s sharp and intermittent or there’s periods where it’s worse but I get type of dull pains there too. I’m just wondering could the CA125 be linked to inflammation in bowel as I read somewhere that it’s not only gynocoligical region of body. They also suspected gallstones but ultrasound was clear for that too.

Dec 20th 2019

I can relate to your symptoms. I've  had pain in my right side for 3 years with intermittent symptoms. I was diagnosed with Ibs then possibly bowel problems. I hard a colonoscopy 3 years ago. It was clear but with some diviticulitis. As I was still having issues: a lump on the right side  with pain radiating up to my right rib and round my back  I had avpelvic ultra sound a ct scan and a vaginal ultra sound. Nothing found and my C125 was 35. Since the I've had all the procedures done again. Still nothing but the C125 was now 40. 

This week my doctor thought my diviticulitusvhad flared up as the pains had reappeared in the same places. I wanted another C125 blood test done. It is now 45. The doctor is now sending me to see a genealogists and get yet another scan done. 

Like you I'm now concerned and can't understand why previous scans haven't found anything if the C125 test is raised and suggests ovarian cancer.

Have an appointment on 6th Jan. 

Hi just wondering how you got on? I'm in the same situation at the moment, 3 month wait to see the gynaecologist 

raised CA125 but clear ultrasound 

thank you xx

 Hi, I really do appreciate how frustrating and worrying the wait for these results are and its concerning that the raise in CA125 can be alarming. 

I was diagnosed with Ovarian cancer, had a tumour the size of a canteloupe melon apparently. My symptoms weren't extreme and I didn't really take the notice of them that I should.... Needing to wee often and not being able to wait, unrinary infections, loss of appetite, bloating, dull ache in my lower abdomen. That is what eventually pushed me to the doctor, I wasn't in pain though.

My CA125 was 772 and the tumour was attached to one of my ovaries only nothing else. I had the tumour removed, also a hysterectomy. I've posted about this before but want to let you know it was about 9 weeks from the doctors visit to surgery. I was told that the cancer was slow growing

I have a 3 monthly check ups to make sure it's gone for good which consist of an internal and a blood test. All which have been clear (CA125 is now 9) 

I'm a fit -ish and heathly, working 61 year old and life is pretty good. Keep positive girls and know whatever happens you will cope with it and hopefully come out the other side stronger than before, be proud of yourselves you are amazing x

Hi had ca125 test  last week saw doctor today sending me for scan and appointment  with gym I asked what was normal he said around between 40/50 he said mine was in the hundreds had parched hysterectomy  years ago but left my ovaries am a bit worried  any help would be appreciated 

Hi there

I have very similar symptoms for the last 5 months and nobody can find the exact cause for the pain:( they can not refer me for any tests at the moment due to the Covid-19 outbreak:( I was wondering how you were managing your condition while waiting for the tests results and whether you were diagnosed with anything. Hope you are doing better now.

Hello Cheiis,

I have just joined as ca125 has been tested. Feeling bloated, very full, never ending sluggishness and pain in the upper quadrant right side below the ribs as well as constipation.

I do have a condition known as Adenomyosis where the uterus absorbs the blood during periods. This causes inflammation hence painful. Got a mirena coil insitu for over 9 months which brought alongwith it severe side effects. Had it removed 2 months ago but the side effects are still lingering on.

After reading your post I am wondering how you have gone along with the findings and treatment?

Hopefully, well.

It would be reassuring and helpful if you continue to share you experience.