Hi GemLou42,

I can really relate. I am 31 and I have had really bad bloating, pressure and needing to pee very often. It was suggested IBS and  I've had blood works with the CA125 coming back as high at 95 (normal range is 0-35) I was told I would be reffered for scans, I googled everything thinking I had OC. I was supposed to hava an urgent scan within two weeks which is today but hadn't heard anything so called the hospital myself yesterday telling them how anxious I was. I was offered an ultrasound yesterday afternoon and a CT today. After that scan I have been told I have a thick lining and a large cyst on my left ovary which could twist and would become a medical emergency so if I feel sick or have a fever to go straight to A&E.  I have been reffered to a gynacologist and will go back today for CT. I asked if it looked like Cancer and was told no and that the gynacologist will took me through next best steps which I am assuming is surgery as it is so large. 
 

I wouldn't worry too much because nurse told me although mine was 95 it isn't that high and it's likely due to inflammation because of the cyst. Think positive and don't worry yourself unnecessarily. I was making myseld sick with worry. If you don't hear anything call the hospital and try and move things forward. I was told because I needed both scans I wouldn't have been able to be seen until November because of delays due to Covid-19 so I opted to go on two seperate days and this is a large hospital in East London. 
 

Anyone sorry to write such a long post but it is easy for us to convince ourselves it is much worst that what it actually is. Lots of positive thoughts and wellwishes x  

Hi JamieCK

Thank you for your reply. The only symptoms I have really had were the needing to pee more. I have had gut problems in the past and was told it could be ibs. But no one has ever confirmed this. It's no hard not to Google things and I have obviously been worrying myself sick thinking I have got ovarian cancer. I am glad you have managed to have your scan and at least know some of the problem. I wasn't sure if they would be telling me anything at the scan or whether you then have to wait for the doctor to get in touch with you about results. I am having my scan this Sunday so I am just keeping my fingers crossed and hoping for the best. 

Love and best wishes to you too ️. Xx

Hi GemLou42,

I remembered you had your scan today. Hope all went well and you have a bit more clairty with what is going on. 
 

all the best x

Hi JamieCK.

Thanks for thinking of me. I had my scans. Although they didn't tell me very much, she did say she couldn't see anything sinister so am happy with that for now. She had trouble seeing my right ovary but said that was a good thing as if there was anything there it would have shown up more. 

I guess I will await the results from my doctor and see where we go from there. I don't know if they will do another CA 125 test and see where the numbers are at.

Hope your doing okay

Thanks again for reaching out. Xx

Hi Gemlou

This is the first time I've posted anything on here, just wondered if you heard anything back yet? Hope your results were nothing too serious. I've recently been to GP with tummy troubles, I thought (and still do) think it's perhaps allergy/intolerance related. They did lots of tests including ca125 which I was unaware of, and it came back raised. Got my ultrasound today.

Sarah

Hi Sarah. I had my scan 2 weeks ago and they found a 14mm fibroid at the front of uterus. They didn't get a clear view of my right ovary so I have been referred for an MRI just to get it checked out properly. My doctor has said she doesn't think there is anything to worry about. My CA 125 came back just above normal range at 39 and my only symptoms were needing to go the loo a lot more. I think my problems are more in my gut than my pelvic area. I really hope your ultrasound goes okay today.

Please let me know how you get on. 

Best wishes

Gemma

Hi Sarah. I had my scan 2 weeks ago and they found a 14mm fibroid at the front of uterus. They didn't get a clear view of my right ovary so I have been referred for an MRI just to get it checked out properly. My doctor has said she doesn't think there is anything to worry about. My CA 125 came back just above normal range at 39 and my only symptoms were needing to go the loo a lot more. I think my problems are more in my gut than my pelvic area. I really hope your ultrasound goes okay today.

Please let me know how you get on. 

Best wishes

Gemma

Oh that sounds like good news. Let me know how you get on with your MRI. Did you have a vaginal ultrasound? Mine were only a little raised too (46) so my sensible head says I'll be absolutely fine but it's still a worry isn't it?! I've got bloating, gas, change in bowel habits (loose, not constipation), and lower back pain but I think that's due to me lifting my heavy 11 month old! I just want it over with now, it's hanging over me a bit! X

Hi. I have just had a call from the doctor to say there not gonna do the MRI as they don't think I need it. They said as my ovary couldn't be seen it means it's small and that's a good thing. Also I m 43 and pre menapausal women can have raised CA 125 as well so they think it might just be that and the fibroid raising it. I had an ultrasound and a vaginal scan as well. It wasn't painful at all. I think the waiting around is the worst part. You just think the worst. I was googling everything and you just shouldn't as it can scare you to death. I really hope you get good results

Keep in touch

Gemma 

Hi! My scan was all clear, so I'm not really sure what happens now. I've obviously got tummy symptoms and thought it was gut related, then I got that test result so they sent me for this scan. There's no cysts or fibroids or anything to explain the elevated level, although I know it can be raised due to menstruation etc but I kind of want to know that all is okay and wonder if they'll repeat the test to make sure it's not going up. Not sure if they'll look into my tummy issues, I actually wondered if I have colitis as I have symptoms for it. I'll wait and see if the GP gets in touch x

Hi. I am glad to hear your scan was clear. It def can be raised due to menstruation. Hopefully your doctor will be in touch to let you know what to do now. If not I would def go back to the doctor and tell them your still suffering. I have to have a repeat CA 125 test in a month and if it's still 39 or less that will be it for me and the doctor said I won't need nothing else doing  but if it has gone up I will need more tests. I would def go back of your if your problems continue. You will just worry otherwise. 

I really hope you get some answers soon. 

Keep in touch. 

Gemma

Thanks! Glad you're all good too. It was such a relief to know all is well, the ca125 results can't half mess with your head! I knew that it would be fine but I think you find your mind wandering to the 'what if...?' X

They totally do mess with your head. Its horrible. I have had a month of constant worrying from finding out my CA 125 was raised then waiting for scans to getting the results. You just automatically think the worst. I am glad both our scans came back okay. I just hope you get to the bottom of your issues. Maybe you will have another CA 125 as well to see if it has gone up or down in a month or so. 

Best wishes

Xx

Hi Gem

Did you have your CA125 repeated? I had mine done and it's still elevated. My first result was 46, my most recent was 43, so it's come down slightly. I'm still really struggling with my tummy and don't really feel as though my GP is being very thorough at the moment! I'm being fobbed off with IBS and I just feel there's a bit more to it. I don't suspect anything sinister but I've not had any explanation for my CA125 being raised as yet and it would be nice to have a bit of reassurance. I've got some medication to try and help my tummy symptoms and they're calling back in three weeks x

Hi. I did have my test repeated and my levels had gone down to 33. There not as low as I would like but the they are within the normal range now so the doctor is just leaving it for now. Hopefully you will get some answers soon. Are the doctors repeating your ca 125 test in 3 weeks when you go back. I would def get them to check it again at some point just for reassurance. I think the not knowing is the worst. 

Let me know how you get on

Gemma

Oh that's definitely good news, make sure you go back and see them if your symptoms persist. Did you have any cysts or fibroids or anything to explain your levels? I don't have anything like that and I wasn't ovulating or on my period at the time of my tests so it does niggle me a bit but with my tummy being the way that it is, I'm sure there's some sort of benign inflammation in my gut but the GP is treating it as IBS initially. If my symptoms don't improve with the medication (which hopefully they will) then she'll refer me in 3 weeks.

She did say that my CA125 levels were in the back of her mind and that she wants to monitor things. I saw her a while ago just to get a breast lump checked, I have lumpy boobs and just needed a second opinion on it. She asked me again about that and if it's still there and I told her it is but it's not changed or anything and I'm not concerned. It's a bit achy so I've started evening primrose and she said if that doesn't help with the breast ache then she will refer me for that but I just feel like they're going off in the wrong direction with this. I could really do to see a gastro specialist, I know my boob is fine and as it's a little tender itll just be lumpy tissue or a cyst. She said CA125 can pick up other cancers and I tried telling her I'm not concerned about my boob and that this is all in my gut but they don't seem to listen. 
Hopefully the mebeverine will work but I've never had an IBS flare up like this, or for this long, and feel it's much more likely to be an allergy or intolerance or something but I can't pinpoint what it is. So frustrating x

Hello everyone, just wondered if anyone has had any horrible news with their ca125? Mine came back as 42, and 24 hours later I was fast tracked for an abdominal, pelvic and vaginal ultrasound. My head, and emotions has been a roller coaster, thinking the worst. But from what I am reading online, 42 can be nothing. The sonogropher told me not to be surprised if the do for sends me for further tests... that just adds to the worry 'has she seen something?' 

Doctor is ringing me this week with the results.