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 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. 

Morning Elize! 
bless you, I remember what a worrying time this was for me. From memory, mine was 46, then it dropped to 43, then it dropped to 30 which was within the normal range. I never got an explanation which makes me a little uneasy but my scan was absolutely fine. From what I researched, it can be down to your period, ovulating, minor cysts on ovaries, endometriosis etc. I think the lower levels are generally cycle related but obvs I'm no medical professional and just going by my own experience. I still struggle a lot with tummy issues and more recently back pain. I have noticed my symptoms improved when I started the mini pill so I do wonder if I have endometriosis but once hubby has had the snip I'll see how I go as I'll be coming off the pill then. Good luck! Let us know how you get on. X

Hello, thank you for your message. 

What a nightmare this has been. The GP said they have seen fluid sacs and thinning of the skin on my c section scar tissue, which could be the cause of the rise in blood test. He seemed a little shocked that my last c section was 14 years ago, so referring me to gynecologist to see what they think. So as the GP said, nothing to worry about for now. X 

Hi I'm a bit late to these posts but if your still active on here have you had a blood tests for your hormones to determine whether you are premenstrual?

Thanks

Sam

Hi

Yes I have back pain I've always had back pain but the past month its been every day. My C125 is 39 and my symptom is spotting in between my periods and after sex. Does anyone know if the bloods could be high if its possible cervical cancer or abnormal cells at least??

Thanks

Sam

Hi.

I had a blood test earlier this year to see if I was perimenapausal. My results all came back fine. 

Thanks 

Gemma

Hi,

Mine came back normal but I've been told they but doesn't mean its not the start

I don't think doctors understand the menapause expecially premenopause 

Sam

Hi,

Mine came back normal but I've been told they but doesn't mean its not the start

I don't think doctors understand the menapause expecially premenopause 

Sam

To be fair. I have had more and more symptoms of the peri menopause as the months have gone on this year. So may go back and speak to the doctor again. 

Gemma

Hi,

Its worrying how many times us women are fobbed off by our GPs, I have a private scan booked for an ultra sound on Monday. I can't wait for the NHS  not this close to Christmas. I'm a worrier and it will be make me ill

Hopefully you will get some help

Sam

Yeah totally agree. I wish I could afford a private scan but for now just have to hang on. I am a worrier also.

Hope it goes well on monday. Let us know how you get on.

Wishing you all the best.

Gemma

I hope your ultrasound goes well on Monday. I ended up getting a 2 week referral for mine, so it lands on Monday 13th December. Results of my CA125 due back next week as I have all the classic symptoms of ovarian cancer. 
 

Gemma, when is your ultrasound booked for? 

Hi , 

I too have been going out of my mind with worry. I have a large ovarian cyst (10cm) and my Ca125 level is 65. I've been fast tracked and my appointment with gyno is 13th December. When the doctor told me I cried for a full day, but then I found this forum, it's really helped ease my mind, and it does seem that women around my age (42) usually have a raised ca125 level. I hope everything goes ok with your scan x

Hi

Thank you I'm so scared I keep crying. I am 41 and I had a large ovarian cyst 20 years ago, and had my ovary and tube removed. I have also read that CA125 can be raised as well at our age. But I will know soon if there is anything to worry about.

Thanks

Sam

Hi Sam, 

Sending best wishes. It's all a bit overwhelming so try to take it one step at a time. Focus on your next appointment and so on. 
 

laura 

Hey, had my scan and I have a small cyst, having a rescan in 5 weeks they hope the cysr will go on its own but due to my history want to make sure.

So I can now relax, she also said that doing a CA125 when I'm still having regular periods should not have been suggested because hormones can make the levels fluctuate.

Thank a everyone for your kind commnets. It does really help speaking in these groups

Sam xxx

Hi Sam, 

That's great news! Really pleased for you. I'm 42 and still have regular periods so you've put my mind at ease a little.

have a great Christmas 

laura xx

Ladies just want to say this thread has talked me off the ledge. I got a call on Tuesday this week to tell me I had elevated levels on my ca125 test (47). I'm 43 and have had a pain on my left side for the last year. Initial scans found a 13mm fibroid and I was told they usually resolve. Dr eventually ordered further tests as it didn't feel right that I should be living with this pain. Now I'm properly freaked out. It feels like the dr has told me I have ovarian cancer. He even said 'I'm sorry to have to give you this news'. I've been referred privately, appointment on Monday, also paying to have my own ultra scan tomorrow because my head is scrambled and I can't stop thinking about my children. I'm a mess! Nsh referral letter came through today and says my appointment will be virtual! How will they achieve any diagnosis that way??! Thank you for sharing your stories, they have helped me.