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

Please let us know how you go ,I'm sure you'll be fine but it is still very scary  Best Wishes Jenny x

So glad I found this thread I have just started my own before I read this feeling reassured, but be glad when i get my scan done next Wednesday.

Yes its a great site there's always someone willing to talk and reasure ,we've all been in that position when going for tests and scans etc whether good or bad news there are lots of caring people on here as well as the nurses they are great for worries and information ,I hope you get good news from your scan.

Thanks, will do...x

Nads

Hello, I'm joining the thread after I received a letter referring me for a US Pelvis in 3 weeks time. I checked my test results online to see my Serum CA 125 result was abnormal, so assume this is why. I haven't managed to speak to my doctor, only the receptionist at the GP, so am freaking out a bit that it's something really bad. Hoping for the best but 3 weeks is a long time to worry :( Slightly reassured by all the posts on here. 

Hi April_15, 

I totally understand, I went through the same thing. I booked an urgent appointment with my GP and explained how stressed out I was with the waiting and they sent a letter to the hospital to get my appointment escalated to a few days instead of weeks.  Perhaps you could try that?

My scans came back fine, they found 4 fibroids which they deemed as small, but I have a futher referral to the gynaecologist....that's in September but I'm going to go through my health insurance to speed it up. Good luck with your tests.

Nads.

Hi Nads,

Thank you so much for taking the time to reply to me, I appreciate it. I've got a telephone appointment with my doctor today so hopefully can get some clarity. 

So glad your scans came back fine, I didn't know anything about this whole thing until yesterday, can't believe how many other people have been through similar. 

Sending healthy wishes to you! x

Hi Nads, 

I realise that this was a while ago, however I was wondering if you ever managed to get any answers for your ca125 levels? I’m currently going through similar with fluctuating levels and scans finding only small fibroids. 

Hi sorry to jump on this post but I also had a ca125 test along with other routine bloods done, not urgent the gp told me so I have all my other results on the NHS App but my Ca 125 is not available until the 13th October!! I can’t understand why? 

Hi all… new to this forum and wondered if any of you had any updates?

I’ve been experiencing unexplained fatigue and dizzy spells, along with irregular (and now have seemed to have stopped) periods. I also have slot of bloating and cramps which come and go.

After many blood tests, they checked my CA125 which was at 90.

Similarly to all your comments, I am extremely nervous and this wait for the scan feels so overwhelming. 

I’m wondering if anyone else has had any results back?

And if anyone else has experienced similar symptoms - particularly periods stopping. 

Hi all… new to this forum and wondered if any of you had any updates?

I’ve been experiencing unexplained fatigue and dizzy spells, along with irregular (and now have seemed to have stopped) periods. I also have slot of bloating and cramps which come and go.

After many blood tests, they checked my CA125 which was at 90.

Similarly to all your comments, I am extremely nervous and this wait for the scan feels so overwhelming. 

I’m wondering if anyone else has had any results back?

And if anyone else has experienced similar symptoms - particularly periods stopping. 

Hi all,

I have a bit of an update. I had raised ca125 levels between 50-95 for a year and had multiple clear ultrasounds and a normal CT. I was referred for a diagnostic laparoscopy which I had 3 weeks ago and stage2/3 endometriosis was found, I’m still awaiting biopsy results from peritoneal washings and polypectomy  and will hopefully get these on Tuesday.

sending love to you all, it’s not an easy wait xx