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 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,

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

I know this was 2 years ago but wondered what your of one was as going through the same thing right now x

Hi all, I have just come on here as I am worrying myself sick, I am post menopausal and had a bleed dr took bloods and sent me for 2ww scans my ca125 levels are 55 but the dr at tthe scan said my womb lining looked fine and she would send my results to dr on Monday,, I called the dr no results but then received a call from hospital say the gynaecology wanted me to come in for a face to face appointment in two weeks. Has anyone else had a solitary experience 

Hi 

just came across this post. I’ve just had my ca125 back at 92 level I’ve just started HRT and I’ve been booked for an urgent scan. I’m absolutely petrified. I was on my period when I had my blood tests so I’m hoping it’s this. I’ve already googled myself to death

it has been nice reading this it’s put me at ease a little bit my anxiety is through the roof 

the 2 week wait is going to feel like forever 

Hi all

this thread has been a real comfort this evening.

my ca125 level was 41 and I've been beside myself with worry. Now it feels like hoping is almost tempting fate, as it's a small elevation.

scans for me next Thursday. 

im 42, attended the GP with period issues. I'm praying it's not OC. My MIL had it 25 years ago and died. I'm so worried.

sending love to all x

Hi, I also had a blood test and my CA125 level is 42, I am bricking it now.

have you heard back? 

I’m new in here and a nervous wreck. I first went to my GP in July with concerns around irregular bleeding, she looked at my cervix and stated it looked like an ectopion cervix but referred me for ultra scan. 

I had an ultrasound and they stated possible fibroid on cervix along with swollen kidney. The results landed with my GP who asked for another scan as she wasn’t happy. 

I went of another ultrasound where they stated possible fibroid on cervix and a mass with a question mark. 

I then had a blood count done in the meantime while waiting for a gyni appointment to come through. 

I went to gynaecologist who did biopsies and stated my cervix was sloughing and crumpled!! No idea what this meant. I then received my CA125 results 1047

In the mean time I bae had MRI and CT 

Got a call today I have to go in Tuesday to discuss my results. I feel sick 

I’m new in here and a nervous wreck. I first went to my GP in July with concerns around irregular bleeding, she looked at my cervix and stated it looked like an ectopion cervix but referred me for ultra scan. 

I had an ultrasound and they stated possible fibroid on cervix along with swollen kidney. The results landed with my GP who asked for another scan as she wasn’t happy. 

I went of another ultrasound where they stated possible fibroid on cervix and a mass with a question mark. 

I then had a blood count done in the meantime while waiting for a gyni appointment to come through. 

I went to gynaecologist who did biopsies and stated my cervix was sloughing and crumpled!! No idea what this meant. I then received my CA125 results 1047

In the mean time I bae had MRI and CT 

Got a call today I have to go in Tuesday to discuss my results. I feel sick 

Hi Bobbywobby I wanted to wish you luck today with your appointment.  Please let us know how you get on.

Lee x

Thanks for your message. Iv been diagnosed with stage 3C1 cervical cancer it’s gone to my lymph nodes nodes in my stomach. I’m waiting g a PET CT scan and the MDT on Friday for plans.

how are you getting on? x

Morning ladies sorry to jump in the conversation but it tagged me in as I commented on 2024 , my CA125 was 69 and I was diagnosed with stage 4b Ovarian peritoneal cancer . … they said it was incurable but treatable.. I had chemo which did not do a great job then 10.5 hrs debulking surgery where they removed cancer from the surface of most of my organs and gave me a full hysterectomy , followed by more chemo and then targeted therapy… I have been in remission since May 2025 which is why I wanted to jump in the conversation… I am so sorry you are all going through this but just wanted to say stay strong girls .. keep positive it’s the only way to get you through… I know it’s hard but you have to believe you will get through this! They think I now have skin cancer so I’m due to get a mole removed off my back .. hopefully it hasn’t gone any deeper as I have big family history of skin cancer … these chats help because people not going through it will never understand how scary it is .. but we have each other so let’s talk .. take care and I’m praying you will all make a good recovery and get the result we all want xx