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 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. 

Hi mummy_vibes, 

Let me tell you , they cannot diagnose anything virtually. They also cannot diagnose any form of cancer without a zillion tests and scans. I've had 2 ultrasounds, 3 CT scans and last Sunday and MRI, I joked with the hospital that I only need an X-ray to get a full house on scan bingo. I'm 43 and my ca125 is 65, 35 is considered normal , I also have a 10cm ovarian cyst. I've had people say it's concerning, other people say not to worry. Truth is, until it's out and tested I will not know. Please try not to worry, worrying doesn't solve tomorrow's problems, it only robs us of today with our babies. You got this!! It helps me to write things at night in a journal, kinda dumps all the thoughts from my overactive mind on paper xxx

Thank you for your reply. I'm trying to keep myself busy but the moments inbetween are terrible. I just want to know what - if anything - I'm dealing with! Wondering how much my period might have played in a high reading. I had the test on day 3, plus I feel that I am peri menopausal... 

I was ovulating when they took my blood tests and I think at 43 possibly pre-menopausal. My doctor said that she's seen levels above 100 and ladies not have cancer. Try not to worry. I find that the local doctors just tell you what they think , when you see the specialists they put you at ease x

You're very sweet, thank you for your reassuring words. Are you going to have your cyst removed? Can you opt to even if not recommended by drs? 

Unfortunately my cyst is so big it needs to come out. It's causing so much pain as it's sitting on my uterus. They are deciding if to take the cyst, that and one ovary, or everything. At this stage , I just wish they'd hurry up tbh x

I bet. I wish you well and hope you can successfully put this all behind you and get back to enjoying life and your family x

I bet. I wish you well and hope you can successfully put this all behind you and get back to enjoying life and your family x