I don't have raised ca125 levels they were normal which is a good sign I hope! I really hope it's a fast process as I am in a lot of painmentally and physically it's all I think about, I have my second ultrasound next week so I hope after this I will have my operation date! Did you gain any weight from having the cysts? 

I had one huge cyst which they called mucinous and abnormal I think from memory, they were not sure if it was cancerous, thank goodness it was pre cancerous and all gone now. It was 45cm and the surgeon afterwards gave the impression it was size of a baby! I also had a full hysterectomy plus abdomen lining removed, so after 5 days in hospital I came out almost 3 stone lighter, although I didn't eat at all for 5 days, they said that was the drugs I was on. Unfortunately all that weight is back on due to menopause, but at least I am all better and feel good

Hi 

I'm in a similar position to you. I'm so sick of waiting! 

My CA125 are raised and I have two cysts on each ovary they think mine are from endometriosis but it's been one hell of a rollarcoaster. Every few days gone from we don't think it is, to might be cancer. 

Currently waiting for an MRI appointment and second lot of ultra sound scans. But the waiting for appointments is immense and in itself so draining. 

Like you, I'm in loads of pain and look 5 months pregnant keep getting lots of looks at work! 

Hope you get your operation appointment soon. 

It's the unknown it's a terrible place to be in I'm sure everything will be okay for you and send all my love if you need someone to talk to I'm here and I will definitely right the outcome of my operation once I've had it 

Hi everyone,

I've just had a 13cm cyst discovered through an ultrasound on Monday, after experiencing intense and severe pain. They've told me it is solid so I've been fast tracked to 2ww ovarian cancer clinic. Absolutely terrified

My CA125 is also raised at 228. I've been waiting a week already with no appointment and it's driving me insane. I just want it out of me.

How did all of your surgeries go and did you get to keep your ovaries? I'm 31 and not had any children yet. 
 

Hope you are all well.

Roxy

Still not had my operation they should be able to keep at least one of your ovaries 

Hello everyone,

I have been reading posts on these chat forums for a few weeks now as trying to find some reassurance/support from my recent findings. I was sent for an ultrasound scan back in April after experiencing intense pain on my left abdomen area and my dr referred me quite quickly.  A 7x8x5cm mass was found on my left ovary via ultrasound and the sonographer initially thought a dermoid cyst was the culprit but wanted me to go for a mri scan to be sure. 7ish weeks later, had the mri and waited about 5 weeks for the results which came by post, my gyne said the mass looks like a endometrioma and my right ovary, uterus etc is all normal but wanted me to have a ca125 test done for complete assurance. This is causing me a lot of anxiety as terrified what the results may show, the C word has not been mentioned in any case but I have major health anxiety and this is sending me a bit over the edge. I had the ca125 test done yesterday. 
I am 35 with 3 children and do not have any symptoms of endometriosis and from what I have been reading an endometrioma is normally associated with endometriosis. Am I worrying needlessly?

I have just been discharged from hospital after an ovarian cyst has been found I'm awaiting an MRI and biopsy I'm scared and angry the cyst is they say 14cm in length, but what makes me really angry is the pain I suffered at the weekend which had me rushed into hospital I had over 23 years ago when pregnant with my daughter and I believe this cyst has been inside me since even though I had countless scans and many hospital admissions during my pregnancy they neglected to remove this cyst and now it's so bad I have been told I have to undergo a hysterectomy, it's made me so angry.

Has anyone ever experienced urine retention with a cyst ?

Hi emsy677,

Hope things are good with you. I had a hysterectomy in 2019 due to post coital spotting and very heavy periods. I kept my ovaries. In May this year I saw my GP to talk about starting HRT and mentioned that I'd been having right sided pain around my ovary. I was sent for a scan and they said I had a small cyst but it had a septum so I had to have the CA125 blood test and a repeat scan. The blood test was fine, I think my level was about 9. The repeat scan showed it was still there but had shrunk slightly. The sonographer asked me if I had Endometriosis but I had never been told that. 

Anyway, the ovarian pain continued and yesterday I had both ovaries removed. The registrar explained that when they cut one of the ovaries a load of brown fluid came out. She said they think it's an endometrioma and is common in Endometriosis. Like you I've never been told I've got Endometriosis. They're sending the ovaries to histology so just waiting for the results. Have you heard anymore?

Take care 

Sophy