4.5cm chocolate cyst on left ovary

[Jade_lucy]

Hi, I was diagnosed with endo back last June after a routine scan. My symptoms started in 2014 however endo wasn’t picked up! I have just had another scan to check on my ovaries and I have a 4.5cm endometrioma cyst on my left ovary 😭 my GP wants me to have a CA-125 blood test which I have had before when I had some general cysts and it came back raised but when repeated was back to normal. I’m so worried about having the blood test again. They say it will more than likely be raised if you have cysts anyway. I suffer from health Anxiety and I’m always panicking they having endo and the chocolate cyst will turn nasty! 😭😭 I’m 30 years old and have two children age 8 & 6

Please can you share your thoughts and experiences regarding endo and large cysts

[girli1111]

Hi jade, I’ve had large cysts - one over 10cm. I’m 48 and have now had both ovaries removed in two operations. One ovary was engulfed by a dermoid cyst, the other by two endometriomas. My ca125 was 175 the first time and 473 the second time, I was scared witless, but was ‘just’ endo. The raised ca125 the second time, plus some imaging results meant I was seen urgently by gynae oncology to rule out cancer. So don’t let the numbers scare you, it may just mean they do more investigations.

[Jade_lucy in reply to girli1111]

Thank you so much for your reply. Wow 10cm! That makes me wonder why an earth I moaning when you have one of that size! Going to try not to panic. Having the blood test tomorrow so hoping it will be in normal range

[Tillyfloss]

hi. How are you doing today? Do you get much discomfort with your cyst? I had a ruptured cyst in Sept 2016 and my ca125 came back as 2146, alarmingly high was the phrase and I had scans the next day ( nhs) to rule out anything nasty, my case was sent to the nearest bsge centre and checked and it was the endometriosis and cysts causing the high readings but it was a very worrying time. I've since had surgery to remove the cysts ( got to over 10cm could see it when I was lying flat) and the reading has dropped to 200 which they were happy with. Endometriosis can put things out of wack as your body tries to fight it off like any other illness, however despite them telling me this I still couldn't help but worry. If you want any more info just msg me 😊. Xx

[Jade_lucy in reply to Tillyfloss]

Hey 😊 I’m feeling a little better today thank you. How are you? I had my blood test this morning and they say it should be back tomorrow afternoon so at least I don’t have to wait ages for the result. Wow that is a high reading! I would be having a full blown panic attack if mine comes back high. I just can’t help but panic and think the worse case scenario with everything! I wish I didn’t have health anxiety to go with everything else! 😭 thank you so much for your reply. Xx

[CP17]

Hi, I had a chocolate cyst which was 8 cm before it was drained during my surgery, and has now grown back to about 4 cm. If it's any reassurance, the vast majority of chocolate cysts never turn cancerous (99 percent are benign according to an article I read, which unfortunately I can't remember the title of or provide a link to). I had a biopsy during surgery and mine was not cancerous. As you and others have said, CA-125 levels can be slightly elevated due to endo. Best of luck

[Jade_lucy in reply to CP17]

Thank you! That is very reassuring 😊