12x8cm endometrioma possibly boderline tumour

Hi everyone,

A couple of years ago after numerous tests to rule out other things I was told by GP I had IBS. Sticking to a low FODMAP diet seemed to help but recently I felt the need to pee quite frequently and was quite tender on the right side of my lower abdomen so went back to GP and after a scan a large endometrioma was found. Since then I had an MRI and ended up in A&E twice on morphine.

On my las visit to A&E a member of the gaenocology team came to see me who said she had been in the meeting discussing my MRI results and told me that my cyst was in fact a dermoid cyst and completely benign and nothing to worry about. Three weeks later I visited my consultant for the results of my MRI and she told me I had an endometrioma with aspects they were concerned about. She said they wanted to operate as soon as possible (in the next 2-4 weeks) and that they would remove the cyst and while I'm still on the table send it off to pathology and wait for the results. If it came back cancerous they will give me a hysterectomy there and then!

Needless to say this news hit me like a truck. One minute I am told it is benign and the next it may be cancer? I asked her if I could wait that long for surgery and she said that the cyst looked borderline at best and that we had time to play with? I came out of there completely devastated and in shock and I have been panicking ever since. Any words of wisdom would be greatly appreciated. Is this serious? Should I be considering going privately for treatment? I'm 36 btw, have two children and no history of these types of cancers in my family.

Thank you for reading.

2 Replies

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  • Hi SJay, l absolutely understand how hard this time must be for you with so much uncertainty. I had a very similar experience with medics being very ambivalent around whether my complex cyst was endometria, dermiod or possibly cancerous. My CA 125 count was rising so that was becoming much more of a concern. I made the decision that at 42 l was not going to have any more children and to avoid further uncertainty l pressed for a full hysterectomy with both ovaries removed at the same time. The operation went well but waiting for the results was awful. I work in the NHS and it is genuinely difficult to differentiate between benign and cancerous cysts via sonography without removing them. I was lucky my cyst was an endometrial but l don't regret having a hysterectomy. l am on HRT so l feel absolutely fine and no longer in any endometriosis pain. Best of all l am free ofthe endless round of checks and uncertainty. I recommend thinking through what would be best for you if leaving it to the operation just adds more under to the process. It sounds like your consultant is being proactive which is reassuring. Really hope all goes well for you and your family. Kathy

  • Thank you Kathy for your reply. I'm so pleased it all went well for you.

    If I need to have a hysterectomy then so be it. I think I am more concerned I might have cancer than anything else. The waiting for an appointment for surgery is agonising. I'm not sleeping and can't get rid of the horrible thoughts creeping in my head all day, everyday.

    I've also been googling borderline endometrioma's and have ended up scaring myself even more. I'm also angry that one person as told me my MRI showed a benign dermoid cyst and then another says it is an endometrioma which is concerning. They were in the same meeting together discussing my results how can they both have a different diagnosis?

    Also, no-one has mentioned anything about a CA 125 to me. I had bloods taken before I had my MRI, the first time I was discharged after ending up in A&E in agony and again in A&E the second time but no-one has told me the results for those or what they were for. Should they not inform me if they found anything concerning? Is no news good news? Or have they even checked this?

    I just don't know what to do.

    Thanks again for replying.

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