Anxious and confused

Hi, I was diagnosed with endometriosis a few years ago and although I'd been managing it fairly well until recently, my GP and co sultanas at the hospital have never really seemed to have the time to sit down and talk to me about it. All they do is tell me to either manage the pain with painkillers or say I should go on the mirena coil, which for various reasons I don't want to do. Recently the pain has been getting worse and I've just come back from an ultrasound which confirmed I have another cyst on my ovary (probably nothing too sinister) and increased adhesions. I've come away feeling really low in a way that I haven't for a long time. I don't know what this means, or how bad it is yet. And I keep reading things about the increased risk of cancer with this condition which terrifies me. Nobody I know suffers from this and I feel very alone. I know this sounds very wimpy and I'm sorry, but my partner gets stressed when I get upset about it.

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  • I can completely see and understand where you are coming from!!

    I had a keyhole surgery in November, to remove a large cyst. The cyst dissapeared by itself but they found some endo and removed this instead. I thought all my problems were solved.

    I still have pain at my right side everyday. Sometimes worse sometimes it is ok. I have been backwards and forwards to gp appointments, had another scan to check if i had another cyst on my ovary, which wasnt the case.

    Painmedication, stretches before i need to do anything was gp's advice. You got endo so you just have to live with it another gp said.

    I dont think gp's really know and they try to help, but it isnt very helpful with this sort of comments.

    I am going to a physio now to help with exercises, but isnt really helping me with pain complaints.

    Endo can cause cysts and i think endo itself isnt cancerous, but it causes so many horrible 'side effects' to your body and it can make you feel awful.

    Just keep asking, and make sure they

    will find out about this cyst!!

    Good luck!!

  • Hello - I completely understand your anxiety. I had very similar concerns myself. In fact, I bring up cancer at virtually every opportunity with my Drs & consultant.

    I have been told that there is no more likelihood than the usual for someone of my age / weight /lifestyle etc.

    My consultant advised against the ovarian marker test which has been in the media recently, with high profile celebs, as women with endo are prone to 'unusual' results. Instead, my consultant has given me open appts so I can request when I want to see her based on pain/anxiety etc.

    I don't know if this helps at all. But like you this was my concern when I was diagnosed and I do feel reassured now.

    Take care and perhaps make multiple Dr appts for different areas of the endo or phone your consultant. ( I'm basically a real pest, but I don't care - I've even taken someone to make notes before!) x

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