Hi, this is my 1st time in a support group of any kind. I have grade 4 Endo, i've been through the house a bit over the past 2 + years with my doctors & hospitol with loads of operations etc to remove varius bits including tumour. Feel at wits end when they tell you that your insides are soo messed up yet they can't do anything due to it being soo bad & if they did I would end up with stoma bags.

1 Reply

  • Hi there,

    So sorry to hear you got such extensive endo and been through so much. That must be so hard to hear those words that your insides are so messed up they can't do anything. That is my biggest fear!

    I had a Laparoscopy in June 2014 by a general gynae and was told I had severe endo and everything is just one big lump and she didn't dare touch anything.

    I think this is due to endo but also due to my history. As I was born with cancer which affected all my internal organs apart from heart and lungs. The organs were stuck together then and the drs told my parents that they only managed to separate what they could. So I was shocked but also not surprised by what the gynae said in 2014.

    I am now awaiting a diagnostic Lap and removal of cysts, right ovary and tube by a BSGE centre so they can give me a detailed action plan. But I am scared and fully expecting to receive the news you unfortunately have: that nothing they can do! Stoma bags are also a fear of mine too. BUt I am also hoping that as they are specialists then there may be hope.

    Were you being seen by a BSGE centre? If not maybe worth asking for a referal as maybe they can offer more hope for you. x x

    Hope you have people near you that are understanding and supportive. And you have people who you can talk openly to, be it someone close to you or a counsellor.

You may also like...