Had enough!!!

I was first diagnosed June last year with stage four endo, I was meant to have my op to laser and remove it September last year. I've been messed around and forgotten to be put on the urgent list and my op was cancelled then changed 3 times! I've now got a new surgeon as mine is on long term sick leave and a bowel surgeon who wants to see me after My MRI results have come through and I'm worried it's got worse as they are pushing me quickly and being very cautious! My last surgeon was never this cautious!! Can anyone give me any info if it's happened to you or an insight into it as I'm worrying and nothing is being said to me! I have written a formal complaint so it's being pushed but I know nothing!! Panicking it's a lot worse now which I know it will be after nearly a year of waiting! Sorry if people don't understand this all and please ask me questions about it. I am at the end of my tether, I don't know what to do and think!!

5 Replies

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  • Hello,

    I have been diagnosed with stage 4 endo 5 years ago. First time I had my surgery done by a stupid doctor who didn't know exactly what endo is. He removed one ovary, one tube and he was talking with me like he is at least God for saving me from death. I was very angry with him, as I didn't walk in that clinic dying, I was going there with hipe that he can take my pains away. At the second surgery, I met a fabulous doctor, that was explaining to me everything, step by step. What I undrstand is that if the endo is everywhere, as it is in stage 4, you should take treatment before surgery, so the endo can be in stand by while they are operating it. Also, you need to take treatment after, so that the endo won't come back after the surgery. I was on something similar with zoladex 3 months before and 3 months after the surgery. After this cure(you are not allowed to take zoladex more than 6 months), I've been put on Visanne, which is dyenogest and I am doing pretty well since 2014. No periods, no pain(only if I forget to take the pill), no endo at all. I know you can't find visanne here, but at least they can try to prescribe some progesteron or dyenogest, to stop the periods for a while, as stage 4 it's a lot to cope with. But you need to find a doctor that explains yoy everything before the surgery. It is your right to know everything about your body and about the plan they make for the surgery. Take care and I hope everything gonna be alright for you!

  • Hi Joanna, are you being seen by a general gynaecologist or at a BSGE centre?

  • By a general gynaecologist

  • Hi Joanna, sorry for the late reply but had to stay on at work.

    Stage 4 should only be treated at a BSGE centre as a general gynaecologist isn't qualified enough to deal with it.

    I know it would mean another delay to get sorted but if you have op with General then you'll have a higher chance of having to have another one.

    The more surgeries you have the more scar tissue you'll have which can cause just as much pain.

    With regards to it getting worse hormonal treatment is available to help with symptoms and progression of endo.

    But in the end it is your decision what you do and it has to be right for you, so listen to your instincts.

    I wish you lots of luck in whatever you decide to do.

  • The surgeon I've now got is the best they have and I'm so happy to have him he's being so cautious! He offered the hormone treatment but we have been trying for a baby for over a year and a half so don't really want that and I don't want to put my op off anymore. I've just come on my period and been in the worst pain I've ever been in!

    They have messed up so much as I was meant to have it done last year and was forgotten to be put on the urgent list I have no found out I've got cysts on both ovaries so I'm in a bit of a state about it all. I honestly don't know how we cope with having this illness!! I want it all done and over with!

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