New to this endo stuff

So I'm quit new to this whole endo stuff. About 4 and a half years ago I started having pain during sex and though it was normal because I mentioned it to my nurse and she said it common to get pain in the curvics but about 3 years ago the pain moved to one side from my curvics area to the side near my ovaries so I went to the doctors it took them about 2years to have a ultra sound scan, they saw a cyst and though it was that I was told to go back in 10months I was still having pains and the cysts were gone. Finally last year I was referred to a gynaecologist and they give ma a lap in November to see why I was having pain. They found some endo and removed it, I was told it should be ok now I was given no information at all so I had to do some research for myself in February the pains returned and I went to the doctored it has taken 6 months for them to me on zoladex I'm still very scared and I worry a lot as I still don't know what to expect and how this is going to effect me in the long run.

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  • Hi zow89

    There's good news and bad news -

    The bad news is that doctors are useless when it comes to endometriosis, it's like they don't believe us or don't care! You've got to fight for yourself and make yourself heard and just keep going back and back until they listen.

    The good news is there is so many of us on here in the same boat that we'll give you lots of help and advice. It's good to know you're not alone.

    The fact that you've had a laparoscopy and they found endo means that it may have returned, there is no cure so it may have grown back. And the only way to tell is to have another lap (vicious circle I know!)

    I know it's worrying but try not to, endometriosis uk has some helpful advice on their website. I also bought a book about it which I found unbelievably helpful too.

    Good luck babe, here to chat if you need to

    Hayley x

  • What was the book you got I think it would be a good idea for me to read and for my husband as he is finding difficult where he can't understand and all he wants to so is help. Xx

  • Hi

    The book is called "coping with endometriosis" it's written by Robert h Phillips and Glenda motta.

    It's a really good book, there is a section at the end called "living with someone with endometriosis" so this should help your husband.

    When I first got the book I went through and highlighted loads of useful information.

    Hope it helps xxx

  • I ordered the book yesterday just gota wait for it to arrive. Thank you for telling me about it I think it's gonna be a big help.

  • Hi I volunteer for Endometriosis UK and we have a great website with lots of information. We also have a telephone service if you just need to chat to someone and on the website there's lists of groups you can attend too.

    Hope this has been helpful :)

  • I to found out after i was having bleeding after sex,i had a laparoscopy found pollops on my womb an endo which they lazerd this was over 5yrs ago ,now in the mean time things have got progresably worse.I have had lots of discharge had lots of tests to see if it was an infection which all came bck clear.they suggested the depo which i had over 10yrs ago and was great then, i tried it again over 9 mnths ago and it was the worse the thing i done i had so much pain,sore breasts,bleeding loads,lots of painkillers and now im just getting over it,my periods arnt normal and now the doctor is suggesting the coil,which i dont really want because its messing with my body even more.I dont think the doctors really care and just want to give you painkillers.i dont think they want to give another laparoscopy but you have got to push for it as i am trying.

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