Help need advice

Hi, I'm 20 I have recently been to doctors and told that they think I have endo. I'm going to see a gyno next week and I'm just wondering what to expect. I understand very little about it add no one had really explained to me, I know that this can affect your fertility and I am more than happy to start trying for babies now if that's what it takes, please can someone just let me no what to expect starting to get worried is all I think about. Thanks x

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  • endometriosis-uk.org/

    has a lot of info on Endo,

    but to me the best resource for reading about gynae pains is from australia

    it is a pdf booklet you can print off and keep, or just add the link to your favourites so you can refer back to it.

    endometriosis.org.au/images...

    If you do have endo, then there is no cure, even having babies doesn't cure endo, it just gives you a pause in the development of the disease while you are preggers and breast feeding but it will kick off again afterwards.

    If it is endo and surgery is the only way to diagnose it, whether it affects your fertility depends entirely on where the endo is growing and where the scar tissue from those patches of endo are also growing. I have deep stage 4 endo, in and on everything, bladder bowel too....but my remaining ovary is clear and my one remaining tube is clear too. So it doesn't dictate that having endo will automatically impact on your fertility. It can do, but it has just as much chance that it wont.

    Some ladies have hardly any endo, but end up with it in precisely the wrong place and it does stop them getting pregnant naturally, and as we are all different in where these patches of endo start growing none of us knows until it has been checked out in a surgery.

    If you are ready to start a family with your partner and you do have endo, then the sooner the better is generally the advice, as it can get harder to get and stay pregnant as the disease progresses.

    However the other option is to try and stop the development of endo in the first place, and that is usually accomplished pretty well by stopping periods. Can be done by taking BC pills back to back, or mirena coil or as a last resort GnRH drugs (cancer drugs) which pause things for a few months but this comes with risks and is a last resort only..

    Mirena coil gives the longest run without periods or with light ones. as it lasts up to 5 years if you can get through the waiting time of 4-6 months for it to start working inside you.

    If you are found to have endo, there could be hundreds of patches of endo growing inside you, and they will either try and laser the shallow ones off, or a good surgeon will cut them out if he can do so safely. There could be far too many to ever get rid of it completely, or it could be growing on an organ that wouldn't be safe to operate on. Or you might just have one tiny active patch and once it has gone, never be troubled again with it. As I said each of us is different.

    Plenty of websites around on endo, the endo diet (for pain relief), surgeries and medications, so use a search engine and read up all you can. There is a lot of homework you can do and should do, because not every gynaecology surgeon is an endo expert surgeon. Many are very ignorant about endo, so if you have some idea in your head before you see the gynae you will know what he/she is talking about and you will also know if he /she is talking hogwash too.

    In which case it is back to the GP for a referal to someone who does know what they are talking about.

  • I can recommend the Endo for Dummies book - it's really good and details everything from diagnosis to management.

    At your appointment they will discuss your symptoms and your options. Sometimes they will want to do an internal examination, or just feel your belly (especially if you aren't comfortable with an internal). Take as much detail as you can about when you have had period, how long they last, and the impact they have on your life (e.g. Missing work, not being able to leave the house). They will also discuss your diagnosis and treatment options. Sometimes they will suggest having something to stop your periods to see if that helps your symptoms, if you have already tried that they will often suggest a laparoscopy.

    With fertility you need to remember that if you aren't ready you aren't ready. You may have problems conceiving, but you may not and you are still young. There can be loads of reasons why people can't conceive (male factor is just as common as female factor fertility) but the most important thing is if you are ready - and if you are just going to TTC just because you think you might have problems in the future then it's maybe not the right time. Think seriously about your decision regarding this, only you and your partner can decide.

    Good luck at your appointment x

  • Thank you everyone for your responces, I get quite a lot of pain and my main consern is to get rid of the pain. I will reead all the things you all suggested before tuesdwy. Thanks so much

  • Had my appointment moved forward so I have been today to see the gyno I have now been told that I have ibs not endo, she asked no questions about my symptoms no examination nothing just decided that it could be endo but I have ibs. So angry had anyone else had this diagnosis? Thinking of asking for a second opinion. I was told by 3 doctors it was endo and the gyno after seeing me for ten minutes decided it was not

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