Just diagnosed

I was diagnosed with endo yesterday and although it was a huge relief to finally know what's wrong, I'm pretty scared about the future. I wasn't offered the chance to have it lasered out during the laparoscopy so will have no relief from the pain. I've been told they will put me through a fake menopause with injections. Has anyone had this? What's it like? I want to start a family but I don't know yet if it's going to cause complications

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  • Hi and welcome to the forum. I was in the same situation as you last August when I received my diagnosis. I had a lap to remove a large fibroid and then all the endo was seen. My surgeon didn't even touch it as it is literally everywhere. I'm really glad he didn't and referred me onto a specialist centre who will now excise the endometriosis.

    In terms of relief from the pain I think you should go back to your doctors and discuss this with them and see what pain killers they can prescribe. Their are many different types and if you do a search on this forum for pain killers you will find lots of other posts about this. When I was being discharged from hospital after my first lap last august I requested stronger pain killers and was given mefenamic acid which I only take when in excruciating pain and they are really useful.

    The fake meneopause you refer to is taking a gnrh drug. I started taking a version of this drug called prostap last week. The drug stops the production of oestrogen so that the oestrogen is not feeding the endometriosis. You really need to research this and ask many questions before beginning as their are many side effects although all women are different and don't have the same experience. This website might be of use endometriosis.org/treatment... the endometriosis UK website also has lots of information that you will find useful and there are many posts on here already from women taking these drugs so do a search for gnrh, prostap, lupron, decapeptyl, they are all gnrh drugs.

    Be hopeful about your future, I have spoken to a number of women personally who have had quite bad endo but been able to go on and have children, one women naturally conceived twice which surprised her doctors.

    One thing I always now do before any appointments with my consultant or doctor is write down a long list of questions and points I want to discuss and want answers to. I can't recommend this enough as it means that I leave feeling more informed. I would really recommend you do this for your next appointment.

    All the best

    Chris

  • Hi Chris,

    Thank you so much for your reply. It's really helpful. I will look into those medications and prepare a list of questions for my next appointment, which is only in two weeks.

    I'm still trying to let it all sink in but it's very helpful to have access to a wealth of information on here from people who have been through it so I can prepare for the next step.

    Thank you again for responding. It's nice just to hear from a real person who understands.

    Emily

  • No problem, I know how confused and a little scared I felt when first diagnosed.

    I'm not sure how much reading you have done but with pain relief quite a few ladies on the forum including myself have made changes to our diet by following the anti-inflammatory diet. You basically cut out foods that cause inflammation which causes the endo pain. Many of us have seen pain relief so it's worth looking into. The endo resolved website is good for this endo-resolved.com/diet.html and another lady on the forum posted a link to this site which I found useful.

    endometriosisrelief.com/end...

    It can all get overwhelming though so do everything at a pace that you are comfortable with.

  • I just started Lupron on Tuesday and I feel a bit weepy sometimes and I've woken up in the middle of the night a couple times and can't fall back to sleep. It hasn't been that long though so I don't know what's next. I just hope it works at least a little.

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