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Thread: Diagnosed with stage 4 endometriosis and worried my life is over

  1. #1

    Diagnosed with stage 4 endometriosis and worried my life is over

    Hi all,

    I posted back in December about undergoing medical tests for some sudden worsening health issues, mainly lower abdominal pain. Well after nearly 6 months of getting nowhere with the NHS who have continually fobbed me off despite me being in severe pain, I went to see a private endometriosis specialist (as I started to question whether all of my symptoms could in fact be endometriosis, as I've also struggled with my periods etc since I was a teenager and I'm now 33). Anyway, he did a transvaginal ultrasound scan and has diagnosed me with stage 4 rectovaginal endometriosis (the most severe and most complex kind). Basically I've got endometriosis lesions all over my pelvic organs, I've got a large nodule between my rectum and vagina which he could feel and which was really painful, and my left ovary is also stuck behind my uterus and is adhered to another nodule. He thinks my endometriosis is more extensive than what he could see on the scan as I've got pain in other areas and ongoing bowel issues. I'm absolutely devastated as I was hoping that I wouldn't have endometriosis at all, even though I suspected I did have it, but I certainly wasn't expecting to be told it's so severe. My consultant says I need to have urgent excision surgery to remove the lesions, unstick all of the bits that are stuck in the wrong place etc, but there's a chance that it could be really complex once he actually has a look inside. I'm going to have to go private for this as the waiting list at the moment on the NHS is 2 years (!) for the urgent endometriosis cases. I've been told it will cost around £11,000 but luckily lots of family members have said they will help out so I should be able to get the money together for it. I am booked in for surgery on 13th June.

    I'm absolutely terrified that my life is now over. I was supposed to go back to uni in September to start a PGCE but I'm now worried I won't be able to do it. I've got 2 interviews for this lined up next week and I might have to cancel them as not only am I still in loads of pain but my anxiety is through the roof and I'm having daily severe panic attacks, I'm certainly not in the right frame of mine to prepare for these interviews as I have to do PowerPoint presentations, written exams and things like that. I went to my GP about my mental health in relation to all of this but she was useless and only directed me to Endometriosis UK support pages.

    Basically I'm worried that this is it for me now, that I'm going to have a rubbish life full of pain and shattered dreams. I'm already not working due to my ongoing symptoms (I used to be a nurse and had to quit my job in January).

    I was hoping somebody could give me a bit of support, hope, and reassurance that things will get better. I'm absolutely on a negative spiral and can't see a way out. I'm also panicking about the surgery as well and about everything that could possibly go wrong, if it will make my symptoms worse, and I'm worried about the financial implications too.

    Thanks for reading.

  2. #2
    Join Date
    Nov 2009
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    Re: Diagnosed with stage 4 endometriosis and worried my life is over

    Hi there,

    What a lot to take on board - its entirely understandable that life feels in a state of frightening flux at the moment and you are in a state of shock. I will say this (and I have no experience at all of endometriosis, so hopefully somebody else will come along on that front) most things feel worse emotionally at the very point of diagnosis. Usually, bit by bit as time progresses you are able to process what needs to be done, then stage by stage things happen and appointments occur and surgery....and it all becomes clearer and more manageable. Time does allow things to fall into place, and I know that at the moment everything feels overwhelming and there are so many plans that feels they are up in the air, with your mind whirring with worries, but nothing is over. Some things might need to be temporarily deferred (I'm sure if you were honest with your interviewing body they could find some way around the problem), but you need to concentrate on your physical wellbeing for a while.

    I'm sorry I can't add much more as the 'Stage 4' diagnosis of this condition isn't something I'm familiar with, bumping back up for you.

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