Deep Infiltrating Endo

Hey all,

Hope you are all having pain free days!

I had a hospital appt this am for my MRI results, which show deep infiltrating endo - hurrah I'm not going insane but what on earth happens next! I have been off work for 8 months now, following severe daily pain from a lap to remove spots of endo. I've had 3 months of zoladex, which whilst come with hideous side effects, brought the pain down though did not completely get rid of.

The consultant started with we will put you back on zoladex and that will be that. To which I argued, am I seriously supposed to spend the next 20 odd years in agony having the odd 6 month break with zoladex?? So I asked can you not remove the deep infiltrating end? No not really, it would turn into a hysterectomy, but you're only 26 so we won't consider it.

I don't want kids, I never have, and I'm very sure I never will. The 'you'll change your mind one day comments' drive me bonkers!!! I just don't like children, and I don't want them. Give me a puppy and I'll be one happy lady! So I push for the hysterectomy, she's sent me home, booking in a second opinion with another consultant, as 2 consultants have to sign off that it is the right thing.

If they refuse, I feel like what is the point in carrying on, I can't leave the house, go out and see friends, live a life of any normality. How do I convince them that for me, this is the right thing?! How do I get them to take me seriously! I have not clue, but if they say no, what do I even try next - I won't be able to hold a proper job being on and off zoladex - and really 20 odd years of on off menopause - the hot sweats are horrific!!!

Any advise welcome! (But PLEASE do not tell me I might change my mind! that awwing that everyone does around babies - I don't - I try to remove myself from the situation! Nothing against them, I just don't want one)

Thanks in advance! x

3 Replies

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  • Hi I also got diagnosed with DIE last month from mri so can I ask did they tell you where all your deep endo is? Mine is both uterosacral ligaments right ovary mildly on bowel and I think there is a nodule on bladder.but I have to have a cystoscopy to cinform endo.you can ask to speak to another Dr and stick to your guns it's your body take care Michelle xx

  • I agree with below whereever it is they should be able to offer another lap to try and correct this.

    Im 41 no kids never wanted them either so i totally get that.

    However i always believed in hanging onto the uterus for as long as you can for all the other reasons.

    Having a hysto will not cure endo it will still grow as the ovaries are still there.

    If they dont excise it all at time of hysto your pain will probably come back.

    Change the doc mate get an endo specialist and have another go at getting it out.

    I personally will never take that menopause medication no matter what has to come out!

    Look at another lap first mate do this in stages.

    Kind regards

    Rose

  • Regardless of wanting kids or not, a hysterectomy is a bad choice for you, your best option would be to get refferal to a bsge centre, and they will excise the endo,t here is absolutely no reason for them to take a healthy womb as at your age you would keep overies. And the estrogen us what feeds the endo, so could come back, I've had a hysterectomy for adenomyosis but still in daily pain. From endo, thankfully I'm now under a bsge centre and am awaiting a laparoscopy for full excision as im sure my general gyny missed some, nhs guild lines state that deep endo should only be treated in a bsge centre, please check out a lady called Lindle on here, she is fab, read her posts, and go back to gp for bsge refferal, good luck, and don't except anything but the best treatment, as what you gave been told is wrong xxx

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