Reoccurring endometriosis after hysterect... - Endometriosis UK

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Reoccurring endometriosis after hysterectomy!

alisonlc profile image
6 Replies

January last year I had a total abdominal hysterectomy after years of painkillers, the mirena coil,xoladex the works I tried it all. They kept the ovaries in due to being 38 but in October I had these removed to the chronic pain returning

was ok for a little while but then the pain returned. Went for an MRI 2 weeks ago and have been told I have endometriosis on my pelvic area. Now I'm confused as I've been told by my doctor that it doesn't grow back which means the consultant probably missed it during previous operations. I'm very upset as had two healthy varies removed and now it constant chronic pain. Has anyone else experienced this

Please can anyone offer amy advice before going back to see my consultant

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alisonlc
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Tboag profile image
Tboag

Hi Alison, sorry your suffering still, my story is very similar, just abit behind you,

I had a lap in March last year diagnosed with endo (apparently all removed during lap) and Adenomyosis, so in July I had a TA hysterectomy for the Adenomyosis, after this which I recovered well from, I still had the familiar pains, it was great not to have the periods, and the 2 days of feeling like I was in labour with no baby at the end(I have 3 sons) every 3 weeks, but still the daily up and down pain, so I got referred to a BSGE centre, if your not with one then that would be your next step, and I had a MRI scan, got results last Friday, and nothing has shown up, apart from a thickened vaginal lining, not sure what that means, so I'm now going on injections fir 3 months while waiting for another lap and depending on outcome off shutting overies down, he will remove them too, as well removing any endo,

Endo can grow back, or carry on growing without overies,naps the body still produces minimal amount I'd oestrogen, and it's self feeding and could be microscopic, but more liking to have been missed if under genral gyne,

Did you have the injections temp menopause before they took overies?

Are you under BSGE centre?

Are you on hrt,?

How are you feeling as far as the menopause.?

alisonlc profile image
alisonlc in reply to Tboag

Hi Tboag thank you for your reply, I am on hrt and just had the dosage doubled due to still having night sweats. I had the injections prior to first operation but didn't help with the constant pain. I'm a single mum working full time and its affecting me daily now. I have just been referred back to the consultant who carried out both my operations but probably along wait. I'm on tramadol at the moment but feel they are messing with my head but I'm still in agony. Not sure what they will suggest next

Tboag profile image
Tboag in reply to alisonlc

Are you under a BSGE centre, with a specialist endo surgeon?

alisonlc profile image
alisonlc in reply to Tboag

What's a BSGE centre? I have a consultant from gynaecology who performed my two operations

Tboag profile image
Tboag in reply to Tboag

Have a look at a lady called Lindle on here, she has written some good posts, a BSGE centre is a specialist endo practise,have a look on the website

alisonlc profile image
alisonlc in reply to Tboag

Ok lovely thank you will do

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