Endometriosis UK

Damn it - I think it's back after total hysterectomy

Total hysterectomy in June 2016, stage IV found but not treated as only went in for the hysterectomy, no HRT at all so as not to encourage it to come back. 18 months of sheer bliss, I was like a new person. BANG about 4 weeks ago started to get the sciatic twinges on the left, gradually it's ramping up every day to groin and hip twinges. It's back isn't it. I mean I know it never went away just went to sleep, but my level of despair is immeasurable, I feel is if someone died just feeling all these familiar aches and pains.

I have a GP appointment next week and armed with my stage IV diagnosis I am going to get referred to Oxford for what I am imagining will have to be excision surgery as I'm assuming hormones are not an option without all the pre-hysterectomy gubbins.

I'm so upset really, just wanted to come to this great place for a rant. XX

5 Replies
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oh no poor you :(

Could it be adhesion do you think or some nerve damage / disturbance, I know its a bit late after surgery if you were feeling good though, but just a thought.

Good luck with your GP anyway hope the wait not too long for you .

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I saw this and my heart sank, i have stage 4 I’m scheduled in for hysterectomy 15 March, I am keeping my ovaries and I am aware the endo will come back I was just hoping i wld get a good spell without it n seeing ur post just makes me worry I may not get as long as I wld like, do they just keep layering it of it comes bk? When do they say enough is enough no more surgery to remove the endo? X

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Don't lose hope, everyone is different and there are endo benefits from the hysterectomy depending on your main symptoms x

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Iv also got a bicornuate uterus which is main reason for hysterectomy after 3 pregnancies my womb is all messed up he thinks it's main cause for the heavy bleeding, iv got pcos also and my bladder is stuck to my stomach, I am in pain everyday with my hips, back, groin area, legs, pelvic, everything hurts and he basically told me it has to be a hysterectomy (for bicornurate uterus) iv had every hormone treatment, my endo is also very complicated it's attached to my blood vessels and uterine artery my bladder and bowel pretty much everywhere and i have very extensive adhesions my last lap I was told they cldnt help me as if they had tried to go in and laser it I make have bled out on table if they weren't prepared, now I'm with a specialist and i have to have to specialists attempting the op along with a bowel and urologist, if I can have a year pain free I suppose it's better than nothing at all. I seem to have rambled on quite a bit there xx

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Let me know how it goes. I’ve been told

I need a full hysterectomy and I have my doubts on the success of it.

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