Endometriosis UK
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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

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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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How do you feel post Surgery Sarah?

I have roughly the same recovery time as you. I let my tubes and ovaries go, I was stage 4 and had bowel shave plus 1 x ovary was swallowed up anyway so wd have lost it I believe. I got my cervix taken too just because my mind told me to let as much go as possible for fear of endometriosis having places to regrow..Im either mad or a genius eh!!!

I have a vagina still and I vaginal cuff which is where they stitch it off like a sock lol.

Very interested in your progress to date!

Best Wishes

Helly!

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hi, so I had my op 15th March, they took my uterus, tube and cervix and removed endo. my op was not as straight forward as they were hoping I was under for 6 hours there was around 30 drs/nurses ECT in theatre with me, apparently I kept everyone on their toes, endo was in very vascular places which caused lots of bleeding, every time they recovered some endo I wld bleed alot and they struggled to get it to stop then they wld move on to the next part and same wld happen again n again, I had bladder shaved as it it was also covered in endo and it was stuck to my abdomen. I also found out I had adenomyosis aswell. first 2 weeks was so good I was in very little pain only surgical pain but none of my usual bk hips groin pelvic legs, none wat so ever it was bliss, after the 2 weeks it slowly started coming bk, I was feeling very cramps in my belly like proper full blown period cramps/pregnancy contractions I was bk on the morphine, my legs were awful, everything that hurt b4 was aching again, it's been 3.5 months and I'm in so much pain more than I was b4 the surgery, I feel like an old lady shuffling about the house, I have zero energy which is no good when u have a job and a hubby and 3 young kids (9,4,2) If I'm home I spend my day curled up on couch with my boiling scalding hot water bottle x2 when I shld be taking my wee one out in fresh air n pushing him on swings whilst his sister's are at skool/nursery, I didn't get a date to see surgeon after op for a check up, I went to my gp who was so angry at this and cldnt believe the state I was in she says I shld have felt so much better by now, she wrote to surgeon who sent out a date for the 12th November 😲 again gp was mad and I was sent a new date for 10th july so fingers crossed they can do something for me cos right now I feel so awful n useless to everyone x

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I'm devastated for you. Have you been down the road of other investigatory like colonoscopy etc? To rule out your bowel causing you issues? I believe I need this. I could have cried when I started feeling my symptoms return including my right sided stabbing pain this month at the time my menses wd b due. I am like yourself although not as immobile I have a great deal of back and pelvic pain going on and now these twinges/spasms stabbing pains that really feel like before yet not quite as intense.

My bowel is still giving me issues and I'm hoping like others have said my pain may subside better by around 6 months as at 3 months the bowel is still traumatised by the shave. I know I was am extra hour he literally said to me on the table I woke up and asked him while still a bit high "well what was the situation like" "Shocking" he replied with a follow up the next day re my adhesions and bits such to my pelvic wall etc, Adenomyosis etc.

I know I wasn't strengthening my core til 5 months post c section and I rushed a bit at 12 weeks possibly doing too much and brought on twinges etc? I'm kind of in denial my problems may be still around. I had bleeds from hell it was worth what I paid to get it taken away (my wait was a further 18plus in my 9 months spent on NHS)

I'm up and down like a yoyo though with these thoughts rattling around that I'm stuck sore and practically in a sedentary lifestyle when I desire to be so active like before. It's depressing isn't it. I don't want more laparoscopies more holes more scars I'm honestly done with ops now if the f@cker grows back it grows back regardless and I will wait on a drug or potion that can fire fight every last cell.

I can't go through this again my stomach looks like a join the dots puzzle with surgery scars.

My surgeon was a specialist here hes been taking away Endometriosis for 10plus years and believes in it and that it plus Adenomyosis cause extreme pain for women. He so wants me to be a success story though he made me aware to try and strip my bowel of every last cell would be to highly rush puncturing the bowel. These cells are there they live on and who knows how fast they grow.

It's a unknown vortex of women's problems shit that hasn't been chartered enough worldwide to have all the answers.

It's a bollux!

Good luck to you. Keep me updated pls.

Helly

X.

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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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How are you now jennies ?

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