Endometriosis UK
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One year post hysterectomy - pain is back!

Hi Everyone, Looking too see if anyone else has experienced post hysterectomy pains and if so what treatment did you get? I was diagnosed with both endo and adeno and had a full hysterectomy just over a year ago. I've been doing really well, but over the last 3-4 weeks I've started getting a familiar burning/stabbing pain on my lower RHS again. I'm absolutely gutted as I've been doing so well. I will make an appt at the doctors, but I'm not hopeful as everything is always such a mission with endo and getting treatment. I have to say that I'm absolutely gutted and I have no idea how I can be helped now. I'm thinking it may be an adhesion or some endo cells left behind? Either way I just don't know what to do and I'm really upset as I thought I had my life back :-((

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Hi, it can come back, I had three years bliss before mine came back. Ask to be referred to your regional tertiary Care Endo specialist Centre, because general gynaecology won't have the expertise required.Good Luck!

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Hi, I'm 7 years post op and each year has gradually got worse. Until now all I've seen are general gynaecologists and they've changed my hrt a few times, that's it! But next Wednesday I've got an appointment at last to see a specialist gynaecologist at an endometriosis centre. I'll let you know the outcome. It's my last hope as don't know what else I can do. Have you been taking hrt since your op? Xx

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Hi, thanks yes I have been taking HRT as I had everything removed and went straight into menopause with awful side effects.

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Same as me 😞 What are you taking now? And what have you tried? I'm on patches now x

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Hi ,I had everything removed ( hysto and both ovaries) 14 years ago and yes still have exactly the same endo pain as I did before the op, I wish I was told that it can come back even after everything has been removed. I have been on Livial tablets one a day and they help with the hot flushes etc but DO NOT help with the pain unfortunately, I have just come off the Livial as my GP says to have a break for a while and see if my menopause has finishes ?? So sick of gynos ( only ever seen males) treating me as though I'm absolutely crazy and that the pain is in my head and this constant "period pain" which feels like crushed glass and bloating. so far I haven't found any pain relief that works and you can still function with. Help please !!!

PS. I'm in Australia

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Just on 1mg estradiol once a day. Think I'm going to ask to be referred to a endometriosis pain management specialist. I've looked and there is one about 20 miles from me. I worried my doctor and consultant will just brush me off. I need to see someone who understands!

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Never tried patches, do you think they are better?

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Hi I feel your pain too had full hysterectomy in Feb 2017 it's now sept and the pain is back when had hysterectomy cyst on right ovary was attached to my kidney and they couldn't guarantee all cells were removed had ultrasound few weeks ago n the cyst has grown on my kidney it's now 6cm however they saying it's not related to endo I know it is and am desperately trying to get referred we know our own body's and the signs pain of endo better than any doctors xx

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Hi. I too have similar 9 months post total hysterectomy. This thread was from a while ago, but would be interested to hear if you have got anywhere. Thanks!

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