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Endometriosis UK
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Everyone says it’l be fine

Due for my total hysterectomy and endometriosis excision my first operation for this. And all based on symptoms and no real proof. An expensive operation and six days away from home. I stress about it all I’ve had to find out all my info and support online and through here. Have had no local support. I’m writing this all the way from Nz. I do not have any support here for this. My surgeon is so sure of himself that this will make things better. But of course he would. I have been up and down on a emotional roller coaster in wetter it is the right thing to do. Seeing my husband and my children upset that I havnt been the “old me” is my reason why I am giving in to having the operation. However i know in my heart that it isn’t a cure that it isn’t just that easy and that I will have a lifetime of this. I hope to be one of the lucky ones as we all do. I have had so much I’ve lived to do in my life especially the last few years and now I know even after the operation it could still be something I will have to permanently give up. That my life will be about constant pain relief hot water bottles eat rest and more rest while I watch out the window mourning for my life I will no longer have. And one where I have let my children down. I know it is my choice for the operation and I have made it I just pray for my kids that it is worth it

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Why has your surgeon gone straight for recommending hysterectomy without yet having a laparascopic diagnosis, which is the gold standard? Have you been diagnosed with adeno?

Has he been honest that it does not cure endo, that some forms of endo are hormone resistant and that you could potentially continue to have symptoms? Has he made the other longer term health risks of TAH clear to you?

If not then I would be having serious thoughts about continuing with it, at least until you actually know what severity you are dealing with. Pain levels and severity of the disease don't always coincide.

Hysterectomy is life changing and irrevocable, please only take the step when you are confident it's the right decision and good and ready.

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What is TAH?

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Total Abdominal Hysterectomy

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Yea I’ve been diagnosed with adeno

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Hi I also have adenomyosis (& stage 4 endo), am also waiting for a hysterectomy (in UK). Between pain and the painkillers it sometimes feels like there's not much of the old me left, so I recognise a lot of your feelings.

I have done a fair amount of reading and know that there could still be pain afterward but so many women say that they do not regret the decision and have a new lease of life afterward. Scary decision though!

The hyster sisters website (US) is good for info and (UK) hysterectomy association site.

Good luck and best wishes x

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