Endometriosis UK
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Hysterectomy or not!

I had a lap 3 yrs ago when I was diagnosed with Endo, was told they had removed a large cyst and everything was sticky, and would never have children, put on the pill and discharged. Since then I have had bouts of terrible pain bleed more than not and been back and for the gp. In April I managed to get referred to a bsge consultant, I have had scans rectal scans and home now from having 2nd lap. I have been told ovaries are stuck behind the womb which are stuck to the bowls and pushing upwards her words " a mess" they have tried to separate the ovaries but everything is badly damaged they have suggested a hysterectomy and removal of bowls with temporary stoma. I know hysterectomy is not the answer but if everything is that messed up what else is there? Thanks for any advice and hope u are all well xx

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What is your instinct? Do you feel you can accept a hysterectomy? I have a similar situation and initially I couldn't stand the thought of a hysterectomy. I got a more conservative surgery trying to preserve everything. I think that might have been unrealistic for my case. It's six months later and pain is still there. I've been scheduled for a hysterectomy in 2 weeks. I'm really looking forward to the possibility of less pain and no bleeding or cramps.

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There's a wondeful organisation called The Hysterectomy Association ( thehysterectomy-association... There is a lot of information, personal stories and practical advice. Linda Parkinson Hardman sends out regular e-mails and updates - especially in conjunction with the procedure itself, which are very helpful and supportive.

My personal story is that prostrap in the end was the only thing that helped -against 'mild endo' with severe, life altering pain and inflammation. For me the hysterectomy was a revellation although it took six months + for things to feel great again. But i was nearly fifty with only 6-7 years left until menopause (going by family pattern).

So my personal story is positive - there are other stories out there. Hope you find the strength to research all the side effects a hysterectomy will bring. And as a an endo-sister we have to be very careful with HRT (i don't take it as i even react to naturally occuring phytoestrogens in soya, peanuts and linseed for ex).

I had the hysterectomy carried out at a bsge centre in the northwest. I have only praise for their efficacy, lovely manner and professionalism. But don't expect a lot of follow up support - find out about things beforehand and ask your GP. If you have a good relationship with your GP i would book a session with her/him to ask 1) your health in general and longterm side effects of your current medications and state of health i.e. especially if you stay as you are and 2) their experience of hysterectomy aftercare and side effects. This would arm you with more information and questions to ask your consultant /specialists. And of course the hysterectomy isn't a cure to endo itself - they still also have to make sure to cut out all endo detected around the pelvic area. Your surgery sounds complicated, I hope you get a lot of advice whatever you choose to do.

Hope things will get better. Kindest regards, take care

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