Endometriosis UK

confused!! hysterectomy!!

i am 29. married, mother to an amazing 12yr daughter. got diagnosed with endo 2yrs ago. have had two lots of extensive key hole surgery and one laparotomy since diagnosis. strangely i have never asked or been told what stage my endo is even though i am under an endo specialist consultant. my pain is manageable because i choose now to conceal it from others and pretend with all my energy its not hurting , i have the marina coil now for 2yrs yet still bleed horrifically every month for the full 7days, have previously tried zoladex and prostap but does not alter anything.

now my next op is a hysterectomy!! 7 weeks to go. should i be happy, relieved, i know its not a cure but since my period every month is my only downfall maybe its my only solution?

i feel so lost and so angry and just incredibly confused! i am a biochemist, i know the hormone down falls, the possible future impact on my health but yet i still do not know if this is the right thing to do!

i just want someone to tell me its going to be ok. i want someone to tell me a positive story of how a hysto has improved there life, not medical facts that you get from a journal cause i already know them of reasons not to have a hysto! i am not scared to loose my womb, i am just scared it it all going to go horribly wrong :-(

i have so many questions to ask??

5 Replies

Hi, I'm also waiting for a date for a total hysterectomy, my overies are being left in, I'm 39 and my overies are healthy so my doc thinks it the best thing for me, I have endo and adenomyosis, so I no it is certainly a cure for one of them, BUT I'll still have the rndo after and hopefully it will be kept at bay, ive had it excised and he will remove anything that was left behind when doing the hysterectomy,

It's a huge desissions to make, and one only we can make by ourselves, personally I can't bloody wait for it to be gone,

Just think you more periods, yay,

Is your doc desissions to do this based on your bad periods or the endo pain, I take it you have researched regarding the fact that the endo can carry on growing after a hysterectomy, are you having your overies out? You are very young? If you are I think you will need htr to support your bones/health, and thst can also feed any endo left behind,

It's a Reall weird one isn't it, they say it's not a cure, but the results must be quite Goid otherwise would these specialist docs be foing it?

I hope you get loads of replys from people in you situation that it has worked wonders on, good luck in your furtu re and may you be endo and pain free.



Hi I suffered endo for many years, eventually diagnosed with adenomyosis and bowel implication. Being 47 with a great family I decided enough was enough and it was time to look after myself. I had laparoscopic total hysterectomy and bowel resection 8 weeks ago. I was started on HRT immediately and returned to work after 4 weeks. It is early days but I can honestly say I feel so good- no more abdo leg back bowel pain I am a new woman and feel positive. Hope my story helps

1 like

I had total hyster and oophectomy 14 weeks ago for stage 4 endo excision from bowel and bladder and adhesions now pain free and just started hrt - my op went well I was pain free almost immediately after surgery just hoping endo now stays away - good luck with everything x


thank you so much for each response, i find this site to be my little safe haven full off courageous women. i am young for a hysterectomy, its not been easy to get my head round it and i doubt i will untill its done. when i last spoke to my consultant, he was hoping that this op would be done key hole (his speciality) and that he hopes to keep at least keep one ovary, as to which one depends on which one looks the best once hes in there as niether are particularly great. i have endo on the bowel and bladder also, which was excised on my last op. there is also suspected adeno hence the reason to pursue the hysto.

i am worried about HRT as i was put on a low dosage when i was on prostap injections and didnt not take to kindly to it. i am also worried about prolaspes. do they remove your cervix as well or can you keep hold of that? i have read that by keeping your cervix can help by acting like scaffolding for everything else above it. does anyone know if this is true? i have also read about high rate post op infections due to the removal of the uterus through the vagina. i am so wanting to remain positive but stuppidly keep reading about the negative points and then talk myself out of it yet i know i am will go through with it because just like everyone else, we put trust in our doctors decisions. real life stories gives me strength and clarity. strength is what we all need. thank you all very much for listening xx


Hi live life I'm in the same position as you

I have endo and adeno, am 33, currently on prostap, go back in June to discuss hyster

I'm scared too, would be nice to hear some stories of how people have felt after their hyster and if they have hrt etc

I'm struggling to deal with being put into menopause at 32 and having my womb removed at 33, I'm not ready I'm too young but the pain is so intense it's ruining my life and I'm merely a spectator in my own life just existing waiting to live again!

I'm scared of how I will feel with no womb, what will happen to my body, my hormones, my sex life, my figure, early menopause etc etc there's so much going on in my head but at the same time I can't wait to get rid of this pain and off all the tablets! And be happy again!

I'm also scared endo will keep coming back but just got to stay positive I guess




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