Advice on Hysterectomy please

I have endo in pouch of douglas, an endometrioma on right ovary, scaring on the sacral ligament, adhesions on large bowel & abdominal wall, I am in lots of pain dispite being on morphine, Zoladex injections 3 monthly, livial, mebeverine I am pretty much house bound & as you can imagine completely fed up

I would love some advice on hysterectomy, has anyone had endo come back after hysterectomy? I would be having both ovaries taken aswell

Would love some advice before I make a decision :-)

5 Replies

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  • i've been advised to a have a full hysterectomy for similar reasons to yours, upon my research i have found its really mixed outcomes. a lot of women say they have all the pain or some of it is back within 2 years or so, the ones who say its been brilliant and are pain free seem to be less than two years. have a read through this page, and the rest of the site

    endometriosis-consultant.co...

    it makes for some interesting reading. i think i've been told a hysterectomy becasue of my situation which is i have kids and i'm 41, i dont mind the hyster as long as they properly remove the endo, and i'd rather leave my ovaries or at least the good one as i don't fancy instant menopause yet xx

  • Sorry for late reply lol but lives been very up & down at the mo as I'm having to fight my ESA claim which has done me no favors with the stress as you can imagine, I too have kids I have 3 & do not want anymore. I have been advised to have the full hyster with removal of both ovaries but now my consultant is reluctant to do it as I'm still in my 30's its so frustrating women have it done in their 30's all the time & I know quite a few who have hrt from 30 something & have had no problems. I will have a read of that page.

    Thanks & hope you are well soon xx

  • Hi Vickie

    I had a hyst in Jan 2011 so almost two and half years ago now. I felt fine during the first six months of recovering post-op then my remaining ovary started causing me pain. When this level of pain increased to the point of affecting me on a day to day basis I spoke to my consultant. I ended up having that ovary removed in October 2011 and told myself I was fit and healthy again-mainly because I had no womb or ovaries left to trouble me!

    However in June 2012 I decided to stop kidding myself and mentioned the ongoing pain to my new GP as by then I had moved house away from my previous consultant. He referred me to a new local hospital and after scans and blood tests etc I had another lap in Dec 2012. It was then discovered I still had endometriosis on one side and ovarian remnant tissue on the other. All of this was excised during the lap.

    I am now 5 months post-op and feeling better. However my hormone levels are still high for someone who is post-hyst and as a trial measure I have re-started Prostap injections as I had a good response to them prior to my hyst.

    The pain has almost disappeared and as a result I am happy to stay on the injections with my consultants blessing until I would have reached the menopause naturally. I must add that I havent taken HRT in any form yet I was one of the unlucky ones for whom enometriosis just wouldn't leave alone.I wouldn't like to think how the endometriosis would have been had I taken HRT too.

    Having a hysterectomy is a hard decision to make as each woman will respond differently to the operation and each surgeon's skills are different too. If you have any other questions I will try my best to answer them.

    Good luck with what you decide.

    Caroline, x

  • Hi ladies

    Sorry to here you in so much pain x i wish i could tell you a hysterectomy will take it away and for the first few months it feels like it has. i had a subtotal abdominal hysterectomy done in march 2012 they left my cervix as it was so stuck to my bowel, i am now awaiting another majour op to remove cervix and have a bowel resection with a possable iliostomy. i am so upset that i have had to go through this big op as i feel if they had removed it the 1st time i may not be in this situation.

    I would say if you are thinking a hysterectomy will end it all you are wrong, sorry to be so blunt but i am trying to help you, dont give up on having kids or just taking it all out cos if you have it in other places other than womb and ovaries removing them wont stop it growing in the other parts. we all know there is no way of compleatly removing endo so i think the best we can hope for is remove as much as posible so we can at least live our lifes better.

    sorry we all have to suffer this nasty disease and i as much as the rest of you wish it would just go away but we know it wont.

    I wish you all the best of luck with whatever you decide to do but please make sure you are doing it for the right reasons not like me.

    Debbie x

  • Thanks you for the replies, I have 3 children & don't want anymore so I don't have to worry about that thankfully I had my children before the endo took over. My consultant told me that if I have everything taken out I would have to have both ovaries taken at the same time as that way they will not be able to produce the hormone that feeds the endo but since this I have had a falling out with my near useless consultant & I am now looking for a new one.

    I have to admit that I am hoping that if I remove everything then it would get rid of the endo but this is why I want to hear other girls stories first before I make a final decision.

    & hugs to you all xxxx

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