Endometriosis-Hysterectomy yes or no?

Hi all,I am 29 and I have suffered with endometriosis and cyst in the ovaries for going on 10 years. I have had 3 ops the last one having to have part of my bowel removed due to the disease. It is over a year later and the pain is back. I am seriously considering an total hysterectomy and would like some opinions please. I already have a child and her seeing me ill and pain is starting to have an effect on her xxx

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  • Two situations can happen with endo and removing organs your you were told was the problem.

    Most likely you were also told that if you have the operation it will take away all your pain.

    If you've had your babies they will say " you know you are done having babies so why don't we remove it all and get rid of that pain once and for all.

    I'm willing to bet sow have been told that .

    If you kept an ovary then its stimulating your body and fragments of endo they said they got but didn't , pain will continue.

    They will look at you as if your crazy !!!

    There is no reason to have pain we took it all out .

    You may be a lucky one and will be told to see a shrink cause it's all in your head

    THEY(docs) will make it sound as if tut have not heard of that ..

    LIE

    If you had ovaries out to then you may have been put on HRT and those hormones will kick start iip some endo agsin plus now you have a lot of adhesions .

    Adhesions are no small thing .

    They are not just a bit of scaring needed to heal.

    Adhesions can be so serious that it can tangle all things around it plus endo loves adhesions . It thrives .

    So don't believe they got it all they did not

    Don't think it's in your head that's not the part it's in

    Don't believe that a surgery like that will be an end to pain.

    Having said that

    There are some lucky ones that it really helped .who can blame a person for wanting all the crappy pieces that hurt out

    But do your research girls.

    I actually , and this was way back , had a dr who actually did say

    " even after that surgery you can have pain"

    So I chose not to

    I did not know why but now I do

    If your having Similar pain as before I'll bet you it's not just healing .

    I have read where some docs advise women to wait six months before going on hormones so the bit that could be there can die

    I do not know if that is true or not

    I also chose not to go on hormones

    I mean my periods had stopped no way was I going to take a chance and feel that pain again

    These are very personal choices .

    You do what you can with what you have if you take a wrong turn its not your fault .

    There is a lot on the net that talks about navy of stories

    And though you can't believe all on the net , like FB there is a lot that's true

    If you already had the surgery still go to the endo specialist to see if you can get the pain stopped

    Shelly92555@yahoo.com

    If you want to talk pm me

  • Hi hunny, I had a hysterectomy last July after a laparoscopy in march diagnosed endo and adenomyosis,

    Hysterectomy us a cure for adenomyosis,

    They supposedly excised all my endo in the march laparoscopy,

    I'm still not well and in pain , I'm due another laparoscopy next week in a bsge centre with a specialist, he will remove overies and hunt for any missed endo,

    Are you under a bsge specialist centre?????

    X

  • Hi I was seeing a specialist at the hospital he was one of the best in endometriosis and made me feel like I wasn't insane. He did warn me that the pain and diesease could come back but he has now retired and I'm worried about seeing someone new. I never knew about BSGE centres can you get referred or are they a private health thing?

    C

  • Hiya, BSGE centres are NHS funded so not private, the website can tell you your nearest accredited centre xx

  • I had a hyster and Both ovaries removed in Feb2015 as had endo and adenomyosis. Unfortunately not done at BSGE centre as didn't know about them then and they left endo behind as believed it would die off! It doesn't. I'm in worse pain now than I was and fighting to get anyone to listen and believe me.

    So make sure you have a BSGE accredited surgeon and if you want it done get them to clear out all endo as they do op.

    Good luck

  • I am being seen at a bsge centre in London and am currently having to make a decision as to whether I'm ready for a hysterectomy or not. I have endo, adenomyosis and a lot of endo on the bowel, and everything is completely stuck together and pulled to the right. They've been very clear that my uterus and ovaries would have to go, as well as a full excision of all the endo on the bowel, and I would then have to take HRT for at least 10 years after the surgery to prevent osteoporosis. I'm having a laparoscopy with them in November so that they can have a good look around and plan the hysterectomy properly, so they know exactly what they're doing when the time comes.

    Their justification for doing the hysterectomy now (I'm 39) is that if they just excise the endo, the scarring will glue my uterus back to the bowel anyway, and if I reach the point a couple of years from now where I need further surgery and want a hysterectomy then, it won't be possible because further surgery to the bowel will cause too much damage. If they leave the endo, it will only get worse, again making future surgery more risky. There are also massive downsides to having the hyst and ovaries removed, so it's a no win situation really :/

    The one thing I would say (and I'm sure you know this) is that 29 is very, very young to go into menopause, even with HRT. If you can get yourself referred to a bsge centre (if you google it, there's a list of hospitals that have one, your GP can refer you once you know where you want to go and it is all NHS treatment) they are really the best people to talk to. They will be able to tell you if it's the right choice for you at the moment. They are also far more knowledgeable about drug treatments and pain management.

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