Hysterectomy is it worth it?

Posted , 5 users are following.

I am 29 and was diagnosed with endo in December after suffering significantly since about 2009 and was extremely sick in the 18 months leading up to diagnosis.

In december i had the endo cleaned up and was given a mirena.

for 2 months all my pain, bowel, bladder and bleeding issues were gone. It was amazing, but they have started to return.

my gyno had suggested a hysterectomy if my symptoms were not controlled with the mirena.

the thought of being free of all the issues sounds amazing but I also no that it doesnt always work.

is it worth it? Did you get relief? What questions do i need to ask?

i am dont having children so that is not an issue

 

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9 Replies

  • Posted

    One way of finding out would be to have the prostap injection. It induces menopause temporarily. My gynae specialist offered it to me but I'm terrified of needles (wimp I know lol) have a chat with gynae and see if it may be suitable for you x
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    • Posted

      Hi thanks for the reply.

      I am guessing this is something that I would have needed to have done immediately following a lap to truely know if it could work? My understanding that where the problem lies with a hysto is that if the endo isnt all removed at the same time then it will more than likely continue to cause problems, particularly if HRT is involved?

      I will talk to him about it, I dont want to go through the surgery without some reasonable likelyhood of success.

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    • Posted

      It took 27 years for endo to come.back after my total hysterectomy. I was on HRT almost that whole time but had tapered down to a teensy bit every other day or so by the time endo came back when I was 54.

      I have never regretted having that total hysterectomy. I had 27 yrs out of hell, then 4 months where we thought I had diverticulitis, then had a section of colon removed. It's been 7 years since that surgery and no problems.

      Of course if both ovaries aren't removed, you'll have a regular source of hormones to feed anything that might become endo. In certain parts of the States the drinking water is contaminated with small doses of hormones from all the birth control pills eliminated in our urine. I can't help wondering if that's not contributing to the quicker return of endpoints in some places.

      Still, hell is hell and I am thankful for every day, week, year and decades I've spent outside the endo version thereof.

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    • Posted

      Thanks for the reply. I was going to have a colectomy last year my bowel symptoms were so bad. Thankfully i got a proper disgnosis before that happened.

      It is interesting that you were on hrt and managed to not have any reoccurance for so long.

      More things to consider i guess.

      I also saw your comment below about children. My gyno suggested the surgery and is more than willing to do it. I had my tubes tied during my csection so he knows that i am commited to my "i am done having children" stance.

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    • Posted

      Hi,

      I'm 39 and considering having a hysterectomy after suffering 19 years of endro.

      can I ask if you don't mind, when it came back after your hysterectomy, where was it and how did you get rid of it?

      I thought if I had the operation that it would get rid of endro for good, I'm a bit confused now.

      Many thanks

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    • Posted

      Hi Michelle

      It came back the same way it had started, with endless diarrhea and one night passing great quantities of non-hemorrhoid blood rectally. There was tremendous abdominal pain, too. My gastroenterologist was astounded that I went through 4 horrific, ER-visit events with what everyone believed to be diverticulitis. He said that the general rule was to have surgery after the 2nd event, to avoid a perfed bowel.

      Oh, well, I lived. Am still thankful for all the years without nightmare periods. Also, for me, when I had my total hysterectomy doc said I wouldn't have lived past 32 with all my organs as I was right on the brink of cancer. Ovaries, uterus, cervix, take your pick as to which would've developed cancer first. I am thankful also that I trusted my gut feeling that it was time to take everything out and had refused to let either doc, friends or my 2d mom talk me out of that surgery.

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  • Posted

    Hi I am 23 and was diagnosed with endo in December and started having the prostap injections in February and it's the best thing ever. I have bad hours every now and again rather than bad days or weeks. I was told to have a hysterectomy and this was my only chance at a normal life by one doctor and since have been told by 3 different gynaecologist that I shouldn't even consider it at my age especially when there is the injection. I would strongly suggest you try the prostap injection.
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    • Posted

      You may want to ask those docs if children aren't the reason they say you shouldn't consider hysterectomy - well, children and your youth. Docs, especially OBs, tend to believe that all women desperately desire to bear children. Thus anyone who's under 40 and childless often has to fight hard for a total hysterectomy.
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    • Posted

      Thanks for the tip about the injections. I have been put on Goserelin injections. I can only be on them for 6 months but the theory is that if i get relief from the injections then i should with a hystorrctomy.

      Having my first dose next week. Bring on the hot flushes!

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