Long term problem with endometriosis

Was told I had endometriosis years ago, it came back more times than I can remember had lots of pain ...have 4 laparoscopy then ending up having a full hysterectomy...now leaving me when more pain from the operations I have done due to the scar tissue ...now going to the pain team ..as now they have said there nothing that can be done for me only to have pain relief..also no one has even checked to see if the endometriosis is still there ...not sure what to do next

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9 Replies

  • Have you still got your ovaries?

  • No dont have my ovaries had a full hysterectomy done years old

  • Have a read of this and the comments underneath from a certain accredited endo consultant (we cannot mention by name), and perhaps you may want to ask your GP to refer you to said surgeon or others who use his techniques for resolving pains still existing after a hysterectomy.


    the list of accredited endo centres in the uk is bsge.org.uk/ec-BSGE-accredi...

    I believe he may only do this surgery privately rather than on the nhs, but if it means you end up pain free

    then it could prove well worth the investment. Certainly worth making enquiries.

  • If you still have your ovaries, try something like zoladex to see if this eradicates your symptoms. If so, the problem is likely to still be endo. If not, it may be endo or it may be nerve damage etc.

    The article in Impatient's comment has lots of excellent info but it does contradict itself in some ways - it says that the problems caused by hysts are often down to scar tissue or endo left behind, then it says that they know a hyst can work if a GNRH analogue works. Firstly, the resulting pain from a hyst is down to the effects of the surgery, the zoladex etc won't prove anything. Secondly, this obviously only applies if you have an oopherectomy (ovary removal) not just a hyst. I often wonder if just removing the ovaries and bit the womb would be a better option.

    Hope you find some help x

  • Hiya.....I also had a hysterectomy aged 35 six years ago and was fine for 3yrs then bang it was back except dis time it was worse dan ever before....Ive jus gone thru hell d last 2yrs and had given up hope of ever being pain free and I did a lot of research and found a top endo specialist 5miles from wer I live....Ive been attending him for 3months now and my pain has decreased by 50% so far and hes absolutely amazing,I attend him every 6wks so he can keep an eye on me and 2 see how d pain is and if d treatment is working for me(didnt realise der wer so many options after d hysterectomy)....wot im reali trying to say is dont give up hope,go back 2 ur GP and ask him to refer u onto sumone else who specialises in endometriosis after hysterectomy...d help is out der.....Best of luck x

  • I know it all been a nightmare really scar tissue from ops now sticking to other organs ..just contact hospital and they have given me the endometriosis nurse number to call so im going to give her a ring ...been going though this since I was 19 now 42 and never been told about specialist for endometriosis ....hope you can get sorted to ..and all get the pain sorted out ....x

  • am in d same boat Tracy,my bowel is stuck 2 tummy lining,my intestines r destryed....everytin sticking to something.....hope d endo nurse helped a bit.....and genuinely hope u find someone who can help u also....if u ever wanna chat or hav any questions,no matter how trivial u tink dey are,jus ask...u can send me pm anytime....best of luck and let me know how u get on xx

  • Thank you hun ...same to you to every want to chat pm me x

  • Will do Tracy xx

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