Pain again!


I'm four weeks post laparoscopic ovary and tube removal due to stage four severe endo. I still have endo on both uterosacral ligaments and my womb is hitched up pressing on the rectum. HRT going great and was feeling fab until today - 28 days exactly since last pain! My consultant thought removal of ovaries would stop pain as decapetyl injection worked for 10 months. Sex also still sore. I really don't fancy the next step if a full hysterectomy and wonder if anyone else has had a similar situation?

My positivity has been severely zapped today 😢😢 xx

7 Replies

  • Hi - unfortunately removal of the ovaries doesn't cure endo as it can produce its own oestrogen within its own cells, and neither will a hysterectomy. Oestrogen replacement can feed it as well. The endo has to be removed (excised) and when you have endo on the uterosacral ligament it is rectovaginal endo in a place called the Pouch of Douglas which must only be treated by a specialist in endo. Click on my name and have a look at my post on POD endo.

    If you had both ovaries removed it would be very unusual to leave the uterus and I guess this has been done because the surgery would have been beyond the skill of the surgeon. So you will be on combined HRT. Can you say what dose/form it is and what was your oestrogen level when you had your blood tested - you should have had at least one test in 10 months?

    You need to be seen by a highly skilled specialist. Where in the UK are you?

  • Hi - thanks for your reply lindle. I'm in Scotland. Very pleased with my consultant as I have a great Relationship with her and trust her judgment completely. Only got my endo diagnosis after lap so still all sinking in. My HRT is a combined low dose 2mg elleste duet xx

  • Ultimately you should be in control of your treatment and if you are happy with your consultant then that is for you to choose. But you have 2 centres in Scotland that have been set up to try and ensure that your kind of endo is dealt with correctly according to European guidelines and she does not appear to be working to those guidelines. Skilled surgeons would always aim to retain organs and remove disease not the other way around. While ever you have endo still in your pelvis, especially severe stage 4, it is likely to continue to grow with or without your uterus and HRT will feed it. 2mg Elleste is the higher of the two doses available and if she has not done an oestradiol blood test yet then she is not looking after you as it is vital that you know how much is circulating in your system. Post menopausal endo fed by HRT is documented as very aggressive and I know this to my cost as my severe stage 4 endo only arose after a hysterectomy and removal of both ovaries as it was fed by HRT. I finally had the thorough excision that you should be having at age 55.

    The ESHRE guidelines that cover Scotland say at 2.4.5:

    'The GDG recommends that clinicians refer women with suspected or

    diagnosed deep endometriosis to a centre of expertise that offers all

    available treatments in a multidisciplinary context.'

    You can see the list of specialists here:

    It would be very unusual to retain the uterus after both ovaries are removed and assume you want to consider IVF, but the chances of success would be low with untreated stage 4 disease and the fixed uterus could cause all sorts of complications. I strongly suggest that you discuss your treatment with your GP in the light of this evidence before consenting to a hysterectomy unless full excision is proposed at the same time by a highly skilled surgical team. x

  • Thanks again for all the info. I made the choice not to have any children a long time ago so this is not an issue for me thankfully. When I had the decapeptyl injections shutting down the ovaries, this worked so well for me and I was completely pain free for 10 months - hence the decision to remove the ovaries and tubes. I'll study the documents on the links before my next consultation with her. Many many thanks again - much appreciated x

  • Hi - when you had the decapeptyl did you have add back HRT as that would have been the only way to know whether you would be pain free since you had to have HRT after you had the ovaries removed and so would have had to do the same test with the injections if you see what I mean. In any event you really do need someone to excise all your endo. x

  • Yes, I had add back HRT called Livial. I'm more confused now as I thought surgery would have made things better :( x

  • Hi - one of the main problems with rectovaginal endo is that a lot of the pain is usually from adhesions pulling on pelvic structures and/or pain from aggravated nerves. Uterosacral endo is especially likely to cause this sort of pain as these sources of pain don't respond to oestrogen and so would not respond to withdrawal of oestrogen. There is likely to be endo involved as well and the injections will probably have had an effect on reducing inflammation from that. Why you were free for 10 months I'm not sure but perhaps it has got worse since and you now have adhesions and/or nerve pain kicking in. This might be useful:

    Try not to be confused as your situation would be well understood by a specialist in endo so learn all you can so you can now take an active part in the decision making. x

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