Endo recurring 12 years after hysterectomy?

Hi. I am new to this site as I haven't had any cause to stay in touch with other endo sufferers until now!! After years of suffering with endo a laparoscopy revealed that I was indeed covered in it and decided at 41 to have a total hysterectomy. I was the new put on HRT to counteract this. I have to say that after my initial recovery I then went on to have years pain free and was pleased that I had made that choice. I had my quality of life back. I am now 52 and for the past few weeks I have started to have those familiar symptoms I thought would never rear their heads again!! Has anyone else experienced similar circumstances? I am still on the HRT but am aware I should probably be thinking of reducing that in the very near future. I was told that if any tiny remains of the endo was left after surgery it could take years to grow again. Is this the case? I really would welcome any advice/help.

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  • I was only diagnosed with stage 4 endo at age 51 seven years after a hysterectomy and ovaries removed. HRT simply goes on feeding it unless the levels are very low and endo has the ability to produce its own oestrogen within its own cells without ovaries. Is it unopposed oestrogen you are on and what have your oestrogen blood test levels been all these years? You shouldn't take HRT after age 51 even without endo due to the cancer risks so your GP should have already had you off it especially with your history of endo.

    No one can say how long any residual endo will take to regrow as it depends on the stage it was at the time of surgery and the individual woman. But when a doctor knows you are taking oestrogen to replace that previously produced by the ovaries it always baffles me why they think it should stop growing.

    You need referral to an endo centre and your choices depend on where you are in the UK. Have a look at my post on the UK treatment pathway.

    I now have a Facebook support group where we have a few in your situation if you would like to join:

    facebook.com/groups/1148144...

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