One year on

Hi there

I had stage 4 endo. Just over a year ago I had a 7 hour op to remove it. I was lucky they removed it all and my pain has been nothing compared to previous. But I'm still struggling with painful nearly impossible bowl movements and peeing. And very painful sex. Is this normal. Is it something I just need to deal with. Also this period I have just had has been pretty painful and all my old symptoms are fully back on. Thank you for reading

9 Replies

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  • Were you treated in a BSGE centre? Where was your Endo removed from and how? Were you checked out for Endo in the bladder and bowel and at the time?

  • I was treated in a hospital in Scotland. Yes my bowel was attached to my womb and my tubes from kidneys were inflamed. All the endo was removed both my ovaries were completely covered but they took it all off them and I had a very large knot too at the top

  • Sounds like perhaps you need another referral to investigate the return of your symptsoms. It is possible for Endo to return after treatment as the underlying hormonal causes of Endo are still happening.

  • I'm still to have my post op appointment it's in December. To stop all the symptoms is a hysterectomy my only option?

  • Unfortunately this is normal, I've had surgery 4 times and also menopause and you've described exactly what I feel everyday. We think that having surgery to remove it will end our misery, but this is so far from the truth,all's we do is create scar tissue, adhesions and this contribrutes to the pain so, so much. I find some relief for a short time but guaranteed that same old pain will be back..

    VEndo is like living a daily nightmare

  • Is there anyway to stop it. I haven't got any children I'm worried that there will be scar tissue on my ovaries which will effect having them? Is this likely? I feel so naive to it. I don't feel like I have had any support from the doctors. I have no contact from them since 2 days after my op. It's was 7 hours!! That's not just everyday thing. Lol

  • There are hormonal treatments to explore though they are not a cure they can slow or inhibit it while you are still waiting to have a family but you can't conceive on them. endometriosis.org/treatments/

  • Are the hormone treatments like the pill?

  • That's why I ended up with the op as I have tried loads of different treatment of the pill and nothing stopped the symptoms.

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