Stages of endometriosis

Hi there. I was told a year and a half ago that I had severe endometriosis which was very close to my bowels. I was never told what stage endometriosis it was and I notice on here that a lot of people have been told that. Is this something I need to know? I had an ovary removed, well supposedly, and am now being told that it hasn't all been removed and am again in constant pain like I was before my operation. Thanks

9 Replies

  • staging with numbers doesn't seem to be something that UK docs are generally doing - mine has just been described as severe. When you say it came back, do you mean the endo or the ovary?

  • I had my operation in June 2015. About 6 months later I had niggling pains and in about September 2016 I had to go back to the doctors as the pain was as bad as previously. I had a scan and the nurse asked me if I was sure my ovary was removed to which I said yes. I was then told by the consultant that my entire ovary was not removed due to my age or something!! His words!! My doctor however calls it remnants so I am very confused at the moment and the pain is getting worse

  • Are you being seen by the consultant at the moment? And are you at a bsge centre?

  • I saw a consultant in December through a place called health harmony arranged by my doctor. They gave me provera for 4 months but hasn't helped. I have a further appt next week

  • Am I right in thinking that's NHS funded outsourced care? It's not a specialist centre, it's general gynae?

    Please go back to your GP if you can and have a chat about being referred to a bsge centre instead. If they've told you the endo is severe then you should be at once of these centres.

  • Yes outsourced care who don't do surgery so will just keep fobbing me off with tablets. Problem was I never had a follow up appt after my operation I was just sent away with painkillers. I will go back to my doctor thank you

  • I was told I had stage 4 severe endo in 08.

  • There is a table that shows the different stages, but the stage doesn't always link to pain levels. I was stage 4 (said if there was a stage 5 I'd have been that), and whilst I had a lot of pain, I knew most of it was cyst and adhesion pain. Others are stage one and are in severe pain a lot. Obviously different pain thresholds come into play too.

    My endo at stage 4 was classed as very very severe and was literally everywhere in my abdomen. Fortunately it had not gone on my diaphragm, but was everywhere else!! Even after being excised at a bgse centre during my latest op (hysterectomy) it was once again everywhere.


  • Thanks for that x I think I just don't know what to do next! I have been given provera but they are not helping at all. Is there anyway that they can see the extent of it without a laparoscopy?

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