Deep tissue endometriosis

Hi endo sisters

I've recently been confirmed as having deep tissue endo. I've been put on decapeptyl (sorry if wrong spelling) injections. I'm just wondering what it means for the future with the endo. I also have ovarian cysts and they are going to take away my left tube as the endo has taken over. Lots of people talk about the different stages of endo, just wondering what mine is as nobody has said? Any advice, gratefully received.

Thank you in advance.

4 Replies

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  • Hi - It will depend on the depth and location. A score is used and depending on how the figures add up a stage is applied. The relevance of this is really to determine who should be treating you. True deep endo will be severe and automatically allocated stage 4. This must only be dealt with in a specialist endo centre accredited by the BSGE and all endo must be fully excised in so far as their skilled experts are able to do. So I assume this is where you are being treated? These injections are acknowledged as not usually effective for deep disease. Click on my name and have a look at my posts on how to find a specialist centre and on rectovaginal endo as this is usually involved with deep disease. The staging is at the link below but this is somewhat flawed as it doesn't take account of endo outside the peritoneum such is in the urinary tract (usually the bladder and/or ureters) and the rectovaginal septum that are often involved in severe disease.

    asrm.org/BOOKLET_Endometrio...

  • Hi Lindle. Thanks for your reply. My gynaecologist is in my local hospital which is not a specialist. I've only had the first injection just over a week ago. I was told it would take a fortnight to kick in but I am still in so much pain. I don't feel quite so exhausted as usual but this could be down to just a few "ok" days.

    I shall have a look later at your posts. I've got to go to work.

    Thank you for your help.

  • Where in the UK are you?

  • Taunton, south west uk.

    My nearest is southmead

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