How do I know what stage my endo is?

I notice lots of you talk about stages, I had my lap 8 weeks ago and had my follow up 3 weeks ago. I was shown photos, results of the histology, discussed my recovery and next steps. At no point was the stage of my endo mentioned. If doesn't say in any of my letters including one to my GP.

I have tried to Google it but I am confused !!

8 Replies

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  • I don't think it is overly used tbh, and it depends on the location and type of endo,

    I found this

    What are the different stages of endometriosis?

    A staging system has been developed by the American Society of Reproductive Medicine (formerly the American Fertility Society). The stages are classified according to the following:

    Stage

    Level of severity

    Stage I

    Minimal

    Stage II

    Mild

    Stage III

    Moderate

    Stage IV

    Severe

    The stage of endometriosis is based on the location, amount, depth, and size of the endometrial implants. Specific criteria include:

    The extent of the spread of the implants

    The involvement of pelvic structures in the disease

    The extent of pelvic adhesions

    The blockage of the fallopian tubes

    The stage of the endometriosis does not necessarily reflect the level of pain experienced, risk of infertility, or symptoms present. For example, it is possible for a woman in Stage I to be in tremendous pain, while a woman in Stage IV may be asymptomatic. In addition, women who receive treatment during the first two stages of the disease have the greatest chance of regaining their ability to become pregnant following treatment.

    I hope this helps, I've seen a box table before which was detailed, but can't find it.

    So I hope this helps

  • Most doctors do not recognize "stages" of endometriosis. Some people use it because they consider it helpful in describing the symptoms they have. However it is really not used because endo symptoms are all VERY different between different people, and it really is a spectrum...rather than a stage.

    Talking about stages can be dangerous, because it compares people to one another (as if some people have it "worse" which is cruel), and frankly endometriosis is just not that simple.

    "Stages" are not really recognized by doctors because they are not used officially. They are not based on research or anything, they're just meant to be helpful guidelines--NOT diagnoses. Endometriosis is endometriosis--and they're all different and complicated.

    However, below are those "stage" guidelines.

    Stage I: Minimal

    In minimal endometriosis, there are small lesions, or wounds, and shallow endometrial implants on your ovary. There may also be inflammation in or around your pelvic cavity.

    Stage 2: Mild

    Mild endometriosis involves light lesions and shallow implants on an ovary and the pelvic lining.

    Stage 3: Moderate

    Moderate endometriosis involves deep implants on your ovary and pelvic lining. There can also be more lesions.

    Stage 4: Severe

    The most severe stage of endometriosis involves deep implants on your pelvic lining and ovaries. There may also be lesions on your fallopian tubes and bowels.

  • I would have thought this should be on your discharge note (I guess it depends on surgeon). Mine wrote it on my discharge note after my 1st lap and I went crazy googling away.

    If you really want to know, I think you can always ask the surgeon that performed the lap - I hope this helps x

    P.S.

    Stage 4 was what was written on my note by the way.

  • I'm curious more than anything, I have checked all my paperwork but nothing on there says about the stage! My next review is in 4 months, so perhaps il have to be patient! 😊

  • Hi - the stage will denote the severity in terms of depth of disease and level of obliteration of the cul de sac and in turn the level of expertise needed to treat. In an ideal world we would all go to a specialist centre for treatment but the NHS contract for England requires that stage 3 and 4 cases must only be dealt with in a centre with surgeons who have done advanced excision training. The system isn't perfect as it fails to recognise endo in places other than the reproductive organs but it is important in identifying those who should be treated in a centre. A lot of damage can be done in the hands of unskilled general gynaecologists trying to treat severe disease. The chart is figure 2 of the following:

    asrm.org/BOOKLET_Endometrio...

    I would suggest you obtain a copy of the surgical report sent to your GP as it must say what they have done as the procedure must be coded to your records. There will be a small charge but not too much.

  • Thank you Lindle, I have a copy of all the communication so I know exactly what was done, it just doesn't mention the stage anywhere in the documents, it's only since I have read more on here I realised at no point was the stage mentioned. I was treated privately so not sure if it works differently! Thanks for the article I will have a read 😊

  • If you want to private message me with what was done we can try and establish the severity. x

  • Thank you thats really kind of you, I will get the letter out after work tomorrow and drop you a line x

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