How do I know what stage my endo is? - Endometriosis UK

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How do I know what stage my endo is?

Adele-84 profile image
6 Replies

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 !!

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Adele-84
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Tboag profile image
Tboag

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

virago profile image
virago

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.

me08 profile image
me08

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.

Adele-84 profile image
Adele-84 in reply to me08

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! 😊

Adele-84 profile image
Adele-84

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 😊

Adele-84 profile image
Adele-84

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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