The Stages of Endometriosis

If you’ve just been diagnosed with endometriosis, you may have been given a number along with it.  That’s because, broadly speaking, endometriosis can be categorised into four different stages, conveniently if unimaginatively labelled Stages 1 – 4.  It’s a system first used in America that is now recognised internationally.

I’ll explain what these stages are in just a sec, but first I want to highlight the most important thing about these stages –  THEY ARE NOT AN INDICATOR OF HOW BAD YOUR SYMPTOMS ARE.  I’m normally the first to complain about doctors dismissing you, but if a doctor says that you only have Stage One endometriosis don’t see that as them saying your endometriosis isn’t bad.  I only have Stage 2 confirmed and Stage 3 suspected, but my pain can be absolutely crippling.  Others may have Stage 4 and have practically no symptoms.  Someone with only Stage One may be in far worse pain than me.  Endometriosis is a truly wacky disease that makes no sense whatsoever, but it is really important to remember that you should not measure your pain by what stage you are diagnosed as having.

What stage your endometriosis is at refers to two things:- the spread of the lesions over your organs, and the depth those lesions are embedded to.  It can also include the severity of any scarring or adhesion, both of which can cause additional pain without actually being endometriosis in the strictest sense.

A quick word on the lingo I’m going to use below:-

  • Adhesions – where two organs become stuck together.  This usually happens because there are rough patches on the organs so they can’t slide against each other like they should.  This is common after surgery or where something (like endo) changes the texture of the organs).
  • Scars – when bits of endometriosis are removed or die back, they can leave behind scarring.  This is another thing that can lead to adhesions because scars roughen the surfaces of the organs.
  • Lesions – the little lumps of endo.  I think of them almost like pimples, with a visible head and a body that may be either shallowly or deeply embedded into the lining of whatever they are on.

Stage One (aka minimal) endometriosis is characterised by little bits of endometriosis here and there with no or very few scars and adhesions.  Generally endometriosis at this stage is confined to only a few areas, usually only in the pelvic cavity rather than on other organs.  The endometriosis lesions are generally only shallowly embedded at this stage.

Stage Two (aka mild) endometriosis starts to get a little more dramatic, with endometriosis lesions spread over a wider area, including the ovaries and the back of the uterus rather than just the upper portion.  The lesions are still generally only shallowly embedded.  There may be some adhesions but generally all the organs will be moving relatively freely.

Stage Three (aka moderate) endometriosis takes a turn for the worse, with multiple bits of endometriosis spread over a wide variety of organs.  The lesions can be deeply embedded in the lining of the pelvic cavity and the organs, and there may be significant adhesions and scarring.

At Stage Four (aka severe), the organs may be warped and distended by the endometriosis and the fallopian tubes may be severely impacted.  Organs may be stuck together at multiple points or twisted.  The lesions are deeply embedded and running amok over whatever they can latch their evil little hands onto.  Organs may be seriously scarred.

Knowing what stage you are at can be handy purely to know where the endometriosis might be and what your organs might be looking like.  Mine are largely where they should be, moving against each other smoothly, and the right shape.  My last surgeon showed me some comparative pictures of some endometriosis at Stage 4 where the ovary was totally adhered the bowel and twisted around on itself.  It was messy.  There were really visible lesions everywhere and the whole thing just looked awful.  My insides looked quite neat and tidy by comparison.

However, it is important that you don’t define your endometriosis purely by its stage.  As I said above, the stage you are at is absolutely no indicator of the symptoms you may have or the level of pain you will endure.  Further, you may have endometriosis that doesn’t fit neatly into any category.  For example, mine is probably on my bowel as well as my uterus and my lesions are apparently relatively deep, both of which would indicate that I have Stage Four endometriosis.  However, I have no adhesions, the lesions are tiny and barely visible, and the stuff on my uterus is confined to a relatively small area, all of which are Stage Two characteristics.  These stages are not the be all and end all of endometriosis description.

Hopefully that goes some way to demystifying what these stages are (if, indeed, you were mystified by it).  What stage do you have?  Did your doctor explain to you what that meant?  Did they explain to you that it had no bearing on your symptoms and pain?  Let me know in the comments.