There Is So Much Confusion Around the Word “Stage”
If you have ever been told that you have stage 1, stage 2, stage 3 or stage 4 endometriosis, you may have immediately wondered what that actually means.
And if you have been told that stage 4 is “the worst”, you may have assumed that someone with stage 1 or stage 2 must have a much easier experience.
But endometriosis isn’t that simple.
After more than 30 years of living with endometriosis and many years of advocating for patients, I think this is something we really need to talk about. The stages are useful, but they are very often misunderstood and, unfortunately, sometimes used to compare one woman’s suffering with another’s.
That is where the problem begins.
So What Do the Stages Actually Mean?
The most commonly used system is the revised American Society for Reproductive Medicine classification, often called the rASRM staging system. It classifies endometriosis from stage 1 through stage 4 based on findings such as the location and extent of lesions, ovarian endometriosis and adhesions observed during surgery. [1]
Stage 1 is classified as minimal disease, stage 2 as mild, stage 3 as moderate and stage 4 as severe.
But those words can be misleading if we interpret them as a simple scale of how much a person is suffering.
The staging system was developed to describe certain aspects of the disease, including its extent and distribution. It was not designed to tell us how much pain someone is experiencing, how exhausted they are, how much the disease is affecting their daily life, or how complex their individual experience will be. [2]
That distinction is incredibly important.
Stage 4 Does Not Mean “The Worst”
This is probably one of the biggest misconceptions I hear.
Stage 4 can represent extensive endometriosis. It can involve significant adhesions, ovarian endometriomas and other findings that result in a higher surgical stage.
But stage 4 does not automatically mean that the woman has the most pain.
And stage 1 does not mean that the woman has only a little pain.
Someone can have stage 1 or stage 2 disease and experience debilitating symptoms that affect work, relationships, sleep, mobility, fertility and everyday life.
Another person can have stage 4 disease and experience relatively few symptoms.
That doesn’t mean one person’s disease is real and the other’s isn’t. It means endometriosis behaves differently from person to person.
The European Society of Human Reproduction and Embryology specifically states that the staging system does not predict pain severity or surgical complexity, and that people with the same stage can have very different disease presentations. [1]
Pain and Stage Are Not the Same Thing
This is where we really need to change the conversation.
Pain is personal.
Two people can have very different pain experiences even when their surgical findings appear similar. And the amount of visible disease does not always correspond to the amount of pain someone experiences. [3]
The ESHRE guideline notes that pain severity generally does not correlate well with the extent of disease according to the widely used rASRM classification. It also explains that these staging systems are primarily designed to describe disease extent and location rather than the biological activity of the disease or the patient’s symptoms.
So when someone says, “I only have stage 1, so I shouldn’t be suffering this much,” that is not a helpful conclusion.
And when someone says, “I have stage 4, so my experience must automatically be worse than yours,” that isn’t accurate either.
There is no competition in endometriosis.
What the Stage Doesn’t Tell You
This is perhaps the most important part.
Your stage does not tell the whole story.
It does not tell us how much pain you experience. It does not tell us how much fatigue you have. It does not tell us whether you have bowel or bladder symptoms, neuropathic pain, infertility or other symptoms associated with endometriosis.
It also doesn’t capture every form of disease equally well. ESHRE notes that some forms of significant disease, including invasive disease involving areas such as the bowel, bladder and diaphragm, are not adequately represented by the traditional staging system.
And that is why I don’t believe we should ever look at a woman’s stage and think we know what her life with endometriosis looks like.
We don’t.
Dr. Jose D. Eugenio of The Center for Endometriosis Care says [4]:
I don’t care about endometriosis stages, but here’s why. One of the biggest mistakes in endometriosis care is assuming that more disease always means more symptoms. In reality, a tiny lesion in the wrong location can cause way more suffering than extensive disease somewhere else. Unless my patients ask, I don’t tell them what stage they have. A more important question is, where is or was the disease located, and what structures is it affecting? I’ve had patients with stage 1 endometriosis with way more pain than somebody with stage 4. Superficial pertineoendometriosis lesions can still trigger severe inflammation and pain. Others develop ovarian endometriomas often called chocolate cysts. This cyst can affect ovarian function, fertility and often associated with more complex disease.
Then there’s deep infiltrating endometriosis or DIE. This form extends deep beneath the surface and can involve utero-sacral ligaments, the bowel, the bladder, the ureters, the pelvic nerves, and even the diaphragm. And here’s where many people get confused. Symptoms don’t always correlate with what the imaging shows, or even the stage of the disease. Location matters way more than the size of the disease. Endometriosis may cause painful bowel movements, constipation, diarrhea, bloating, or symptoms that look like IBS. Bladder endometriosis can mimic recurrent UTIs, urinary urgency, frequency, or bladder spasms. And let’s not even talk about diaphragmatic endo at this time. If you’ve seen me in the past, you know that we take our time discussing your sonogram and your MRI, and you already know about the bowel prep. To me, if my patients know where endometriosis may be located before surgery, it helps us have a clear surgical plan that includes long-term treatment decisions.
So instead of asking how bad is my endometriosis, a better question may be, where do you think my endo is and how does that explain my own symptoms? So share this with somebody who’s been told their symptoms don’t match their scans. Also, share with somebody that got poked and prodded but nobody sat down to explain their imaging
What About Deep Endometriosis?
This is another area where terminology can become confusing.
Deep endometriosis refers to a particular type of disease based on how the lesions involve tissues. It is not simply another way of saying “stage 4.”
A person can have deep endometriosis without automatically being described as stage 4, because the rASRM stage and the description of deep disease are measuring different aspects of the condition.
This is one of the reasons why endometriosis cannot always be reduced to one number.
The disease has different forms, different locations and different effects on different people.
And Where Does Adenomyosis Fit?
This is also important because adenomyosis is often mixed into conversations about endometriosis.
Adenomyosis and endometriosis are different conditions, although they can occur together.
The four-stage ASRM endometriosis classification is not a staging system for adenomyosis. So if someone has both conditions, their endometriosis stage does not tell us how extensive their adenomyosis is.
Again, one number cannot describe everything happening in someone’s body.
So Why Do We Have Stages at All?
This doesn’t mean the stages are useless.
They do have a purpose.
They give clinicians a standardized way of documenting certain findings and can help with communication and research. They can also provide useful information about the extent of disease found during surgery. [5]
The problem comes when we take that information and turn it into a measurement of someone’s suffering.
A stage is a description.
It is not a judgement.
It is not a measurement of someone’s pain.
And it certainly isn’t a measurement of someone’s strength.
We Need to Stop Comparing Women’s Experiences
I think this is where we need to be especially careful as a community.
There can be an unfortunate hierarchy around endometriosis where someone with stage 4 feels that they have the right to say their experience is worse, while someone with stage 1 or 2 may feel that they have no right to describe their pain as severe.
That needs to stop.
The woman who has stage 1 and cannot get through a day without severe pain deserves to be heard.
The woman with stage 4 who has extensive disease deserves to be heard.
The woman who has had multiple surgeries deserves to be heard.
The woman who has endometriosis affecting her bowel or bladder deserves to be heard.
The woman who has very little visible disease but is living with significant symptoms deserves to be heard.
We do not need to compare suffering to validate it.
Your Stage Is Part of Your Story, Not the Whole Story
After more than three decades of living with this disease, I have learned that endometriosis cannot be reduced to a number on a surgical report.
There is the physical disease, but there is also the pain, the fatigue, the uncertainty, the emotional impact, the disruption to work and relationships, the effect on fertility for some women, the financial burden and the countless decisions that have to be made around a condition that can be unpredictable.
Those things matter too.
So yes, know your stage.
Ask what was found during surgery.
Understand what your diagnosis means.
Ask questions.
But don’t allow a number to define your experience.
And don’t allow someone else’s number to make you question your own.
Endometriosis Is Not a Competition
We don’t need to prove that our endometriosis is “bad enough.”
We don’t need to have stage 4 to deserve treatment, compassion or understanding.
We don’t need to compare our pain with another woman’s pain.
And we certainly don’t need to rank women according to their stage.
Endometriosis is a complex, chronic disease, and every person’s experience deserves to be taken seriously.
The stage can tell us something about the disease.
It cannot tell us everything about the person living with it.
And that distinction matters.
Because behind every stage is a woman.
And she deserves to be heard.
If you need guidance on dealing with Endometriosis or Adenomyosis, or if you want to be part of a community of endo warriors, join our WhatsApp support group.
References
- European Society of Human Reproduction and Embryology, Information on Endometriosis, based on the ESHRE Guideline on Endometriosis, Version 2022.
- Allaire C, Bedaiwy MA, Yong PJ. Diagnosis and management of endometriosis. CMAJ. 2023 Mar 14;195(10):E363-E371. doi: 10.1503/cmaj.220637. PMID: 36918177; PMCID: PMC10120420.
- International Working Group of AAGL, ESGE, ESHRE and WES; Vermeulen N, Abrao MS, Einarsson JI, Horne AW, Johnson NP, Lee TTM, Missmer S, Petrozza J, Tomassetti C, Zondervan KT, Grimbizis G, De Wilde RL. Endometriosis classification, staging and reporting systems: a review on the road to a universally accepted endometriosis classification. Facts Views Vis Obgyn. 2021 Dec;13(4):305-330. doi: 10.52054/FVVO.13.3.025. PMID: 34672508; PMCID: PMC9148706.
- Dr. Jose D. Eugenio, Instagram: Stages of Endometriosis.
- Dr. Joe Njagi, Instagram: Stages of Endometriosis.
