When Kenyan media personality Natalie Githinji spoke about being diagnosed with stage 4 endometriosis, the description raised an important question: what does “stage 4” actually mean?
According to endometriosis specialist Dr Joe Njagi, the term should be understood carefully because there is no universal consensus on staging endometriosis.
“There’s no record of stage 1, stage 2, stage 3, stage 4,” Dr Njagi explains, noting that different classification systems do use stages to describe the extent of the disease.
Rather than viewing endometriosis strictly through stages, he says it is more useful to think about the disease in terms of its extent, from minimal disease to intermediate and extensive or late disease.
What does stage 4 generally indicate?
In classification systems that use stages, stage 4 generally represents extensive or severe endometriosis.
The disease can deeply infiltrate tissues and affect organs beyond the surface of the pelvis. Dr Njagi notes that endometriosis can involve the intestines and, in some cases, the diaphragm and chest.
However, the extent of the disease does not necessarily determine how much pain a person experiences.
Severe disease does not always mean severe symptoms
One of the most important points Dr Njagi makes is that symptoms do not always correlate with the extent of endometriosis.
A person with extensive disease may experience relatively few symptoms, while someone with less extensive disease may experience severe, debilitating pain.
“This can be actually considered as stage 4 of endometriosis,” Dr Njagi says of extensive disease, while stressing that the classification itself is not universally agreed upon.
This means that a diagnosis such as “stage 4” does not, on its own, tell the full story of what a patient is experiencing.
Doctors also need to consider whether the disease is affecting fertility, causing severe pain or involving other organs.
When endometriosis affects other organs
Endometriosis can sometimes infiltrate the bowel, bladder or urinary tract. When this happens, the symptoms and complications can be very different from those associated with pelvic pain alone.
For example, bowel involvement can potentially cause narrowing or obstruction. Endometriosis affecting the bladder or ureter may require the involvement of a urologist.
Dr Njagi also points to less common cases where endometriosis affects the diaphragm or chest. In such cases, patients may experience breathing difficulties or complications involving the lungs.
This is why the location and depth of the disease can be just as important as the label attached to it.
Why a multidisciplinary team matters
For patients with extensive or complex endometriosis, Dr Njagi recommends care involving an experienced endometriosis specialist and a multidisciplinary team.
“Endometriosis is not a one person,” he says, explaining that he works with other specialists depending on which organs are affected.
A colorectal surgeon may be needed where the intestines are involved, while a urologist may be required for disease affecting the bladder or ureters. Where the chest is involved, a cardiothoracic team may be part of the patient’s care.
The goal is to ensure that the disease is assessed from all relevant angles rather than treating it as a condition affecting only the reproductive system.
What does this mean for someone told they have stage 4?
For someone like Natalie Githinji, who has publicly spoken about being told she has stage 4 endometriosis, the terminology indicates that her doctors consider her disease extensive under the classification being used.
But the label alone does not tell us how much pain she should experience, nor does it capture the full impact of her condition.
The more important questions are: Where is the endometriosis? How deeply has it infiltrated? Which organs are affected? Is fertility affected? And what symptoms or complications is the patient experiencing?
Ultimately, Dr Njagi’s message is that endometriosis should be assessed as an individual condition rather than relying solely on a stage number.
For patients with extensive disease, having an experienced endometriosis specialist coordinate care with other relevant specialists can be crucial to understanding the disease and determining the most appropriate treatment approach.
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