Endometriosis is often described as a “women’s health issue”, but that phrase doesn’t begin to capture the reality of living with it.
It’s a chronic, inflammatory condition that affects millions worldwide, disrupts daily life, and yet is still widely misunderstood, under-researched and under-diagnosed.
Despite how common it is, many people live with endometriosis for years before getting answers. Too often, they’re told their pain is “normal,” that they’re overreacting, or that it’s just part of having a period.
It’s not.
This is what endometriosis really is, the symptoms to know, and why visibility, from research to people speaking out about it, matters so much.
What Is Endometriosis?
Endometriosis is a chronic condition where tissue similar to the lining of the uterus (the endometrium) grows outside the womb.
This tissue can be found on:
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The ovaries
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The fallopian tubes
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The bowel or bladder
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The pelvic lining
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And, in rare cases, organs beyond the pelvis
Unlike the uterine lining, this tissue has nowhere to shed. Each cycle, it can trigger inflammation, scarring, and adhesions, leading to ongoing pain and, for some, fertility challenges.
Endometriosis is complex and unpredictable. It can start with the first period and continue through perimenopause and menopause.
How Common Is Endometriosis?
Endometriosis affects around 1 in 10 women and people with periods, approximately 190 million people worldwide.
Yet despite its prevalence, endometriosis is still severely under-researched, under-diagnosed and under-funded. For a condition this common and life-altering, that gap matters.
“But You Don’t Look Sick” - The Reality of Symptoms
Endometriosis is often called an invisible illness, because its symptoms aren’t always visible, but they are very real.
Symptoms vary from person to person, but common signs include:
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Severe period pain (often not relieved by painkillers)
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Heavy or irregular bleeding
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Chronic pelvic, abdominal, lower back, hip, vaginal, or rectal pain
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Abdominal bloating (“endo belly”)
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Pain during or after sex
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Bowel or bladder pain
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Painful bowel movements or urination
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Nausea
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Fatigue
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Fertility challenges
And still, many people are told this level of pain is “normal.” It isn’t.
Why Does Endometriosis Take So Long to Diagnose?
On average, it takes 7–10 years to receive an endometriosis diagnosis.
That delay isn’t accidental. It’s the result of systemic gaps, including:
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Pain in women being routinely minimised
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Symptoms overlapping with what’s considered a “normal” period
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A lack of non-invasive diagnostic tests
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Diagnosis often requiring surgery (laparoscopy)
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Being told to “try the pill” and live with the pain
That delay costs more than time. It affects mental health, education, work, relationships, fertility and long-term wellbeing.
Why Visibility Matters: People Speaking Up
Public figures speaking openly about endometriosis have helped shift awareness and reduce stigma.
Prominent voices include:
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Lena Dunham, who has spoken about chronic pain and ultimately underwent a hysterectomy due to severe endometriosis
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Padma Lakshmi, who founded the Endometriosis Foundation of America after years of pain and delayed diagnosis
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Whoopi Goldberg, who has shared how long she lived with symptoms before getting answers
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Lili Reinhart, who recently shared the endometriosis diagnosis she received after going through laparoscopic surgery, after years of dismissed symptoms and misdiagnoses.
When people with platforms speak openly, it helps others recognise symptoms, feel less alone and seek care sooner.
What is being done about it?
Progress is happening, from research into menstrual-blood diagnostics to greater public awareness, but it’s long overdue.
Read more about some promising recent research in our blog article here.
Endometriosis may be invisible, but it is real.
It is painful. And it is life-changing.
Understanding it, talking about it, and believing people when they speak about their pain is how change happens. No one should have to suffer quietly for years to be taken seriously.
Sources
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World Health Organization (WHO): Endometriosis Fact Sheet
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Endometriosis UK
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Endometriosis Foundation of America
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National Health Service (NHS)
