Silent endometriosis burden

“My worst nightmare has been confirmed. I have stage 4 endometriosis.” These words were shared publicly by Natalie Githinji, confronting a diagnosis that — for many women — comes only after years of living with pain and other symptoms they may not have understood. Her post describes extensive disease, including deep tissue implants, ovarian endometriomas and significant scar tissue.

There are women who have lived with severe menstrual pain for years without knowing that they may have a chronic disease. Some miss school or work every month. Some experience pain during sex, bowel movements or urination. Yet many women still do not know what endometriosis is, and many of those living with symptoms have been told, directly or indirectly, that painful periods are simply part of being a woman.

Endometriosis is a chronic inflammatory disease in which tissue similar to the lining of the uterus grows outside the uterus. It most commonly affects structures within the pelvis, although it can occur elsewhere in the body, including the abdomen and chest. The disease can cause inflammation, adhesions and scar tissue, and its presentation varies considerably from one woman to another. There is currently no cure, but symptoms can be treated and managed through medication, hormonal treatment and, for some women, surgery.

Burden

The scale of the problem should make endometriosis a public health priority. The World Health Organization estimates that approximately 10 per cent of women of reproductive age globally, around 190 million women, are living with endometriosis. Among women experiencing infertility, between 25 and 50 per cent may have the disease. Yet despite this burden, the average time between the onset of symptoms and diagnosis remains between 4-12 years.

Part of the problem is that the symptoms of endometriosis are still too easily normalised. Severe pain during menstruation is one of the most common symptoms. Women may also experience heavy menstrual bleeding, chronic pelvic pain, painful sexual intercourse, pain during bowel movements or urination, abdominal bloating, nausea, fatigue and infertility. Endometriosis can also have consequences for mental health, including anxiety and depression. Some women have few symptoms or none at all, which makes diagnosis even more complicated.

Abnormal menstruation

We therefore need to become much more precise when we talk to girls about menstruation. Menstruation can cause discomfort, but pain that repeatedly prevents someone from attending school, working, sleeping or carrying out ordinary activities should not simply be dismissed as a difficult period. Persistent pelvic pain, severe menstrual pain, progressively worsening symptoms, pain during sex, bowel or urinary symptoms associated with menstruation and unexplained infertility should prompt further assessment.

Health systems gaps and response

Women cannot seek appropriate care for conditions they have never been taught to recognise, and primary healthcare providers cannot consistently identify endometriosis if menstrual health histories, symptom recognition and referral pathways are weak. WHO itself acknowledges that many people with symptoms are unaware of the condition and that access to early diagnosis and effective treatment remains limited.

One of the major gaps is data

We need to know how many women are living with endometriosis, how long they wait for diagnosis, where they first seek care, what they pay out of pocket, how often they are misdiagnosed, and how the disease affects education, employment, fertility, mental health and household economic security. If we do not measure the burden, it will remain easy for health systems to under-prioritise it.

Policymakers should therefore begin treating endometriosis as part of mainstream women’s health rather than as a specialist issue that only becomes relevant when a woman reaches a gynaecologist. Primary healthcare workers need better training in menstrual and pelvic pain assessment. Referral pathways need to be clearer. Diagnostic imaging and specialist care need to become more accessible. Pain management, fertility care and mental health support should be considered part of comprehensive care where clinically appropriate. Public education should ensure that girls and women know the symptoms and know when to seek care.

Financial question

There is also a financing question. A commitment to universal health coverage has limited meaning if common chronic conditions affecting women remain difficult to diagnose or require significant out-of-pocket expenditure to investigate and manage. Endometriosis should therefore be considered within benefit-package design, clinical guidelines, reproductive health programming and national health financing discussions. WHO is currently developing a new global guideline on endometriosis intended to support timely diagnosis, effective management and integration into primary healthcare and universal health coverage.

But endometriosis should also force us to look beyond one disease. Women live with several conditions that have historically received insufficient attention, research and investment. Some are reproductive, some autoimmune, some related to pain, some linked to menopause, and many cut across these categories. What connects them is how easily women’s symptoms can become normalised until they are severe enough to disrupt their lives.

We should not require women to spend years proving that their pain deserves medical attention. We need better awareness among women, stronger clinical recognition, better data, affordable diagnosis and treatment, and explicit policy prioritisation of conditions that have remained neglected for too long.

I wish Natalie strength and the very best as she fights this disease, and I hope her decision to share her experience publicly helps more women recognise their symptoms, seek care and know that their pain deserves to be taken seriously.

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