Endometriosis, the whole picture

Endometriosis is a condition in which tissue similar to the lining of the womb grows in other places in the body. It is most commonly found in the pelvis, on the ovaries, fallopian tubes, the tissue lining the pelvis, the bowel, and the bladder. In rare cases it has been found further afield.

This tissue responds to the hormonal changes of the menstrual cycle just as the womb lining does. Each month it swells, breaks down, and bleeds, but unlike the womb lining, it has nowhere to go. This causes inflammation, scar tissue, and over time can affect the function of the organs it grows near.

Endometriosis is not an infection. It is not contagious. It is not caused by anything a woman has done or not done.

Endometriosis affects approximately 1 in 10 women of reproductive age worldwide. In the UK, that translates to approximately 1.5 million women living with the condition.

Despite how common it is, endometriosis is significantly underdiagnosed. In England, the average time between first symptoms and diagnosis is 8 years and 10 months, this figure comes from a survey of 4,371 women across England.

The delay in diagnosing endometriosis is not primarily because the condition is hard to find. It is because of how period pain is treated culturally and medically.

A systematic review of the barriers to timely endometriosis diagnosis identified the following patterns: • Difficulty distinguishing pathological pain from what has been presented as normal menstruation • Use of self-management (painkillers, heat) while not seeking medical help • Menstrual stigma, the sense that period pain is private, shameful, or to be endured • Dismissal by healthcare professionals, symptoms minimised, attributed to stress, or told it is "just periods" • The oral contraceptive pill being prescribed without investigation, masking symptoms without addressing the underlying cause • The absence of a simple non-surgical diagnostic test, until recently, definitive diagnosis required laparoscopy (keyhole surgery)

A meta-analysis found that Asian women are more likely to be diagnosed with endometriosis than White women (OR 1.63, 95% CI 1.03–2.58), but the authors note this may reflect structural and methodological factors rather than true biological difference.

The experiences of South Asian women are not represented in the evidence that shapes their care. That absence is part of the problem this app exists to address.

Endometriosis is not only a fertility condition. It affects quality of life, daily function, mental health, and multiple body systems.

A 2025 international Delphi consensus identified 6 core endometriosis symptoms: 1. Menstrual pain (dysmenorrhea), period pain that is severe, affects daily life, or is progressively worsening year on year 2. Pain during or after sex (dyspareunia), particularly deep pain, often not reported because of embarrassment 3. Cyclical bowel pain, pain when opening the bowels that follows the menstrual cycle 4. Cyclical pelvic pain, pelvic pain that occurs outside of periods but follows a pattern related to the cycle 5. Difficulty conceiving, endometriosis is found in approximately 25 to 50% of women investigated for fertility difficulties 6. Multiple doctor visits for pelvic or abdominal pain, a pattern of repeated presentation without resolution or clear diagnosis

Additional symptoms: • Cyclical bladder symptoms, pain when passing urine, blood in urine, or urgency • Heavy periods • Bloating, sometimes described as "endo belly" • Fatigue, often described as profound, different from ordinary tiredness • Sciatic or leg pain if nerves are involved • Shoulder pain during periods (rare but associated with diaphragmatic endometriosis)

Women with endometriosis report significant impacts on every area of life: • Work, time off during periods, reduced productivity, career decisions made around symptom management • Relationships, pain during sex affects intimacy; the emotional burden affects partnerships • Social life, cancelling plans, managing symptoms in public, the unpredictability of pain • Mental health, chronic pain is strongly linked to depression and anxiety; the experience of not being believed adds to this burden • Identity, for some women, the condition becomes central to how they understand themselves

Endometriosis costs the UK economy approximately £8.2 billion annually in healthcare costs and lost productivity. This is not abstract. It is the lived experience of millions of women.

In South Asian families and communities, menstrual pain is frequently normalised. "This is just how periods are." "Your body will adjust after marriage." "After having children it will settle." These statements are passed on with the best of intentions, they are how generations of women have supported each other through something painful and private.

But they can also mean that a woman lives with severe, progressive, diagnosable pain for years before it is identified and treated.

Discussing menstrual pain, especially pain during sex, may feel deeply uncomfortable in a cultural context where these topics are not spoken about openly. This discomfort is understandable. It is also one of the reasons the diagnostic delay exists.

You do not have to describe your symptoms using medical language. Describing what you experience, how it affects your life, and how it has changed over time gives a clinician what they need to help.