BBC's Emma Barnett calls for urgent action on endometriosis affecting 1 in 10 women

Emma Barnett sits across from Chloe in her Edinburgh home, listening to a 26-year-old woman explain why she has decided to have her womb removed. Chloe is not sick in the way most people understand sickness. She has endometriosis, a disease that has systematically dismantled her life, and after one surgery failed to bring relief, she sees hysterectomy as her only path forward—even though it means surrendering any chance of biological motherhood. "I'm at the point now where I would not be able to look after a child," Chloe says, tears streaming. "I just want everything out."

Barnett, a BBC presenter who shares Chloe's diagnosis, spent six months traveling across the UK for a documentary, meeting women whose lives have been hollowed out by a disease that most people have never heard of. Endometriosis affects one in ten women of reproductive age—more than 1.5 million in the UK alone, though the true number is likely far higher because so many go undiagnosed. It is not, as popular myth suggests, simply a painful period. It is a systemic inflammatory disease in which cells similar to those lining the womb begin growing elsewhere in the body—on the bowel, in the lungs, across the pelvis. Each month, activated by hormonal shifts, these cells thicken and bleed, creating raw sores that scar surrounding tissue and fuse organs together. The pain is not metaphorical. Women describe it as bone-grinding, as something that steals the ability to speak, sleep, or eat. The late author Hilary Mantel, who lived with endometriosis, wrote that everything she achieved came "in the teeth of the disease." Barnett thinks of those teeth most days.

The path to diagnosis is itself a form of suffering. In the UK, it takes an average of nine years and four months for a woman to be diagnosed—and for women from ethnic minority backgrounds, the wait stretches to eleven years or longer. Madalitso, who arrived in the UK from Malawi at thirteen, waited twenty-five years. During that quarter-century of pain, doctors removed her healthy appendix, convinced it was the source of her agony. She is now scheduled for surgery aimed at destroying the endometriosis tissue, hoping simply to reclaim her life from the grip of unrelenting pain.

Once diagnosed, women discover there is no cure. Surgery can reduce pain for some, but for others it provides only temporary relief or none at all. Chloe, desperate for help, crowdfunded her previous surgery abroad because NHS gynaecology waiting lists had grown so long that nearly 750,000 women were queued for care. The surgery she paid for herself was supposed to give her five years of relief. Within months, the endometriosis had returned everywhere. Now she moves slowly through her home, living what she calls a very small life, moving from heating pad to heating pad, trying to find any position that does not amplify her suffering.

What makes endometriosis particularly invisible as a public health crisis is the absence of any standardized NHS pathway for its management. Dementia and diabetes—conditions affecting fewer people—have dedicated diagnostic and care pathways. Endometriosis, affecting more than 1.5 million UK women, has none. This means each woman must essentially assemble her own medical team, navigate her own treatment plan, and hope she finds a rare specialist centre willing to take her case. The economic toll is staggering: endometriosis costs the economy £12.5 billion annually, largely because it forces women out of work. One in six women with the condition in the UK eventually leaves the workforce permanently. For many, it is not that they choose to stop working—it is that the disease makes it impossible to continue.

When Barnett raised these issues with then-Health Secretary Wes Streeting, his response was telling. He expressed surprise that no NHS pathway existed for a disease affecting so many women. "Yes, that should already exist," he said. "I accept that." A Department for Health and Social Care spokesperson subsequently stated the government was committed to accelerating diagnosis and redesigning how patients access care for pelvic pain and endometriosis, with plans to reduce repeat appointments and unnecessary referrals. Streeting also acknowledged the need for dedicated research funding, noting that Australia and France have created national action plans for the disease.

Yet for the women living inside this condition, government acknowledgment feels distant from daily reality. They cannot work. They cannot maintain relationships. They cannot care for their children, if they are able to have them at all. They cannot simply exist in their own bodies without fighting for relief. They beg doctors to believe them. They live, as Barnett writes, within the teeth of a vicious disease that has outfoxed the world's best medical minds. The mystery of how and when endometriosis begins remains unsolved. Until it is, millions of women will continue to lose pieces of their lives to a condition that steals in both daylight and shadow.