Endometriosis affects around one in ten women of reproductive age, yet many wait years for a diagnosis. My colleagues and I studied how long that wait is, and why, among women treated at a UK specialist endometriosis centre.
What we found
One hundred and one women completed a detailed questionnaire about their symptoms and their experiences of seeking help. The median delay from the start of symptoms to a diagnosis of endometriosis was eight years. For a quarter of the women it was fourteen years or more.
Several factors were linked to a longer delay:
- Painful periods in adolescence. The earlier symptoms began, the longer the delay tended to be, perhaps because period pain in teenagers is often regarded as normal.
- Normalisation of pain, by women themselves, their families or the people they consulted.
- The attitudes of health professionals, including symptoms not being taken seriously.
- Deep endometriosis between the vagina and the bowel (rectovaginal endometriosis).
The study was carried out at a single centre and relied on women’s recollections, so it cannot tell us everything about the experience across the UK. Its findings are consistent, however, with reports from other countries of delays of seven to nine years, and they suggest the delay has not improved much over the past two decades.
Why it matters
Endometriosis can affect every part of life: work, study, relationships, sleep, fertility and mental health. A long delay means years of symptoms without explanation, and sometimes disease that has progressed by the time it is found. Recognising it earlier allows women to make informed choices about treatment sooner.
What can help
- Keep a diary of your symptoms over two or three cycles: when pain occurs, how severe it is, and whether it affects your bowel or bladder, sex or daily life. It helps your doctor see the pattern.
- Be specific about the impact. “I miss two days of work every month” is easier to act on than “my periods are bad”.
- Ask directly whether endometriosis could be the cause. National guidance (NICE NG73) advises that endometriosis should be considered in women with long-standing pelvic pain, painful periods that affect daily activities, deep pain during sex, or pain with bowel or bladder movements around a period.
- A normal scan does not rule it out. Superficial endometriosis is usually invisible on imaging, although an experienced scan can often show endometriomas and deep disease.
If you have had pelvic pain or painful periods for years without a clear answer, you can read more on the endometriosis page, or book an appointment.