Endometriosis: The Years to Diagnosis Are Data Research Needs

Every figure in this guide comes from a published source, linked where it appears and most of them kept in CureCircle's evidence base with the source's own words. It is not medical advice. Read on 6 November 2026.

If you have endometriosis, the part of your story that took longest was probably not the treatment. It was getting anyone to name what was wrong. That stretch of years, the appointments, the tests that came back normal, the explanations that did not fit, is one of the things research on endometriosis most needs to understand, and almost none of it is recorded in a way research can use.

How many people live with it

According to the WHO, "endometriosis affects an estimated 10% (190 million) of reproductive age women worldwide". The Global Burden of Disease study counted 3,447,126 new cases reported globally in 2021. The WHO is also plain about what medicine cannot yet do: "there is currently no cure for endometriosis", and "access to early diagnosis and effective treatment of endometriosis is limited in many settings".

The road to diagnosis

The WHO notes that endometriosis "symptoms are variable and broad, meaning that healthcare workers may not easily diagnose it". A 2025 scoping review of the research found that the average diagnostic delay reported across studies was 6.8 years (range 1.5 to 11.4 years), and that the average masked very wide differences between countries.

Nearly seven years is a long record of symptoms, consultations and dead ends, held mostly in the memory of the person who lived it. Research into why diagnosis takes so long, which symptoms should have raised the question earlier, and which tests were missed starts from exactly those accounts.

The records worth keeping

NICE's guideline on endometriosis describes the investigations and treatment people usually go through:

• A transvaginal ultrasound scan, offered to all women or people with suspected endometriosis, even if pelvic or abdominal examination is normal.
• A specialist ultrasound or pelvic MRI to diagnose deep endometriosis and assess its extent.
• Laparoscopy, even if the ultrasound scan or MRI scan was normal, when endometriosis is still suspected.
• Hormonal treatment, such as the combined oral contraceptive pill or a progestogen.
• A pain and symptom diary: NICE asks clinicians to tell people that keeping a pain and symptom diary can aid discussions.

The scan and surgery reports, the prescriptions you tried and your diary together show how the condition was found and what changed it. If you do not have the reports, you can ask your clinic for a copy.

What sharing it is worth

CureCircle values every contribution with a public benchmark built from what health data has sold for. A complete endometriosis story with a year of the records the guideline lists comes to about $109 per licence on the benchmark today. With 60 entries of a pain and symptom diary added, it comes to about $286 per licence: a diary adds the day-by-day pattern that appointments never capture, and data linked to your own account of what you tried is worth more. You can value your own and see the source behind every line on the endometriosis page.

A licence is not a one-off sale: the same de-identified story can be licensed to several research teams, and you earn a share each time.

How to share it

On CureCircle, you start by writing what you live with in your own words. A few quick questions follow, including how long it took to get a diagnosis, then an AI interviewer asks about the details only you know, and you rate every treatment you tried, including the ones that did not help. You can add scan reports, letters and pages of your diary as PDFs or photos, and the AI reads them into your own medical file. Before anything is shared, you read the de-identified summary and decide.

Your years of not knowing are part of the evidence that could shorten them for someone else. Start your story, or read what your health data is worth first.