About 70% of clinical guidelines on endometriosis worldwide were developed without the participation of women living with the condition. This was reported by Qazaqyia.kz citing Kursiv Media.

These are the conclusions of researchers from the University of Queensland who studied guidelines from 47 countries.

Patient experience overlooked

The study found that most guidelines did not take into account the experience of women with endometriosis during development. Gaps are especially noticeable in countries in Africa and the Eastern Mediterranean.

For the most part, such documents exist in high-income countries, primarily in Europe. In some states, there are no national guidelines on the disease at all.

A quarter of the guidelines did not consider the views of adolescents. Yet endometriosis symptoms and delays in diagnosis often emerge as early as school age.

Differences in diagnosis and treatment

All documents were developed with gynecologists, but fewer than half included the views of general practitioners. Meanwhile, it is these specialists that patients often consult first.

In addition, the guidelines differed substantially on diagnosis, treatment, fertility preservation and non-pharmacological symptom control.

The authors published a map of existing endometriosis guidelines. Countries with their own clinical guidelines are marked in green, while those without current endometriosis documents are marked in grey — including Kazakhstan.

What is endometriosis

Endometriosis is a chronic condition in which tissue similar to the lining of the uterus grows outside it.

It can cause severe pain and fertility problems, as well as affect quality of life. The disease affects about 10% of women of reproductive age — roughly 190 million people worldwide.

To date, endometriosis cannot be completely cured, but its symptoms can be managed.

Need for unified standards

According to the researchers, unified standards could help reduce inequality in access to medical care. They plan to work with the WHO to develop such international recommendations on endometriosis.

In September 2026, doctors agreed for the first time on a single definition of heart attack. Read about how the new recommendations will affect diagnosis in women in the Kursiv Health article.

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