About 70% of clinical guidelines for endometriosis worldwide were developed without the involvement of women living with the condition. That is the conclusion of researchers from the University of Queensland, who examined guidelines from 47 countries, according to infohub.kz.
It emerged that most guidelines did not take into account the experience of women with endometriosis during their development. The 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. Some countries have no guidelines for the condition at all.
A quarter of the guidelines did not consider the views of adolescents. Yet symptoms of endometriosis and delays in diagnosis often begin as early as school age.
All the documents were developed with gynecologists, but fewer than half included the input of general practitioners. Meanwhile, it is often these specialists whom patients 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 up-to-date documents on endometriosis are marked in gray, including Kazakhstan.
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 condition affects about 10% of women of reproductive age — roughly 190 million people worldwide.
To date, endometriosis cannot be definitively cured, but its symptoms can be managed.
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 guidelines on endometriosis.
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