Endometriosis: sharing resources and pooling knowledge

By Lone Hummelshøj Managing Editor, EndoZone.org | October 2, 2011


Dysmenorrhoea, infertility, bowel problems, nausea, dyspareunia, vomiting, fatigue and chronic pelvic pain are all symptoms associated with endometriosis. They are also topics that are taboo in today’s society. These are not issues that we can discuss over Sunday lunch with our nearest and dearest, nor at a family party, and often not even with our friends. These are not issues with which any of us would necessarily wish to be associated, but an estimated 89 million women and girls need to deal with these symptoms — and so do their physicians.

Both of these groups have unmet needs. Effective treatment options is one of them; the other is information about current knowledge and resources that will enable them to put together an individualised treatment plan tailored to the personal circumstances of the woman in question: be it to tackle pain, to resolve subfertility, or both.

Competing for time and being able to provide timely information is one of the challenges of the 21st century. The Internet enables a new way of thinking and a new way of interacting with each other.

The expert patient
According to the International Alliance of Patients’ Organisations, ‘All patients, no matter their condition, background or nationality, have a fundamental and legitimate human right of access to all kinds of information about their health, medical conditions and the availability of treatments including knowledge of the best available management for their disease’[1].

The era of the educated consumer has arrived. For women, a growing desire for information parallels a wish to take more responsibility for their health and be more involved in their treatment decisions. Patients accept less and less that health care professionals should unilaterally make these decisions for them. However, whilst women may be experts at having endometriosis, they are not experts at treating the disease. They need access to information about their options and expect health care professionals to act increasingly as facilitators or partners (Table I).
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