First global consensus on the management of endometriosis

London, 26 March 2013

The World Endometriosis Society achieved a major milestone today when the first ever consensus on the management of endometriosis was published in Human Reproduction [1].

56 representatives of 34 global organisations have come together to agree on the current management of endometriosis and to call for more research to reduce the high impact of quality of life in a disease where research priorities are low.

This is the first time the voices of the patient societies have been included as well.

Why a consensus on endometriosis?

Management of endometriosis anywhere in the world has been based partially on evidence-based practices and partially on unsubstantiated therapies and approaches. Several guidelines have been developed by a number of national and international bodies, yet areas of controversy and uncertainty remain, not least due to a paucity of firm evidence.

A total of 69 consensus statements were developed by the WES Montpellier Consortium. Seven statements had unanimous consensus; however, none of the statements were made without expression of a caveat about the strength of the statement or the statement itself. Only two statements failed to achieve majority consensus. The statements covered global considerations, the role of endometriosis organisations, support groups, centres or networks of expertise, the impact of endometriosis throughout a woman’s life course, and a full range of treatment options for pain, infertility, and other symptoms related to endometriosis.

Evidence based medicine is a skill

Said consensus co-convener, Neil Johnson MD, Vice President of WES:

Evidence based medicine is the skill – perhaps even the art – of being able to integrate the best available scientific evidence and to apply it to each patient’s individual situation. The World Endometriosis Society consensus on current management of endometriosis is a unique collaboration between clinicians of all disciplines involved in treating women endometriosis along with representatives of women suffering from the disease that has sought to achieve this integration. What we have achieved is more than ‘recommendations’ or ‘a guideline’; it is a concentrate of immense clinical experience, research efforts, and cooperation together with women with endometriosis.

For the first time ever, women with endometriosis had their voices included

These words were echoed by WES President, Paolo Vercellini MD, who emphasised that whereas several guidelines are available on the management of endometriosis, the unique flavour of the WES Consensus is that, for the first time, 16 patients’ societies were included as active participants in the process, thus putting the woman with endometriosis at the centre of global care perspectives.

Women are willing to achieve results that are important for them. The fundamental aim of gynaecologists treating endometriosis must be the definition of personalised, long-term, treatment strategies that take into consideration the individual woman’s point of view, as well as her priority for different outcomes. Women may have varying degrees of acceptance towards surgical risks or side effects of drugs, and may chose diverse therapeutic options when facing the same clinical problem. The WES Consensus, developed by keeping the woman with endometriosis in constant focus, will aid physicians in counselling correctly their patients and informing them not only about consistent evidence, but also about areas of conflicting findings. WES has developed a practice reference for the real world from an authoritative international research community.

said Dr Vercellini.

Recommendations based on evidence – and acknowledgment of missing evidence in endometriosis

Professor Linda Giudice, President Elect of WES, emphasised that the unique dedication of the attendees and the organisers resulted in conclusions that were based firmly on scientific evidence with a clear acknowledgment of areas where evidence is lacking.

This is a credit to the rigor with which this endeavour was undertaken with the long-term goal of improving the wellbeing of millions of women and teens afflicted with this disease worldwide. We believe that this consensus statement will focus world attention on endometriosis, a debilitating disease that is in need of improved diagnostics and management approaches for all who are afflicted and as well as their families.

said Professor Giudice.

Global collaboration among all stakeholders is key in endometriosis

As a co-convener, and a woman with endometriosis, Lone Hummelshoj said that:

It was a privilege to have the opportunity to share ideas with so many committed individuals in the consortium: the passion, enthusiasm, and wisdom of those involved was a key ingredient of this ‘concentrate’ of recommendations. To have a dialogue among all stakeholders about this horrible disease is an amazing step towards progress in global collaboration — not only in treatment, but also in basic research, to move our field forward so that the next generation of women with endometriosis doesn’t have to suffer as previous generations have.

Reference