WCE2005: Best practice in endometriosis: when support groups and physicians work together

On 14 September 2005, 140 physicians and women with endometriosis came together for a day to discuss best practice in endometriosis as part of the 9th World Congress on Endometriosis, where the theme was “the patient as the partner”.

Endometriosis has proven to be elusive for scientists to get to the bottom of; for clinicians to treat satisfactorily; and, most importantly: to have a profound impact on the lives of those affected by the condition.

A lot of this is steeped in the fact that endometriosis is surrounded by taboos and myths, but we must also recognise that for too many years these three entities (scientists, clinicians, and patients) pursued the disease and illness separately – and subsequently never got too far. With the realisation, however, that all the stakeholders play a crucial part in solving the endometriosis puzzle, joint initiatives have emerged at local, regional, national, and international levels to move clinical expertise and research forward, and to improve overall quality of life for women with endometriosis.

This progress has been recognised by the 9th World Congress on Endometriosis where the patient is now seen as the partner, and where experiences in moving “best practice” forward will be presented, emphasising that when support groups and physicians work together they make things happen and our goals are achieved faster.

Whilst we will not be dwelling much on the fourth stake holder today, namely national governments, then it is worth mentioning that these have – or should have – a huge interest in endometriosis also. A disease, which has such a profound impact on anyone’s life, will also have a socio-economic impact. If a woman is not able to finish her education, maintain a career, have children, and, in addition, has to undergo multiple “hit and miss” treatments: this has a cost to society. And, through physician-patient partnership initiatives, this is now beginning to be recognised:

In the United Kingdom support organisations, physicians, and members of parliament have worked together since 2001 in the Endometriosis All Party Parliamentary Working Group, raising awareness amongst the public and legislators. Most recently, the EAPPG has conducted a Pain and Quality of Life survey, with data from 7,025 women with the disease (some of this data will be presented during this congress).
In June this year the Associazione Italiana Endometriosi, in conjunction with Societa Italiana di Endoscopia Ginecologica, got recognition for their hard work, when the Italian Senate voted in favour of the first act of the bill that will recognise endometriosis as a social disease.
The European Endometriosis Alliance succeeded this spring in getting 36% of MEPs to sign the 2005 Written Declaration on Endometriosis, through a coordinated campaign where support organisations and endometriosis specialists in 13 countries simultaneously wrote to MEPs to stress the importance of getting the disease on the agenda. This is the highest number of signatures ever collected for a health issue in the European Parliament.

Such progress is worth applauding. There is still some way to go, however, and there are specific areas on which we need to focus to get endometriosis recognised much more widely than it is today. This is the purpose of this afternoon’s workshops, where women with endometriosis and those who treat them will be brainstorming to come up with current challenges, potential solutions, and most importantly: action plans to move forward in our field.

We subsequently have an opportunity to present back at the 10th World Congress in 2008 on how we – through joint efforts across all disciplines – have made progress in:

Establishing centres of excellence
Preventing endometriosis and implementing self-help programmes
Getting international awareness through better profiling of the disease
Utilising all the capacities of support groups
Identifying and overcoming barriers, which have to be considered when women, especially adolescents, present with symptoms suggestive of endometriosis.

This is partnership for progress!