What needs to be done for women with endometriosis?

With an estimated 176 million women in the world affected by the painful consequences of endometriosis, it is shameful how little commitment there is to invest in basic research so that the life altering realities of endometriosis can be prevented in the next generation of women.

Last year on International Women’s Day we asked 20 health care professionals, who have dedicated their professional careers to increasing the understanding of endometriosis, to give their take on what needs to happen to care better for women with endometriosis today – and what we can do to improve their lives tomorrow.

Nothing has changed in the past year, so we are republishing these in the hope that come 2017 we will have seen some progress!

Professor G David Adamson (President, World Endometriosis Research Foundation)

Women must be enabled to find their voice. Families and societies should care more about women. Providers must listen with empathy and act with integrity.

More and better research results in a simple, non-invasive, universal test and safe, cost-effective treatments for pain and infertility.

Professor Stacey Missmer (Boston Centre for Endometriosis, USA)

We need to shout from the rooftops that pelvic pain matters!

We need to make this clear in medical school education, for general and family practitioners, for school teachers and parents. We need to make this clear by focusing in our research on patients who present with pain as often if not more than we focus on patients who present with infertility.

Professor Christian Becker (University of Oxford, United Kingdom)

Endometriosis treatment is too often unsuccessful or has too many side effects.

We need to rethink our classification and better distinguish different forms of endometriosis to individualise diagnostics and therapy. Only large-scale studies with standardised data/sample collection will bring us closer to reaching this goal.

Professor Neil Johnson (University of Auckland, New Zealand)

Women who have – or might have – endometriosis should have accurate low-invasive diagnosis, classification that is meaningful and makes a genuine positive difference for them and access to effective treatments to improve quality of life and fertility.

We need to pool resources/knowledge/research findings from international experts in partnership with women with endometriosis and their representatives.

Professor Johannes (Hans) Evers (University of Maastricht, The Netherlands)

In most endometriosis patients, irreparable damage is done during their first surgery by kind but under qualified surgeons. If non-surgical options fail, a centre with expertise in endometriosis surgery is the next step.

Showing that “removing some endometriosis” during a diagnostic laparoscopy, just “because you are there anyhow”, is a major medical mistake.

Professor Philippe Koninckx (Leuven, Belgium/Rome, Italy)

No long term medical treatment without a diagnosis. Informed consent explaining the expertise of the surgeon.

Surgery should be documented by video-registration/images which together with the pathology report permits to judge indication and quality of surgery. The aim is prevention of over-treatment of subtle lesions with adhesion formation and to prevent avoidable bowel resections.

Professor Serdar Bulun (Northwestern University, Chicago, USA)

The current clinical definition of endometriosis is strictly anatomical and does not reflect the modern understanding of its mechanisms or the symptoms of patients suffering from this disorder.

Endometriosis should be broadened to include recurrent pelvic pain aggravated by menses and responsive to treatment with hormonal medications and resection by appropriately trained surgeons.

Professor Ian Fraser (University of New South Wales, Sydney, Australia)

We need to teach physicians, health professionals, and women of the world that the condition called endometriosis is a very common cause of severe pelvic pain, usually beginning in adolescence – and needs ongoing management and prevention of recurrences.

We must activate the world’s media through powerful personal stories on slow news days!

Dr Juan Antonio García Velasco (IVI Madrid, Spain)

From my perspective, we need EARLY diagnosis of the disease, from early detection of women at risk (family, genetics, metabolomics…) to women with symptoms already.

Fundamental basic research is needed to understand this disease, not just the tip of the iceberg but the huge amount of information underneath.

Professor Mette Nyegaard (Aarhus University Hospital, Denmark)

Endometriosis is a complex disease with both genes and environmental factors contributing to risk.

We need to study the DNA and lifestyle from thousands of woman with and without disease to identify the risk genes, because after that, we can importantly start identifying risk factors in the environment. The goal is to know what to avoid, if you are genetically predisposed to endometriosis.

Heather Guidone (Centre for Endometriosis Care, Atlanta, USA)

We must improve outcomes in endometriosis.

This involves elevating the disease to a priority public health platform, raising authoritative awareness, facilitating timely intervention and diagnoses, removing barriers to effective treatments, and providing better support of all those affected by empowering, educating and collaborating across all sectors of the global disease community.

Professor Andrew Horne (University of Edinburgh, Scotland)

We need to develop a national care pathway to raise awareness of endometriosis and guide its management, ensuring women are seen by the most appropriate clinician at the most appropriate time.

We submitted a proposal to National Services Scotland on 3 March 2015 to fund and support a Endometriosis National Managed Clinical Network.

Dr Moamar Al-Jefout (Mutah University, Karak, Jordan)

We need to listen to women’s complaints carefully to shorten the delay in diagnosis of endometriosis and try our best to minimise their suffering by keeping ourselves updated with the most recent advances in diagnosis and pain and infertility management.

Dr Paul Yong (British Columbia Women’s Centre for Pelvic Pain and Endometriosis)

We need to further understanding of how endometriosis leads to sexual pain and dysfunction.

This can only be achieved through a multidisciplinary approach including gynaecology, psychology, and physiotherapy.

 

Professor Carlos Petta (University of Campinas, Brazil)

Women with endometriosis need to know more about the disease, and have better and qualified treatment to achieve a common goal: improvement of quality of life.

This can only be achieved with awareness, information, and access to specialised care services.

Dr Cameron Martin (EXPPECT Edinburgh, Scotland)

National managed networks for treatment of endometriosis will increase awareness and improve management through development of pathways for treatment.

It will also be an excellent mechanism to stimulate research and collect more information about women with the disease.

Dr John Dulemba (The Women’s Center, Denton, USA)

Women’s pain and suffering has been ignored for decades. It is time to acknowledge that endometriosis should be treated early and aggressively, and not to wait until other organs are involved, and it is too difficult to remove.

For the good of our patients, experts need to work together about establishing causes and treatments of this disease.

Dr Harry Reich (Medical Director, Endometriosis Foundation of America, USA)

Excise it! – With scissors.

We need to continue to invest in training surgeons to undertake what is very complicated surgery and to recognise that surgery should only be undertaken by those skilled in excising endometriosis.

 

Professor Edgardo Rolla (President, Sociedad Argentina de Endometriosis)

We must optimise pre-surgical clinical diagnosis (serology, imaging), introduce new drugs with less side effects, more potent and long-term action), and provide better social support and media information.

More research funds for scientists everywhere (basic science, medicine, biology, farmacology, imaging, psychology) and mass media communication is needed.

Sallie Sarrel (Pelvic health physical therapist, New York, USA)

Women with endometriosis need to understand that pain is multifaceted and alleviating symptoms may take more than just one approach.

Collaborative efforts with surgeons working with skilled practitioners, such as pelvic pain physical therapists, helps women with endometriosis live better.

 

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