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Reproductive and Gynaecological Health 2021

Challenges to improve care in endometriosis

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Lone Hummelshoj

Chief Executive, World Endometriosis Society

Endometriosis is made up of many aspects and challenges; it is vital that we work collaboratively to improve the lives of those affected by the disease.


Endometriosis is a disease of many illnesses. It is a disease that is surrounded by taboos, myths, delayed diagnosis, hit-and-miss treatments and a lack of general awareness – overlaid on a wide variety of symptoms, including pain and infertility. For some it can turn into a chronic condition, potentially associated with life-altering comorbidities, including cancer and heart disease.1

Improving care in endometriosis is overdue – but has its challenges.

Getting diagnosed

First off it requires a diagnosis. The recent inquiry by the Endometriosis All Party Parliamentary Group in the UK showed an eight-year delay from first seeking help – and eventually being referred for treatment.2

Why the delay?

Symptoms of endometriosis typically starts during adolescence – a time where many young women don’t know what is normal and what isn’t in connection with their menstrual health. This leads to a delay in them seeking help. We need to change this. We need to help those affected find their voices – we need health care providers to listen with empathy, and act with integrity, when someone presents with symptoms suggestive of endometriosis.

The challenge of managing endometriosis

Secondly, the current management of endometriosis is hampered by limited medical treatments, which are all associated with variable side effects and effectiveness, as well as limited access to sufficiently skilled surgical care.3

We need to help those affected find their voices – we need health care providers to listen with empathy.

The challenge to improve care in endometriosis

Finally, an estimated 200 million people have endometriosis worldwide – yet legislative commitment to invest in basic research to understand the disease mechanisms is woefully missing. Without this basic knowledge of why endometriosis occurs and develops it is impossible to improve diagnosis and care for these millions of sufferers.

It is time to shout from the roof tops that pelvic pain and infertility matters and needs to be treated! It is time to sit up and pay attention and work together towards a future where no one’s life is compromised by the symptoms of endometriosis and adenomyosis.

If you wish to get involved in advancing legislative policy and scientific research, please contact the World Endometriosis Society at endometriosis.ca. If you are looking for support, please contact Endometriosis UK at endometriosis-uk.org.

1 Hummelshoj L. Endometriosis: an old problem without a current solution. Acta Obstet Gynecol Scand 2017;96:779-82.
2 http://endometriosis.org/news/general/endometriosis-inquiry-shows-little-improvement-in-a-decade/ (accessed 7 Feb 2021).
3 Johnson NP, et al for the World Endometriosis Society Montpellier Consortium. Consensus on current management of endometriosis. Human Reprod 2013;28:1552-8.

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