Endometriosis is as common as rheumatism and diabetes, yet most people know little or nothing about it. Endometriosis is a disease in which endometrium cells – cells generally found inside the uterus– are located outside of the uterus.  These cells are then in the abdominal cavity, on the peritoneum, between the organs or in the pelvis. The consequences are intense abdominal pain, reduced fertility and pain during sexual intercourse. As a result, the quality of life for women with endometriosis is often significantly lower than for women who do not have it.

Menstruation is a taboo subject around the world

The taboo surrounding menstruation can have a significant impact on women’s health. Even in our free Western societies, talking about a disease related to menstruation is considered taboo. Therefore, in most cases, endometriosis is discovered very late, sometimes 7 to 8 years after the first symptoms. Since the symptoms are often most intense around menstruation, women – but also general practitioners and specialists – often think the cramps are regular menstrual pain. As a result, many patients do not dare to complain about their symptoms for fear that doctors will consider them posers or overt complainers. Moreover, even if there were treatments like painkillers, medication or an operation, often,  the pain does not always disappear. The reason for this is still unclear.

Endometriosis is a social problem 

“Macron has included tackling endometriosis in his election program, and he’s delivering on that promise,” says Zacharopoulou. She is an MEP and gynaecologist. Announcing the National Endometriosis Action Plan, Macron says, “Endometriosis is not a women’s problem; it is a societal problem. Women who suffer from it cannot work, cannot participate in the economy, and have less time for their children. We must understand that being in so much pain that you can’t function is not normal.” In a video posted on social networks, the head of state says: “They are called Sandrine, Lola, Charlotte or Evora and they are exhausted. Exhausted by a pain that can range from fainting to not being able to get up to go to sleep. This issue is close to my heart, and I hereby launch our first national strategy to combat endometriosis.” 

France chooses pioneering role in Europe

Health Minister Olivier Véran announced that France wants to be a leader in the fight against endometriosis. Zacharopoulou wrote the endometriosis action plan that will run from 2022 to 2025. Endometriosis affects more than two million women in France, she writes. And yet endometriosis is largely ignored by both specialists and the general public. The national strategy aims to better understand this disease and its causes and find therapeutic treatments. The report centres on three focal points: scientific research, improved access to care and raising awareness. There will be specific national funding to implement the three spearheads. In addition, France will have the world’s largest database on endometriosis. By combining and structuring several existing databases, researchers can follow more than 11,000 women in real-time. 

The French tech sector is also helping out!

A startup in Lyon developed a saliva test that– thanks to DNA sequencing– provides the diagnosis of endometriosis in just a few days. The first results of clinical trials are encouraging: in 200 patients, the test proved 97% effective. 

The test is less invasive than laparoscopy and could be used more widely. This innovation offers hope for all those waiting for a diagnosis. Hopefully, this ‘endotest’ goes to market soon. 

Will the Netherlands also come up with a national action plan?

Endometriosis in Balance is a specialised endometriosis centre in Bronovo, The Hague. By 2020, they will be certified by the European Endometriosis League as a centre of excellence and as one of the few endometriosis specialised centres in Europe. That’s good, but not good enough. The question is: Will Rutte also develop a national action plan to tackle endometriosis? On March 21, 2022, the Green Left asked the Minister of Health, Ernst Kuipers, to pay attention to endometriosis.

Resources:

Health: Emmanuel Macron announces national plan to fight endométriosis, which affects one woman in six: https://www.francebleu.fr/infos/sante-sciences/sante-emmanuel-macron-annonce-un-plan-national-de-lutte-contre-l-endometriose-qui-touche-une-femme-1641971140

Report on the proposal for a national endometriosis strategy (2022-2025). By Dr Chrysoula Zacharopoulou: https://solidarites-sante.gouv.fr/ministere/documentation-et-publications-officielles/rapports/sante/article/rapport-de-proposition-d-une-strategie-nationale-contre-l-endometriose-2022

Endometriosis: https://www.who.int/fr/news-room/fact-sheets/detail/endometriosis

Fighting endometriosis: ‘I don’t know what it means to be free from pain’: https://amp.france24.com/en/europe/20220120-fighting-endometriosis-i-don-t-know-what-it-means-to-be-free-from- pain#aoh=16478507335285&referrer=https%3A%2F%2Fwww.google.com&amp_tf=Van%20%251%24s

About The European Endometriosis League: https://euroendometriosis.com/about/

Endometriosis in Balance. Expertise centre in the hospital: https://endometrioseinbalans.nl/

Attention to endometriosis in the House of Representatives: https://www.endometriose.nl/index.php?page=1278&sid=2

We need to break the taboo around endometriosis: https://www.maastrichtuniversity.nl/nl/nieuws/%E2%80%98%E2%80%98we-moeten-het-taboe-rond-endometriose-verbreken%E2%80%99%E2%80%99

French start-up develops saliva test to quickly detect endometriosis: https://marieclaire.be/nl/franse-start-up-ontwikkelt-speekseltest-om-endometriose-snel-op-te-sporen/