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Between 1.5 and 2.5 Million Women in France and the Impact of Endometriosis: What’s the Source of This Data?

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Hélène Laporte, an RN deputy, introduced a bill in the Assembly to support women impacted by endometriosis, a chronic gynecological condition affecting 1.5 to 2.5 million in France. The French National Health Insurance states nearly 10% of menstruating women are affected, though underestimation is common. A significant study, Epi-Endo, will begin in November to better understand the disease’s prevalence and risk factors. Currently, diagnosis is delayed by 7 to 12 years, with many women consulting multiple healthcare professionals before receiving a diagnosis.

In a bold move to support women grappling with endometriosis, RN deputy Hélène Laporte has introduced a bill in the Assembly. She describes endometriosis as a ‘complex’ condition that ’causes significant daily repercussions’. To underscore the gravity of the situation, Laporte cites that between 1.5 and 2.5 million women are affected by this condition in France.

Consensus on Prevalence, but More Research Needed

This figure is widely recognized, with the French National Health Insurance identifying endometriosis as ‘a prevalent inflammatory and chronic gynecological issue that impacts nearly 10% of menstruating women’. Epidemiologist Marina Kvaskoff, who has been studying the links between endometriosis and cancer since 2005, confirms that while this percentage is generally accepted, we still lack ‘detailed estimates’ on a broader scale.

According to Kvaskoff, the prevalence of the disease ‘varies depending on the studied samples’. For instance, among women who have had tubal ligation, the rate of endometriosis is evident in 12 to 14% of cases, and it spikes to ‘50% for those facing infertility’. In more restrictive medico-administrative databases that focus solely on women who have undergone surgery, the statistic reduces significantly, hovering around 1%.

‘In the general population, we often see an underestimation’, Kvaskoff explains, while symptoms can lead to a different narrative. Generally, it’s estimated that 2 million women are affected by endometriosis between the ages of puberty and menopause.

Fortunately, awareness of endometriosis is poised to grow in the coming years thanks to the ‘Epi-Endo’ initiative, led by Inserm’s Kvaskoff. Launching in November, this program aims to cross-reference data from six French cohorts alongside environmental and genetic factors. The goal is to enhance the identification of risk factors while offering a clearer understanding of the prevalence of endometriosis in the population. Ultimately, Epi-Endo aims to involve over 200,000 women and girls, marking it as the most extensive study of its kind ever conducted in Europe.

Delayed Diagnoses Remain a Challenge

Inserm estimates that the actual number of women suffering from endometriosis is ‘likely underestimated’. This gynecological issue, despite its frequency, is often poorly recognized, they note. Marina Kvaskoff highlights that the average time from the onset of symptoms to diagnosis can take anywhere from 7 to 12 years. ‘When you consider this timeline, many cases may remain unrecognized.’

Nonetheless, Kvaskoff points out a positive shift in recent years—a kind of ‘menstrual revolution’ that has broken down taboos surrounding menstruation and its related pain. While diagnosing endometriosis can still be challenging, as some variations of the disease are not always easily detectable, open discussions about endometriosis can ‘raise awareness and encourage women to seek medical help.’

The difficulties surrounding diagnosis are often highlighted by affected women. The ComPaRe cohort has provided a wealth of insightful testimonies, revealing that patients typically consult around eight healthcare professionals, spanning 3 to 4 different specialties, before receiving a diagnosis.

If you have questions or believe you have encountered misinformation, feel free to reach out to us at [email protected]. We are also active on X, where you can follow us @verif_TF1LCI.

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