Overlooked for many years, endometriosis public awareness is rather new. The new light that was shed on the disease broke the taboo, and allowed the launch of initiatives aiming at improving patient care. Additionally, investments in endometriosis research have led to innovations in both diagnosis and treatment. In this article, Alcimed shares an overview of the developments that allowed to lift the taboos surrounding endometriosis, and the challenges that research still have to overcome.
What is endometriosis?
Endometriosis is a chronic gynecological disease, linked to the menstrual cycle, which remained a taboo for too long. Today, we know that endometriosis is the leading cause of infertility in France, affecting 1 in 10 women – representing 190 million women worldwide – and that the average delay to diagnosis is 7 years.
The end of a taboo surrounding endometriosis
Endometriosis has long been a misunderstood disease, but it has gradually gained more visibility as people become more outspoken on the issue. The last decade was a turning point in the way endometriosis is perceived, and more and more efforts are being made to fight it.
The beginnings of endometriosis awareness and political mobilization
Endometriosis began to make headlines in 2016. In March of that year, a first national information and awareness campaign with the slogan “Menstruation is natural, not pain” took place, stemming from an agreement signed between associations, doctors and the French Ministry of Education,
The aim is to reach a wide audience, from healthcare professionals to teenagers, in order to increase awareness of the topic of endometriosis: On the one hand, for healthcare professionals to be aware and trained to identify the disease; and on the other, to make patients seek help for pain during their menstrual cycle (often one of the first and main symptoms).
Dedicated social media accounts are also created (@infoendometriose, @superendogirl, @monendo etc…), associations are emerging (EndoFrance now has almost 3,000 members) and celebrities are speaking out on the subject.
Over the years, endometriosis has also become more present in the workplace, encouraging employers to make adjustments in order to reduce the burden of the disease, by limiting strain inherent in the disease, for example by limiting standing workstations.
Integrating endometriosis into medical training
A few years after the first campaign, the fight for disease awareness continues to gain momentum. On September 2, 2020, endometriosis was officially included in medical school curriculum in France. Previously, only one hour was dedicated to it in 6 years of training.
Raising awareness of endometriosis among the healthcare professionals of tomorrow is a major stake, especially when we know that the symptoms of the disease are numerous (pelvic pain, nausea, fatigue, etc.), poorly identified and subjective. This subjectivity has long hampered the diagnostic process, as associating menstruation with pain was normal.
The evolution of endometriosis as a national issue
In January 2022, a national strategy to fight endometriosis was launched, which marks a strong realization of the challenges associated by the disease.
The strategy aims to improve patients’ quality of life, while reducing the backlog in diagnosis and treatment research, due to a lack of visibility.
The three pillars of the national plan are:
- Investment in endometriosis research and innovation
- Access to rapid, effective diagnosis
- National awareness of the disease
In parallel to the launch of this national strategy, severe forms of the disease are recognized as long-term conditions (LTC).
Progress has been made, but there is still a long way to go. Two of the main challenges are to speed up diagnosis and find a curative treatment.
What are the remaining challenges for endometriosis research?
Faster diagnosis of endometriosis
The diagnostic process of endometriosis is long and complex, with numerous tests to be carried out, and the multiple forms of the disease making rapid diagnoses more difficult.
Digital platforms have been developed to provide individualized support for endometriosis patients. An EndoScore generated by these digital platforms (e.g. LunaEndoScore, EndoZiwig, EasyEndo…) helps screening by calculating a risk score that determine the probability of suffering from endometriosis. However, until now, there had been no alternative to lengthy conventional screening by ultrasound, MRI, etc.
Recently, a salivary test providing an endometriosis diagnosis in just a few days obtained CE marking, with a the aim of being marketed in Europe. This test is called Ziwig Endotest and is based on the sequencing of salivary microRNAs. Of the 2,600 known salivary microRNAs, 109 are biomarkers of endometriosis. This test will make detecting all forms of endometriosis possible, from superficial to deep forms.
This constitutes a major breakthrough in the fight against endometriosis. In fact, rapid diagnosis would enable women suffering from endometriosis to be treated as early as possible, thereby reducing the risk of infertility, which increases as the disease progresses.
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Developing solutions for less burdensome treatment
When it comes to treatment, there are a variety of options but none is curative. Additionally, whether it is surgery or hormone therapy, treatments are burdensome.
In recent years, alternatives treatments have been studied: it includes minimally invasive surgery for rectal endometriosis, using high-intensity focused ultrasound (HIFU). This treatment consists of devitalizing the nodules caused by the disease, in just a few minutes, by using an endorectal probe.
Effective and associated with low burden, HIFU surgery provides new opportunities in the fight against endometriosis. However, this treatment is not yet suitable for all forms of endometriosis.
The growing visibility given to endometriosis is raising collective awareness of the challenges associated with the disease. France, and other countries, are focusing on the search for conclusive diagnoses and treatments. The effort invested in this field has led to major breakthroughs, even if many things are still misunderstood about the disease. Management of women suffering from endometriosis is still a major unmet need, on which Alcimed is ready to support you. Contact our team!
About the author,
Agnès, Consultant in Alcimed’s Life Sciences team in France
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