After completing a biology degree at Paris VI, a DEA in food science and nutrition, and obtaining an engineering degree in agri-food, Valérie held positions in Research and Development in international agri-food groups for over 30 years. She led R&D teams in product innovation and research in nutrition and health benefits. Valérie notably directed innovation programs in infant nutrition and women's health at Danone Nutricia in the Netherlands. As General Director of R&D and Quality for the Danone group in Africa, she worked extensively with her team to implement scientific programs aimed at improving the nutrition and health of women and young children.
The Foundation was established in January 2021 through the collaboration of the patient association ENDOmind, under the auspices of the Foundation for Medical Research. ENDOmind was already advocating for patient support and raising awareness of the disease, but research remained a limiting factor. Despite endometriosis being characterized in 1860, its mechanisms and origins remain unknown. Indeed, there are no precise figures on endometriosis, its prevalence, its evolution, and its incidence. This contributes to a significant gap, particularly in France. For example, there isn’t a single researcher dedicated solely to this pathology in France, despite knowing that 2,000,000 to 4,000,000 women are affected. Consequently, the overarching framework of the Foundation since its inception has been to accelerate research. To fulfill this mission, we have focused on two main pillars.
The first pillar is funding research in the interest of patients. Researchers spend half of their time seeking funding for their work. Therefore, this funding aspect has allowed us to launch three calls for projects since the Foundation’s creation. The calls for projects are annual, and projects are reviewed by an international committee based on the scientific quality of the teams, the alignment of the project with the Foundation’s themes, and the level of innovation. The second pillar is information and awareness. Last year, we conducted an Ipsos survey, which revealed that 83% of French people are aware of endometriosis, but the actual understanding of the disease remains limited, often being qualified as simply menstrual pain. That’s why the Foundation must become a reference for scientific and medical information for all audiences. Here, the idea is not to state the obvious but rather to open new doors.
Today, women’s access to knowledge mainly occurs through social media. For the general public, it’s essential to provide rational, verified, and educational information. It’s also crucial to provide such tools to researchers so that they understand the scientific significance of this topic. Healthcare professionals remain a major focus, with insufficient training in this area, only integrated into medical curricula 2 to 4 years ago. We can notably work with first-line healthcare professionals, such as midwives and gynecologists in private practice, as well as general practitioners and pharmacists. Institutions are also targeted, despite a national strategy already in place heavily driven by ENDOmind, requiring continuous awareness to act effectively. Finally, after breaking the taboo of endometriosis in the private sphere, we wanted to break it in the professional sphere by engaging with businesses.
Last year, we realized that awareness and funding were insufficient to accelerate research. Indeed, the number of candidate projects was too high. Therefore, we prioritized support and funding for young researchers, right at the beginning of their careers, to encourage them to work on the pathology. Our other lines of thought were: how to stimulate more scientific debates to generate new ideas? How to support researchers in achieving methodological excellence? Consequently, we decided to act on the entire research chain.
The pain experienced by women has historically been normalized by researchers and predominantly male doctors in the past. Endometriosis is complex because symptoms do not always correspond to the severity of the lesions. For example, some women may have lesions without experiencing pain and only discover their endometriosis at the age of 45! Conversely, a woman’s quality of life can be extremely degraded without presenting many lesions. Sometimes, lesions are not even clearly visible on imaging, leading to diagnostic errors. Ultimately, regardless of the severity of the lesions, the most important factors are the symptoms and the quality of life of women. However, doctors often focus on the severity of the lesions rather than the symptoms and the patient’s quality of life, thus neglecting the pain and fatigue experienced.
This battle is societal, far beyond being merely medical. The pains associated with endometriosis occur during menstruation, ovulation, as well as premenstrual and post-menstrual syndromes. Over time, pelvic-perineal hypersensitivity develops, making the pain almost constant. Therefore, the primary challenge is to detect endometriosis as early as possible. Moreover, the pains can manifest as chronic fatigue, lower back pain, leg pain, digestive and/or urinary disorders, and pain during intercourse. Over 80% of women suffering from this disease report a deterioration in their quality of life, which can lead to social isolation and depression. Fertility is also greatly affected, with endometriosis being the leading cause of infertility in women.
Regarding the professional context, there needs to be a liberated discourse. Our surveys show that more than 60% of women either do not talk about it at all or only discuss it with their colleagues but not with their managers or occupational physicians. There is truly a blind spot within companies due to women’s fear of being stigmatized and restricted in their careers. Moreover, endometriosis can lead to absenteeism, even though 89% of affected women come to work despite the pain. In this context, there is a decrease in productivity, concentration, and immense fatigue. This lack of productivity leads to a lot of guilt for women, thus trapping them in a vicious cycle.
Sociologist Alice Romerio conducted a study a few years ago, which shows that 1/4 of women affected by endometriosis have given up their careers. This phenomenon can even lead to the precarious situation of women since an Australian study shows that 14% of women have been fired because of the condition. Alice Romerio’s study also shows that 12% of affected women express having been negatively affected. When women affected by endometriosis give up their careers, they often prefer to turn to self-employment. However, self-employment when one is alone and ill can be complicated, with less effective social coverage.
There are treatments even though this disease cannot be cured. There are “first-line treatments,” such as painkillers, which can sometimes be very potent, as in the case of opioid derivatives. The most effective first-line treatment today is the suppression of menstruation. Indeed, the lesions cause inflammation and therefore pain during menstruation. To stop menstruation, there are hormonal treatments, such as continuous birth control pills. In 60 to 70% of cases, this type of treatment alleviates the symptoms of endometriosis. However, these treatments can have side effects such as weight gain or depression. Even though hormonal treatment is the most effective, many young women are reluctant to it. Faced with this, doctors can find themselves at a loss.
What must be understood with this chronic inflammatory disease is that a multidisciplinary approach must be implemented. The patient plays a key role in finding suitable solutions. For example, improving lifestyle habits, including rest and an anti-inflammatory diet, is recommended. Engaging in gentle physical activities is also important to prevent adhesions caused by inflammation. It is the immobility caused by these adhesions that partly triggers the pain. Approaches such as acupuncture, sophrology, and psychology can help reduce anxiety and pain. It is crucial to inform women about these different options to guide them in their management journey.
More than 60% of women do not speak out about their condition, creating a blind spot for businesses. Beyond being a medical issue, it is a societal issue, as it represents a true factor of inequality. Indeed, there are specificities of women’s health that must be taken into account. The report of the Senate Delegation for Women’s Rights contains a sentence that illustrates this well: “to differentiate is not to stigmatize.” Indeed, menstrual health, present throughout women’s professional lives, can lead to absenteeism as early as during their studies. Therefore, the first message of the manifesto is that business leaders need to be made aware of menstrual health and endometriosis. The second thing is to highlight our ENDOpro program to enable companies to understand the extent of endometriosis, through a survey that reflects the reality of the disease among their employees. Showing them how to act is not only about improving the quality of life of affected women but also about maintaining the company’s productivity. Doing nothing risks losing female talent within the teams. Measures such as flexible working hours, workplace adjustments, and coverage of specific treatments by health insurance can help retain these talents. The essential message is to alert business leaders to this reality and urge them to take action.
Our program offers three main benefits: firstly, it improves the quality of life of women within the company by providing tailored solutions. Secondly, it allows companies to support research, as it is designed as a counterpart to corporate philanthropy. Finally, it enables the acquisition of previously unavailable quantitative data. This program thus contributes to creating a virtuous circle. In terms of implementation, it is divided into four parts. The first involves raising awareness among management, occupational physicians, and executives about the disease, combining medical expertise with patient experience. Next, a quantitative survey, developed with experts and patients, is conducted to measure the impact of endometriosis within the company and gather women’s needs. This anonymized survey, administered by a specialized institute, achieved a participation rate of 20%, revealing that 13% of women are affected or suspected of having endometriosis, and 9% are caregivers. The third step involves assisting companies in implementing tailored solutions, leveraging our network of experts. Finally, the program aims to create a label to encourage companies to become “endoresponsible”.
Currently, we are partnering with General Electric Healthcare on the third stage of our program, which involves implementing solutions within the company. As a company highly engaged in imaging and healthcare, and having already worked on the subject of breast cancer, it was natural for them to continue their work on endometriosis. We have been working with this company for 2 years already, through awareness-raising and informational videos, and now with the ENDOpro program. Another example is that we will be implementing the program at Nuxe. Indeed, it’s a company with 80% female employees. We are also in discussions with other companies, with quite different profiles, but all sharing the same responsibility for women’s health and combating inequalities.
As Prisca Thévenot, a former parliamentarian, once said, endometriosis is the Trojan horse of women’s health. Indeed, women’s health, because it is specific, leads to inequalities. Recently, a report from the World Economic Forum estimated the cost of not addressing women’s health issues (including endometriosis and menopause) at $1 trillion. If we realize that inequalities are costly, this might prompt some changes! We should also conduct studies on the strength and skills that women with the disease develop, as some of these women have truly impressive resilience journeys during which they have developed survival strategies, intelligence, and great strength.
Once again, I think that social media encompass both the worst and the best. Indeed, it can be a tool to better understand and address everyone. It has allowed young women to become aware that pain is not normal. This deconstruction is very important and must be done through social media, as well as in schools, colleges, high schools, and companies. Ultimately, action must be taken wherever women are found and this issue must be addressed, as it remains something mysterious and distant. Women always wonder if they are “in enough pain” to speak up. There is a form of minimization and self-censorship. So, that’s where we need to start, by liberating the speech of future generations so that they develop the right reflexes regarding endometriosis.
It is necessary to open and maintain conversations around the subject to continue to liberate speech and truly face the reality of the condition and its consequences. This is what will allow progress in its consideration and management. This is the role of the Foundation and patient associations, but I would also like to say that it is everyone’s role because we are all affected, directly or indirectly.
