In Europe, thousands of women live with persistent pain, repeated consultations and a lack of understanding which sometimes stretches for almost a decade: according to a survey carried out among 2,077 patients in five countries, endometriosis suffers from a diagnostic delay of 7 years, a delay which transforms each stage of the care process into a real ordeal and lastingly disrupts personal, intimate, student and professional life.
Endometriosis and late diagnosis: a journey strewn with obstacles
In France, it takes on average 6.7 years for endometriosis to be identified and confirmed. Sweden reaches ten years, and in all countries studied, patients consult several doctors before getting a clear answer.
Diagnosis methods vary according to health systems: gynecologists on the front line, radiologists more present in France, general practitioners and surgeons in the United Kingdom, surgeons in Sweden. Added to this is a persistent lack of information: only one in two French women know of the existence of the saliva test, compared to 8% in Sweden.
When the diagnosis finally arrives, 74% of women say they feel relief, but after years of trivial pain. In this context, the words of Romain Barbet, Director at Norstat responsible for the study, resonate like an alarm signal: “Behind these figures lies a dramatic reality: each year of diagnostic delay means years of misunderstood pain for patients. This investigation must serve as an electric shock“.
Insufficient care despite diagnosis
Once the disease is identified, the difficulties do not end. Patients rate their overall satisfaction with care at 6.2/10.
Treatments mainly focus on hormonal solutions and painkillers. In France, 50% of women say they have not been referred to a specialized structure. Across all countries, 9 out of 10 patients say they have faced obstacles: long waiting times, few accessible specialists, lack of professional training and persistent trivialization of menstrual pain.
According to Carole Habib, Associate Director of Sky Consulting behind the study, these blockages reveal a deeper problem: “The fact that nine out of ten patients encounter obstacles in their journey shows the scale of the challenge. It is not only about improving access to care, but also fundamentally transforming the way endometriosis is perceived and treated. There are also significant differences between the treatments offered from one country to another. This is often linked to the relationship to pain and the maturity of public opinion on the importance that should be given to this pain linked to the female cycle.“.
A disease that disrupts daily life
Endometriosis affects all aspects of life. The overall impact on quality of life is estimated at 6.9 out of 10 in Europe, and 7.3 in France. The consequences extend beyond consultations: 64% of patients give up leisure activities, 57% give up vacations, one in two women have to adapt their professional activity, and 71% of students say they have difficulty being present in class.
One in two women also report an impact on their love life and on procreation. Analyzing these results, Annabelle Hermant, Executive Director at Sky Consulting, highlights the strong expectations of women: “By giving patients a voice, this study provides valuable lessons for public and private decision-makers. It outlines concrete paths to transform an obstacle course into a more effective care course. Patients expect real listening, recognition of their symptoms and appropriate solutions. In France, even though we have come a long way, we still have a lot of work to do. In other countries, mentalities put many women in difficulty and in silent suffering“.