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“My experience showed me how deeply endometriosis can affect both physical health and quality of life”
According to the World Health Organization (WHO), endometriosis is a chronic condition that affects around 10 percent of women and girls of reproductive age worldwide, which is roughly 190 million people. It is more than just bad period pain. For many, it causes persistent and sometimes severe pain and can be a major reason for infertility. Lydia-Haana Faris, project manager at the Fundació Sant Joan de Déu in Barcelona and co-leading work on Work Package 3 within the INTEGRATE-LMedC project, explains:
“Despite affecting roughly one in ten women of reproductive age, endometriosis remains significantly underdiagnosed and under-researched. Many patients experience long delays before receiving a diagnosis, sometimes lasting many years.”
Women with endometriosis often experience intense pain during menstruation, sexual activity, bowel movements or urination. Other symptoms can include fatigue, nausea, depression and anxiety. These challenges can make it difficult to work, study or enjoy everyday life. The disease occurs when tissue similar to the lining of the uterus grows outside the uterus, often on or around the reproductive organs. Faris adds:
“Because of its high prevalence, the significant impact it has on quality of life and the limited treatment options currently available, endometriosis is considered an area with major unmet medical needs.”
Getting a diagnosis can take years. Many women are told that their pain is normal, which delays proper treatment and leaves them uncertain and suffering. One patient shares:
“Ten years, multiple doctors (of all genders), dismissed symptoms…and the answer was always relax, it will pass. Living with endometriosis shows you how deeply sexism runs and how broken the medical system can be: researchers chasing debunked theories, weak findings dressed up as breakthroughs, doctors confidently repeating outdated information.
“The gap between what is known and what is practiced is where people suffer. It can feel like being trapped in a black hole. And yet, there is hope in the people who push back, share experiences and the professionals who want to change the system. That’s not a small thing. The mess is real, but so is the momentum.”
Research is essential to improving diagnosis and treatment. Understanding how endometriosis develops and finding ways to diagnose it quickly can greatly improve quality of life for patients. Another patient shares her experience:
“I have lived with endometriosis for many years and it has had a major impact on my daily life, causing severe pain, heavy bleeding and fatigue. It also affected my fertility and I had to undergo IVF treatment in order to become pregnant.
“My experience showed me how deeply endometriosis can affect both physical health and quality of life. More research is urgently needed to improve diagnosis, treatment and awareness for the many women living with this condition.”
Framework for the future: the INTEGRATE-LMedC project
A promising way to mobilise research is through large medical cohort studies, which follow groups of people with the disease over many years. These studies can reveal genetic factors, how symptoms vary and which treatments are most effective.
Large medical cohorts are extremely valuable because, as Faris notes, “they allow researchers to follow large groups of individuals over time, collect diverse types of data, and identify patterns or risk factors that smaller studies might not capture.”
The INTEGRATE-LMedC project, coordinated by BBMRI-ERIC and led by BBMRI.no, is creating a framework for building these large medical cohorts across Europe. Within this project, the team Faris co-leads conducted a detailed gap analysis to map existing cohorts and identify areas with unmet medical needs. Endometriosis was highlighted as one of the priority conditions that could benefit from large-scale cohort data.
The gap analysis called on medical experts from across Europe through a two round Delphi study and follow up interviews. In total, 73 experts participated in the surveys and 20 experts contributed to the interviews. Alongside endometriosis, input highlighted several conditions where large medical cohort data could help improve research and care, including depression and Alzheimer’s disease.
The analysis also included a review of scientific literature published between 2019 and 2024 to map existing large medical cohorts studying these conditions. Faris explains:
“Between 2019 and 2024, we identified only one large medical cohort focusing on endometriosis. For comparison, we found 16 for Alzheimer’s disease and 38 for depression. This clearly highlights an important gap in the research landscape.”
The results of this work will help guide future research efforts and support research infrastructures to make better use of cohort data and biological samples, ultimately contributing to improved understanding and care for conditions such as endometriosis. As Faris explains:
“Projects like the INTEGRATE-LMedC highlight existing gaps in the research landscape and encourage collaboration across Europe between institutions and scientists.
“With improved data infrastructures, greater investment in research and continued collaboration between scientists, clinicians and patient communities, there is real potential to improve diagnosis, develop more effective treatments and ultimately improve the quality of life for people living with endometriosis.”
As research and public awareness grow, Faris, and the 190 million endometriosis sufferes, have reason for optimism:
“Personally and professionally, what gives me hope is that the topic is being discussed more and more. From a research perspective, endometriosis is now receiving more attention in both healthcare and scientific communities. Patient advocacy and awareness initiatives are helping bring this topic further into the public conversation.” Faris closes.
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