CORE EXHIBITION → WHAT IS ENDO

Understanding ENDOmetriosis

What happens when uterine-like cells grow where they don’t belong? Discover what endometriosis is, how it manifests, and the challenges it brings to millions worldwide.

The basics

Endometriosis affects approximately 10% of people born with a uterus worldwide—about 250,000 in Sweden alone. Despite its prevalence, it often takes 5–7 years to receive a diagnosis, leaving many to endure pain, fatigue, and other debilitating symptoms without answers. By understanding what endometriosis is and how it impacts the body, we can break the silence around this condition and improve the lives of those affected.

Explore the key areas below to learn more.

  • Endometriosis is a condition where cells similar to the uterine lining grow outside the uterus, forming lesions in places where they don’t belong. These lesions commonly develop in areas like the ovaries, bladder, rectum, or abdominal lining, and in rare cases, other parts of the body.

    The inflammation caused by these misplaced cells can lead to scarring, adhesions, and heightened nerve sensitivity. This often results in chronic pain, fatigue, and digestive issues. Beyond the physical symptoms, endometriosis can deeply impact mental health, relationships, and the ability to work or study.

    Despite affecting people of all ages and backgrounds, endometriosis is frequently overlooked or misdiagnosed, leaving many to endure significant challenges without proper support.

  • Endometriosis symptoms vary widely and can range from mild to severe. Some people experience intense pain, while others have no symptoms at all. Common symptoms include:

    • Severe pain during menstruation, ovulation, or intercourse.

    • Pain that radiates to the back, hips, or down the legs.

    • Fatigue, nausea, and a general feeling of being unwell.

    • Digestive issues similar to IBS, like diarrhoea, constipation, or bloating.

    • Pain when urinating or during bowel movements.

    • Blood in the urine or stool during menstruation.

    • Difficulty conceiving or infertility.

    Symptoms often occur in flare-ups, with pain lasting a few days or persisting for weeks or months. Recognising these signs is a crucial step toward seeking care.

  • Getting a diagnosis for endometriosis is often a long and frustrating journey, with symptoms frequently misdiagnosed as menstrual pain, IBS, or urinary tract infections. Diagnosis typically begins with a gynaecological examination or a vaginal ultrasound, which can identify abnormalities such as endometriosis cysts on the ovaries.

    In some cases, laparoscopic surgery is necessary to confirm the condition and remove visible lesions. If treatments for other conditions don’t alleviate your symptoms, it’s essential to seek further medical advice. Trust your instincts—early diagnosis can significantly improve your quality of life.

  • While there’s no cure for endometriosis, many treatments can help manage the symptoms. What works best depends on individual needs, but common options include:

    • Pain Relief: Medications like NSAIDs to reduce inflammation and discomfort.

    • Hormonal Treatments: Such as birth control pills or progestins to regulate hormones and reduce symptoms.

    • Surgery: For severe cases, laparoscopic surgery can remove lesions and improve quality of life.

    Lifestyle adjustments, such as stress management, diet changes, and physical therapy, can also help some individuals. Effective care often involves a combination of treatments tailored to your symptoms and goals, whether it’s managing pain or planning for a family.

Artwork by Ema Eygreteau from exhibition Breaking this silence.

Advancing endometriosis care

Medical advancements are crucial in improving endometriosis care. The development of more precise diagnostic tools, like medical imaging and biomarkers, has significantly enhanced the ability to identify the condition early. Still, awareness among the public as well as healthcare professionals becomes even more important in identifying the disease.

Pioneering endometriosis care and awareness

How can surgery and awareness transform endometriosis care? Gynecological surgeon Dr. Géraldine Chauvin specializes in deep endometriosis surgery at Clinique Mutualiste de Pessac, where she combines medical expertise with advocacy. In this interview, Dr. Chauvin discusses her role as a surgeon and sheds light on the origins of endometriosis and the journey of women affected by this condition.

Passionate about raising awareness, Dr. Chauvin played a key role in the "Breaking this Silence" exhibition in Bordeaux and co-created the "Endo Talk & Yoga" program to support women with endometriosis. By emphasizing early diagnosis, better treatment options, and multidisciplinary care, she sheds light on the urgent need for change in how endometriosis is recognized and treated.

Video language: French. Automatic subtitles available.

Challenges and advances in endometriosis treatment

What changes have we seen in the prevalence of endometriosis in modern society, and what historical challenges have affected proper care? In this interview, Dr. Horace Roman, a gynecological surgeon at IFEM in Bordeaux, shares his experience in endometriosis research and treatment over the past decade. He discusses recent improvements in diagnosis and treatment, highlighting the role of medical imaging and biomarkers in better identifying the condition. Dr. Roman stresses the need for greater awareness among both healthcare professionals and the general public.

As a university professor of endometriosis surgery at Aarhus University in Denmark and co-founder of IFEM, Dr. Roman points out the significant progress made in medical education about endometriosis over the past 20 years.

Video language: French. Automatic subtitles available.

The importance of Being heard

Acknowledgement matters. How healthcare providers, society, and even language validate or dismiss symptoms can shape the experience of living with endometriosis.

The Power of Recognition

What happens when symptoms are believed—or dismissed? Ina Hallström’s research delves into how social validation, or the lack of it, profoundly impacts the daily lives of those with endometriosis. By examining patients’ experiences, she highlights the critical role of recognition in shaping emotional well-being and access to proper care.

Video language: English. Automatic subtitles available.

Speaking of endometriosis

Language matters. Ida Melander explores how discussions about endometriosis in social media, patient referrals, and medical contexts influence understanding of the condition. Her research reveals how the words we choose can validate experiences, foster connection, and break down stigma.

Video language: English. Automatic subtitles available.

Driving change

Recognising the symptoms of endometriosis early can make a world of difference. From adolescence onward, understanding the signs is key to seeking care and breaking the cycle of delayed diagnoses. Meet Swedish Barnendometriosfonden and Finnish Korenty ry, two patient organizations raising awareness around endometriosis to make a change.

Building support and awareness

Support and advocacy can change lives. Olga Haapa-aho, from the Finnish advocacy organisation Korento ry, reflects on the challenges of navigating endometriosis—from stigma and limited healthcare access to diagnosis delays. She emphasises the power of peer support, education, and workplace flexibility in improving mental well-being and quality of life for those affected.

Video language: Finnish. Automatic subtitles available.

Children with endo

Endometriosis often begins long before diagnosis. Katarina Steinfeldt Olbers, founder of Barnendometriosfonden, highlights how early symptoms are frequently dismissed as “normal period pain.” With 70% of individuals showing signs before the age of 20, she underscores the importance of raising awareness, ensuring equal care, and advocating for early diagnosis to support children and teens affected by the condition.

Video language: English. Automatic subtitles available.

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