International Library of Experiences

Reading & Approach Guide

Each of these stories addresses questions that science, society, and health systems are still learning to ask.

How to understand this library

The Endometriosis Global Network considers personal stories to be a valuable social and cultural heritage.

Each story housed here reflects a genuine lived experience. Some have been written by patients; others by family members, healthcare professionals, researchers, students, organization leaders, companies, or public institutions. Although their backgrounds vary, they share a singular aim: deepening our collective understanding of life with endometriosis and other chronic conditions.

This Library does not seek to gather extraordinary tales, but rather to preserve experiences that can transform into collective learning.

We believe that lived experience is a form of knowledge in its own right. When shared with honesty, respect, and context, it sparks new questions, guides research, refines clinical practice, shapes public policy, and lights the way for those who will walk this path tomorrow.

For this reason, we invite you to approach each story with intellectual curiosity, human sensitivity, and respect for those who have chosen to share a part of their lives.

OUR COMMITMENT

The Endometriosis Global Network is committed to:

Respecting the identity and privacy of all participants.
Requesting authorization whenever a story requires editing.
Clearly distinguishing between personal experience and scientific evidence.
Preserving a space free from violence, discrimination, and misinformation.
Promoting respectful dialogue among patients, professionals, and institutions.

Likewise, we reserve the right not to publish, and to use the channels we deem appropriate to share the narrative.
Additionally, we reserve the right to decline publication or utilize the channels we deem most appropriate to share the narrative.
Please note that Life Stories are published anonymously to comply fully with European Union Data Privacy Regulations. Example: "Testimonial from M., 34 years old, Spain"

Who can participate?

We invite you to share your experience if you are:

a patient.
a family member or caregiver.
a healthcare professional.
a researcher or student.
an educator.
the head of a social organization.
a company committed to occupational health.
a public administration official or health policy maker.
anyone whose experience can contribute to collective learning.

We are not looking for experts. We are looking for people willing to share what they have learned.

Qué tipo de Historias Buscamos?

We look for authentic experiences.
We are not looking for perfect stories.
We are not looking for heroes. We are not looking for victims.

You can write about:

How you manage your life
A conversation that changed the way you understand the disease
A good professional practice
A system failure that deserves to be reviewed
A resource that helped
A question that still has no answer
A work experience
A research project
A personal lesson.

Every experience can contribute knowledge when shared with honesty and respect.

Before submitting your story

We invite you to reflect on a few questions.

You don't need to answer them all.

They are simply here to help guide your writing.

What happened?
What did you learn?
What would you change if you could go back?
What resources were important?
What questions remain open?
What would you want those who have never lived this experience to understand?
How does your experience help other families?
What can your experience contribute to healthcare professionals?
What matters to you when you are welcomed at a hospital?