You might have come across this statement in March. Endometriosis is a disease that affects 1 in 10 people, however it remains relatively unknown up to date. This is exactly what we, Vera Esmeralda Frederickx and Valerie Clinkemalie, are trying to change through our non-profit organisation Behind Endo (Stories)! Both of us are endometriosis patients who were diagnosed four years ago. Since we experienced first-hand how little knowledge exists about endometriosis, we decided to officially establish our organisation in 2021, which provides us with greater involvement in engaging with policymakers.
Before we continue, let’s first explain what endometriosis actually is. Endometriosis is a chronic disease in which foreign tissue can be found throughout the body, for instance on your diaphragm and lungs, but mainly in the abdominal cavity, on and surrounding the ovaries, bladder, and intestines. This causes sticking of organs and inflammatory reactions. In many women, this tissue is sensitive to hormones, which can manifest in very painful menstrual symptoms and fertility problems, among other things. However, many women also experience pain every day of the month due to the affected organs and nerves.
The definition according to the World Health Organisation (WHO):
“Endometriosis is a chronic disease in which tissue that resembles the lining of the uterus (endometrium) grows outside the uterus.”
The condition affects approximately 190 million or 1 in 10 reproductive-age women and girls worldwide (WHO, 2O23).
By hearing patients’ stories, we even suspect that this disease affects 1 in 7 people. Quite a lot, right? When you look at it that way, it occurs as often as diabetes. However, it is still relatively unknown to the general public and in the medical world…
PHOTO CAMPAIGN ‘GIVE ENDOMETRIOSIS A FACE’
That is what we tried to do in March. March is the awareness month for endometriosis. Various patient organizations worldwide organize actions and share extensive information on this disease. How do we tackle this with our Flemish non-profit organization Behind Endo (Stories)? Firstly, by a powerful and compelling photo campaign!
Every day, throughout the month of March, we posted a black and white photo of an endometriosis patient with a quote from their story on our website and social media channels. Why? Because every person has his/her own story and journey, and endometriosis is experienced differently by everyone. Some people have extreme menstrual pain, while others hardly experience pain or have pain every day of the month. Therefore, endometriosis is difficult to diagnose. By sharing patients’ stories, we hope to provide recognition as well as acknowledgement. Acknowledgment is something that often lacks in this context. Many people are searching for years for a diagnosis while they are meanwhile confronted with medical gaslighting, where some doctors dismiss the symptoms and make people feel like their pain is not real. In this respect, recognition is of immense importance. Why? Because our pain is real! We want to provide this recognition of the disease not only to other endometriosis patients but also to the general public, medical care and policymakers.
How did we proceed? For our campaign, we planned two photoshoots. Both were fully booked very quickly. This showed us how big the need was to organize this campaign and share and talk about it together. Even though it was a step out of many people’s comfort zones, and people even came from the Netherlands for it. This clearly demonstrates the need for patients to talk openly about this disease and to show their environment the suffering that this causes on a physical and emotional level in their daily lives.
The photoshoots themselves were unique to experience as well as emotional at times.
“I want to do everything in my power to spare the next generations from this suffering. Everything starts with more awareness, understanding, validation, and knowledge! Most people don’t know what we have to endure, and endometriosis (if it is even recognized) is often still considered a “painful period”. No, we are chronically ill! This disease has a huge impact on the rest of our lives. I hope that no one will ever again be laughed at by a doctor because they are in excruciating pain!”, says Yamina Gubbi, who participated in the first photoshoot in Merchtem.”
MEMBER PLATFORM ‘SURVIVING ENDOMETRIOSIS’
The second project alongside this photo campaign is our member platform “Surviving Endo”. Here, we aim to create a warm community for endometriosis patients where we can learn to support ourselves in our daily lives in gentle, natural ways. We do this not alone, but together with other experts. We provide tips and tools that can work complementary to a patient’s treatment plan. It is not a quick-fix to cure someone’s endometriosis symptoms, but an invitation to explore other possibilities to find some relief if surgery is not a direct option or does not provide added value for pain relief.
Valerie Clinkemalie & Vera Esmeralda Frederickx
- https://nl.wikipedia.org/wiki/Endometriose (deze pagina werd oa geschreven door een groot deel van de NL endometriosepatiënten die nu samenwerken met de Gynaecologische vereniging om betere kennis te verspreiden onder de NL gynae’s)