Laura Lequeu is 25 years old and founded the first Belgian association expert in endometriosis “Toi Mon Endo”, herself a victim of this disease.
- The Belgian association expert in endometriosis aims to “raise visibility, raise awareness, bring together and advocate around endometriosis”.
- The Royal College of French-speaking Obstetrician-Gynecologists in Belgium is one of the partners.
- As a reminder, endometriosis affects 1 in 10 women worldwide.
His journey started early and quite clearly. As if his destiny was all mapped out.
The ordeal began at the dawn of his 13th birthday. Between waterfalls and beautiful landscapes, surrounded by her parents, on vacation, excruciating pain occurs, unbearable for Laura to the point that her father had to carry her to the family vehicle. A spill of blood… The first period!
“ At first we tell ourselves that it’s normal to have pain, that it’s just the body that starts up “, the young woman wanted to reassure herself. Except that she quickly consulted her mother’s gynecologist, then a second, a third… in total 21 health professionals related to endometriosis (gynecologists, gastroenterologists, etc.) were consulted from the age of 13 to the age of 19. Trying to understand his pain which regularly took him to the emergency room: “ Everyone told me that it was completely normal, that I was probably too cozy. I was even told once that if I had pain during sex it was probably because I didn’t love my boyfriend enough and that it was my body trying to make me understand that. »
She was sadly known for being the girl who every time she had her period, fainted, left classes, and stayed bedridden compared to her classmates who did not suffer as much. She therefore began to document herself on the internet by typing her symptoms into search engines: “ This is where I discovered the word endometriosis. Among the 21 doctors consulted, not a single one had mentioned this term. I will remember all my life how happy I was to find a disease that matched all my symptoms exactly, which is paradoxical, but I could no longer bear not understanding where my chronic pain was coming from. »
“Ultimately endometriosis changes all social life, it really turns life upside down…”
Unfortunately, like nearly 80% of women with a superficial form of endometriosis, her imaging tests showed nothing. The cold shower. Her doctor prescribed perineal physiotherapy for relief: “ Typically when all my friends from university were going to have drinks after classes, I was going to do perineal physiotherapy… Ultimately endometriosis changes all social life, it really turns life upside down… And at this stage I still had no diagnosis, physiotherapy was prescribed to me to “relieve” me, which actually had nothing to do with it. exchange. I just felt even more lost in diagnostic wandering », confides Laura.
7 years of suffering. 7 years of wandering. 7 years of despair. Period pains are mentioned without forgetting that the founder of the Toi Mon Endo association had other associated problems: digestive problems, urinary problems, pain during intercourse as well.
“ During my attacks I had a stabbing sensation that gave me chills, attacks of great intensity which ended in diarrhea… she said before telling an anecdote. My teachers knew I was going to pass out during my period and thought I was doing it to miss class. So they had anticipated by giving me a monthly punishment notebook. It was extremely violent. No teacher has ever supported me. I was swimming, and the same thing, I couldn’t attend classes, especially as it was heavy and painful. Over time, I developed anxiety when my period arrived for 7 years. »
“I was no longer ‘Laura the crazy girl who exaggerates during her period’”
At 19, she accepted exploratory surgery, a laparoscopy: “ When I woke up, the doctor came to see me and said ‘Laura you did well, you have endometriosis’. I cried with joy, with relief. I was no longer ‘Laura the crazy girl who exaggerates during her period’. »
Verdict: superficial endometriosis, which over time will become very infiltrative, very aggressive and stage 4.
Following the diagnosis, she tried as best she could to raise awareness among her friends and comrades about endometriosis, but she quickly realized the obvious: no one knew about the disease: “ If the teachers reacted this way it is surely because they had no knowledge. » Even more serious, according to her, is the lack of content on the part of the Belgian government: “ Even the government website, to this day, does not have a page dedicated to endometriosis. »
As a political science student, she wondered how she could move the lines. And why not create an association?
“100% of the comments were those of women, young women suffering from the disease or having the same symptoms”
“ I started during confinement, on YouTube and 100% of the comments were those of women, young women suffering from the disease or having the same symptoms. Then followed Instagram, where speech was released more freely, with great commitment, a strong community. Very quickly I was able to put in place a legal framework and receive subsidies and above all make myself heard thanks to social networks. »
Of public health interest, You My Endo aims to be a reference and expert in endometriosis. An association close to its community, optimistic, friendly but above all caring and educational: “ I contacted the press, politicians, the media and the Belgian government. I am often in debate with politicians » which are sometimes for, sometimes against. The whole challenge of the association is in the recognition of the disease as being an illness in the same way as cancer.
“ Now, I raise awareness in schools through Toi mon Endo, we offer workshops, we create brochures like the last one recently done with the Royal College of Gynecologists of Belgium on diagnosis, we participate in events, in before -firsts… But what we mainly do is political and media lobbying! »
Utopian, but not impossible, Laura Lequeu’s greatest wish would be a treatment to cure this disease.