“La Belle is me, it's all of us. And endometriosis is the Beast, which gnaws at us”: Fleur shares her story with us

Endometriosis is a chronic disease that currently affects one to two out of ten women worldwide. Although the word seems to be loosening more and more about it, in 2021 there is still no real treatment. All these women therefore have no choice but to learn to live with it. It is this fight towards acceptance that leads Fleur, 44 years old. "Endowarrior", single mom, graphic designer and sunny woman, she expresses herself daily on social networks on the account of her association, La Belle et l'endo. Meet.

The Body Optimist: In 2020, you created an association, La Belle et l'endo, whose main subject is endometriosis. What was the trigger that led you to its creation?

Fleur T.: “I've been thinking about it for a while. I am a graphic designer and ex-photo model so the image is something that I like and social networks too. It was a world in which I was already immersed. During my last procedure last year, I was at home, I had an internal catheter that was causing me a lot of pain and I found that focusing on knitting reduced my pain considerably.

So I said to myself: "What if I shared all these things, my experience...?". It's been over 16 years since I was diagnosed so I've really seen the disease evolve over time in society, I've been through a lot and I feel justified in sharing all of this. So I created my networks and off we went! »

What does your association represent to you?

“My association is a bit like my second child. I created everything by myself. And then it is also a testimony of my personal history not only to allow me to look back on the road traveled, but also for my daughter. I am moved to say it, but when I say something on my blog, well I imagine my daughter when she is older, since currently Rose is only 6 and a half years old. In fact, I'm writing to her. I tell myself that perhaps she will understand her very special story and what we have been through.

With my community, we do not experience exactly the same thing, because endometriosis manifests itself in many ways and at very different ages. One thing is certain, this group is important to me. I sometimes wanted to stop, because it takes me at least two hours a day, but as soon as I receive a message from a subscriber, I tell myself that it is really useful and it gives me a boost. . And the support goes both ways! It's not an accomplishment, because it wasn't my life's purpose, but it's definitely a driving force. »

Precisely this support that you have the opportunity to bring to your subscribers, is it something that you would have liked to have had when you were younger?

“Totally and that's also one of the reasons why I created my page and then this association La Belle et l'endo. I had no moral support at the time. 17 years ago, endometriosis was little known. What was there? Two books on the subject? And still, they did not want. The doctors did not know too much: there was a wandering. So yes, I wanted to create comfort, a security blanket that I would have liked to be able to cling to at that time.

« La Belle c’est moi, c’est nous toutes. Et l’endométriose c’est la Bête, qui nous ronge » : Fleur nous partage son histoire

This is why I sometimes resort to laughter, to lightness even if I also know how to be serious when necessary. For example, I manage to create a certain balance by juggling the means of communication. For example, the story is more about me, Fleur everyday, products that I test, makeup and lots of little things that a woman loves and experiences. The rest of the networks are more of an associative nature and on my blog I really write about my experience, and that's what I like a lot. »

Is this name, "Beauty and the Endo", a nod to Disney's Beauty and the Beast, as one might assume? Does he mean anything in particular?

“Yes, it's the result of a long brainstorming with my best friend who works in a communication company. He knows me well. He knew I wanted something positive, related to image and beauty and of course endometriosis. This analogy with Disney was perfect.

As an endowarrior, what has been the most difficult for you in this fight against the disease?

“First I would like to say that there is a fighting side, but that's not all. Because endometriosis, there is no cure since there is no treatment, we live with it. There is no point in fighting, you have to adapt.

For me, the hardest were the times when, due to illness, I left for surgery more than 70 km from home and when I left my daughter with my parents without knowing when I was going to come back and with the fear in my stomach of never coming back. In this context, I even made a will and a letter to my daughter just in case... And I assure you that it is very painful, moreover I am still unable to read them to this day. It's a huge trauma to come to think of such things.

Having a child gave another dimension to my life. The fact of knowing that something can happen to me, it's not for me that it scares me, it's for her, to leave her an orphan..."

Photo by Sophie Thouvenin

On a daily basis and through social networks, you campaign to give visibility to endometriosis. The goal is for doctors to know more and more about the disease, in order to be better able to manage it. It is indeed on average 7 long years of medical wandering at the present time. How did you feel when your diagnosis was made?

“For me the disease was not overwhelming. It settled over time without my understanding what was happening to me since at the time, once again, we weren't talking about endometriosis. We didn't know. So it was only a word. Since I had no information, I couldn't stress as much as some women can these days, although I realize that this is just my feelings and may reassure others.

So of course I was aware that it was not normal: it is not pleasant to have an operation, to be put under artificial menopause. But in fact I was not stressed as much as if I had had all the information that we have access to today. »

Today, through and perhaps beyond the disease, how do you view yourself as a woman and as a person?

“I am a woman with all her facets: a mother, a friend, a lover, a sister, a child too. Endometriosis made me suffer a lot, but it also allowed me to learn to adapt on all levels. I am much calmer now than a few years ago. »

You also describe yourself as an "endometriosis influencer". The term influence is something we hear more and more. This is to set the trend. Of course, endometriosis is not a fad, far from it. But do you have the impression that there is a societal awareness, or at least that tongues are loosened more on this subject?

“Some unscrupulous professionals speak of a “fashionable disease”. I would rather say that yes, the more speech is freed, the more we realize that many women are affected by endometriosis. What I'm trying to send as a message is that we shouldn't feel embarrassed about it and that it doesn't stop us from loving ourselves and feeling beautiful.

I describe myself as an "endometriosis influencer", because networks are a very powerful way to communicate. I realized over time that my community is fond of my tips, my opinions on this or that product related to the disease, but also and above all to feeling good. It happened quite naturally actually. »

Thus, over the posts, Fleur tells how she improvises the Beauty of history despite her illness. At the same time, she takes the opportunity to break the taboo and raise awareness, to be able to fight. Last summer, she carried out a fundraising campaign for ComPare Endo research and managed to collect 550 euros. Even now, her association donates 20% of the revenue she obtains from the sale of certain products.

Endogirls are no longer isolated cases! It is a real community whose issues must be taken into account by society. Moreover, we advise you not to be alone and to talk about your symptoms, your pain freely, without taboos. On our forums for example.

Thanks to Fleur for answering our questions. You can follow his adventures beyond our article, on his Instagram account: @la_belle_et_l_endo. But also on his website labelleetlendo.fr and his blog.