Endometriosis: "Endometriosis has a way of scaring people away..."

Hello Marie-Rose, thank you for agreeing to share your story with us on Carenity!

First of all, could you tell us a little bit about yourself?

I'm just your average woman, who became an activist in her own health because it was either that or no proper care. 

Endometriosis can take a long time to diagnose. How long did it take in your case? Did you do any research on your own to learn more about the disease? 

I must have seen a dozen doctors and it took me 15 years to be diagnosed. In the end, it was Dr. Google who made the diagnosis 2.5 years before anyone else and then answered my initial questions.

Could you describe the endometriosis symptoms you experienced?

I have had the following symptoms: painful periods, pain during intercourse, pain during defecation, neuropathic pain, and hypertonic pelvic floor.

What care have you received? Are you satisfied with it?

My treatment has been satisfactory since I set up a personalised programme. Today, I follow a hybrid treatment between conventional and natural medicine.

What is, or has been, the impact of endometriosis on your personal and professional life? 

Endometriosis has a way of scaring people away. You realise that people don't understand what a chronic illness is. I also lost my job when the disease flared up.

You are considered to be a "patient expert". Could you describe what the role of "patient expert" entails in France? Why did you want to take on this role?

In France, the term "patient expert" means that you've become an expert in your illness. Above all, it means that you are no longer subjected to your medical journey but become an actor in it. Some people then choose whether or not to share their experience with others. Personally, I am keen to help enable everyone to be independent in the face of chronic illness. This was the aim of my book "Endométriose : ce que les autres pays ont à nous apprendre" ("Endometriosis: What other countries have to teach us"), to explain what happens in our bodies and to propose solutions to be implemented in our daily lives.

You are the author of two books "Endo & Sexo" and "Endometriosis: What other countries have to teach us". Could you tell us about them? 

"Endo & sexo" is the first book to look at endometriosis pain: where does it come from? What can you do to have a fulfilling sex life with endometriosis? As for "Endometriosis: What other countries have to teach us", the idea was to become aware of the myths surrounding endometriosis, which are often cultural, and to refocus on the scientific data.

You can find both of my books in bookstores in France or online.

You also host a podcast in French called "Endometriosis, mon amour" ("Endometriosis, my love"). What topics do you cover? What messages do you want to convey through your episodes? Do you interview patients living with endometriosis?

On my podcast (in French), I try to make patients' voices heard. Women living with endometriosis respond to calls for testimonials that I post on my social media accounts. Each episode looks at one aspect of endometriosis and how we experience it. I wanted to examine our emotions about the disease.

As a "patient expert" and an active social media user, women living with endometriosis must confide in you frequently. What messages or topics come up the most?

What I hear most often is that doctors don't take women's symptoms seriously. In my role as a "patient expert" I'm constantly redirecting patients to a few doctors who finally agree to "acknowledge" that endometriosis exists. In my opinion, we need to be talking more about how endometriosis is still considered to be a psychosomatic illness in many countries.

What do you think social media, health forums, and podcasts bring to patients in terms of disease management? Do you think it's important to keep informed about your condition?

The internet makes it possible to disseminate information to as many people as possible and therefore to democratise health. Of course, you have to be careful about the sources, but the internet allows you to become an actor in your own health journey.

Did you know about Carenity before? What do you think of it? 

I have just discovered Carenity, and I find it positive to have a community that enables information sharing.

What advice would you share with other Carenity members living with endometriosis? 

Be an informed patient!

Many thanks to Mary-Rose for sharing her story with us on Carenity! 

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