Fibrome Info France: Our Story

In today’s blog we are delighted to hear from Angèle Mbarga the founder of Fibrome Info France. Angèle shares her personal experience with fibroids, explains why she started Fibrome Info France, talks a bit about the situation in France and discusses the excellent work her organisation is doing to support women with fibroids.

I had a surgery by laparotomy in 2010. In January 2011, when creating the association Fibrome Info France, I had no idea just how vast my job would be. The only thing I was sure of was the absolute need to have a place of healing dedicated to women suffering from uterine fibroids. This shelter will be their place where they would find a sympathetic ear and be able to share their own experience in a mutual aid environment. I had the vision of a modern sisterhood where every woman physically injured and hurt in her inner self, intimacy can henceforth stop and they would be able to talk openly, place a word on her pain without any judgement. My objective was to offer to women what had so badly missed in my time when I had to face fibroids for the very first time. Fibrome Info France is my plea a distress call of a woman wrecked by the violence of fibroids.

My fibroids were out of control, disabling and hemorrhagic. My symptoms were blood clots with throbbing pelvic pains sometimes. Untimely and chaotic bleedings were my sad daily reality. My life was completely turned upside down. I had no menstrual cycle reference anymore. I had no life anyway. Fibroids were killing me softly. Periods and unusual bleeding got mixed up and caught me in an endless, disturbing and distorted cycle in a completely crazy pace. I was in hell! At office, in meetings, when hanging out with friends, in restaurants, in my own car or in common transportation, anywhere. Always this inopportune and incessant flow of blood gushing from me! There were no sanitary pads that could help me out with stopping this. Fibroids gave me no place for neither private nor professional life. It was like holding a time bomb in my womb with the difference that I had no idea when the explosion would happen.

While recovering from my surgery at hospital, I made a promise to myself to help those women with fibroids issues. They should not face the lack of information about this disease anymore. They should not go through the fibroids complications alone either. Once this idea sprouted in my mind I put all resources and forces I had to make it happen as quickly as possible. And in January 2011, Fibrome Info France was born. Our association assists through our support groups, every year we help over 1500 women to overcome their profound distress caused by this disease. Uterine fibroma is a disease that affects the woman in the depths of her intimacy and in some cases affects fertility. Its development and complications vary from one woman to another. But a widely spread cliché makes one believe that fibroids are asymptomatic hence do not require any specific care. However, witnesses and S.O.S messages received by our association prove the need for information and support of women severely exposed to this disease which has a strong consequences and significant impacts on their intimacy, their professional and social life.

Uterine fibroma is the most frequent non-cancerous tumor that affects women in childbearing age. It represents also the first cause of uterus ablation in France, over 75000 every year. Physicians who are experienced in the care of this condition are of the opinion that African-Caribbean women develop fibroids at a younger age than the average and are prone to a higher rate of recurrence as well. The specific cases of young women who might likely relapse therefore exposed to repetitive surgeries raises the question of the preservation of the uterus and fertility. As the founder of Fibrome Info France, I assess on a daily basis women’s expectations with regards to this disease in order to have a good match with our actions towards them. The key challenge for our association is the information and awareness of women about the symptoms and complications of uterine fibroids in terms of basic prevention. We also provide tangible and lasting actions to improve the care of uterine fibroids and fight against its banalization.

In 2012, our first awareness video was released as well as our first information campaign. Both were financed by myself. In 2013, with the support of the then Ministry of Women’s Rights and the Regional Council of Ile-de-France, an informational leaflet was published. We also launched our second information campaign. In 2014, in partnership with doctors who support our action we developed and informative and supportive guide for patients and for the rest of the medical corps that are still underestimating the impacts of uterine fibroids as well. Around ten centres fully dedicated to diagnose and to the care of fibroids were opened in several hospitals in Paris and in other French provinces. All of our actions aim to respond to the need for information by women suffering from uterine fibroids and the imperative requirement to guide them on their therapeutic path. Our association will turn 7 on June 30! To celebrate our achievements and alert the public about fibroids’ impacts we will hold an open house day in our premises. We invite anyone who is keen on acting for women’s health and rights to come and join us in our fight to improve the care of uterine fibroids, for the preservation of the uterus and the fertility of women suffering from fibroids.

Angèle MBARGA
Founder
Fibrome Info France

We would like to thank Angèle Mbarga for sharing her inspirational story with us and applaud her for the fantastic work she has done in establishing Fibrome Info France and providing much-needed support to women in France who have been affected by fibroids. To find out more about Fibrome Info France you can visit their website or connect with them on social media.