The EndoFrance association has just published a major survey which sheds light on the different aspects of the journey and life of women with endometriosis.
Affecting one in ten women in France (approximately 1.5 to 2.5 million women of reproductive age), infometriosis is not to be taken lightly. Little known to the general public, this inflammatory pathology which is characterized by the presence of endometrial tissue outside the uterus, which can cause infertility and pelvic pain. is there. The average age of the first signs is generally around 24 years.
Very often underdiagnosed, the disease leaves many women in complete blur. EndoFrance (French association for the fight against endometriosis), thanks to a major survey on the journey and life of these patients, carried out in partnership with the Gedeon Richter laboratory and Ipsos, highlights many results which serve to better understand endometriosis.
1,600 women affected by this scourge, 100 spouses, as well as 1,004 French people aged 18 or over and from the "general public", responded to the survey.
"This is the first survey of this magnitude, dealing with the general public's knowledge of endometriosis, but above all with the care, quality of life and patient journey. This gives us a fairly clear picture of the situation in 2020", explains in a press release Yasmine Candau, president of EndoFrance.
In the general public sample, 83% said they had heard of endometriosis before, but only 50% of them consider that they see what it is all about. An unvarnished reality, which clearly shows that the subject of endometriosis must be even more in the media.
The impact of this disease in a lifetime
Study says wait 7 years between the appearance of the first symptoms and the confirmation of a diagnosis of endometriosis!
Women interviewed said they suffered from about 4.6 common symptoms of the disease. These are: very painful periods, navel pain in the lower abdomen, chronic fatigue, or even pain experienced during sexual intercourse.
In the various testimonies, it is noted that endometriosis has a major impact in the daily life of each: sexual (55%), psychological (54%), or even physical (50%). And for 65% of active women, the disease has a real impact on their well-being at work. Spouses feel concern, understanding and compassion. Some people experience negative feelings like the desire to be free to do what they want or to have sex with another person. Still others even consider that their spouse is damaging their social relationships and asks them for more help than they really need.
Endometriosis also affects physical and intellectual ability to work (62%) and hinders getting up in the morning.
Another complication: 1 in 2 women say they have already had difficulty getting pregnant. 1/3 used PMA and half resulted in pregnancy.
A long course of care
For women with endometriosis, the two popular measures to improve their lives are: improving the training of health professionals as well as the creation of expert centers.
And nearly 8 out of 10 women say they prefer to be treated in a specialized center, even far from their home.
The first popular treatment to reduce the deleterious effects of the disease is taking painkillers. 66% of women receive treatment (including 45% on hormone therapy), and 62% have already had at least one operation (especially patients with deep endometriosis or who were diagnosed more than 10 years ago).