Endometriosis, disabling on a daily basis, soon recognized as a long-lasting disease?

ENDOMETRIOSIS – “The disease constitutes an invisible handicap with social, economic and professional consequences for the women who suffer from it.” This Thursday, January 13, two days after the announcement of the plan to fight endometriosis by Emmanuel Macron, a bill is being studied in the National Assembly aimed at having this disease recognized as a long-term disease (ALD) .

Defended by the LFI group (La France Insoumise), this proposal aims for better institutional recognition of this chronic disease affecting at least 10% of women as well as 100% coverage of the care that should benefit throughout their lives. women who suffer from it.

This is a long-standing request from associations. In July 2020, many senators and deputies sent a letter to Olivier Véran support for the Endomind association, so that endometriosis is integrated into ALD. The following month, an Endofrance column signed by some sixty medical practitioners was published in The Parisian. This invited the government to go even further than recognition as ALD.

Handicap invisible

Today, 30 diseases are classified as such, including diabetes and Parkinson’s disease. These are pathologies “the seriousness and / or chronic nature of which require prolonged treatment and particularly expensive therapy, and for which the user fee is waived”. Because endometriosis “is a chronic, progressive and incurable disease, it can be disabling and cause a prolonged and particularly expensive treatment”, notes France Insoumise, it should be included in this list.

It must be said that endometriosis, as an invisible disability, has consequences on a daily basis: “Severe forms responsible for disability in a third to half of cases”, notes LFI. “Social, economic and professional consequences for the women who are affected”, continues the group. According to the Endomind association, “80% of the people concerned feel a limitation in their daily tasks, and 40% of them who experience fertility problems”.

Fertility, privacy

“With at least one – if not two – surgeries awaiting me in 2022 in an attempt to get rid of this endometriosis, the goal of one day having a child (yes, I speak in the singular, I am reasonable) seems drowned in a thick fog, that of the medical wandering in which I found myself ”, regrets on this subject the journalist Céline Dura in a blog on Then24. “I am not the only one to experience this: endometriosis affects around 10% of women and it takes an average of 7 years to detect it”, she continues. Like her, actress Emma Roberts spoke at the end of 2020 about her fertility problems linked to endometriosis. She had chosen to freeze her oocytes.

Beyond fertility issues, the impact of endometriosis on day-to-day life can be significant.

“I have suffered from endometriosis for 30 years. This filth has destroyed a good part of my life. She prevented me from pursuing a career, she chained me to my house, she deprived me of motherhood. Because of her, I had terrible pain that kept me in bed for years. I had 4 operations to try to remove the lesions that had colonized my intestines and the rest of my abdomen. I had 4 fertilizations in vitro to try to be a mother. I had to undergo 10 years of absolutely appalling hormonal treatments ”, details Marie-Sophie Germain, author of the blog # MonEndométriose on Then24.

On sexuality too, some women must draw a line. This is what tells about his companion Emeline Vitrac, carer, in this blog. “Your boyfriend, let’s talk about it. The one who massages you until 1 in the morning because you are in crisis. The one who calls the fire department at 11 p.m. because this time the painkillers didn’t work. The one who only touches you once a month, because intercourse when you have endo, you forget. Well yes, having the impression of taking a stab that goes from the bottom of the vagina to the stomach, it’s not exciting. ”

Career impact

The careers of these women can also be deeply affected. “Sickness leaves can indeed be frequent and affect their education and career,” notes LFI. More than one in two women with endometriosis (53%) note a decrease in her work capacity, according to the EndoVie survey, conducted in 2020 by Ipsos and EndoFrance. According to the “Endotravail” survey, carried out by researcher Alice Romerio, a third of the women questioned leaves their work hastily once a month because of the symptoms of endometriosis. Almost one in two (49%) believe that the disease has hindered them in their professional career.

This is what Flora testifies in this article by Slate. After a diagnosis of endometriosis and multiple sick leaves and medical appointments, she was placarded. “Little by little, my boss sidelined me from the job I was trained for, limiting me to unnecessary tasks, such as sticking stickers. He put a temp in my place, and moved me straight to a corner of the factory. He explained to me that I was not profitable for him, ”she recalls. Even her female colleagues do not understand, whereas Flora has to come to work by walking with a cane. They “didn’t understand why I was quitting because of my period. They were ruthless, very mean. They called me a flank, an imaginary patient. I cried every night when I got home, I was so tense ”. The young woman ends up converting.

For all these reasons, far from being exhaustive, and because endometriosis is crippling on a daily basis, it is requested that this disease be added to the list of ALD. While waiting to know if the LFI bill will be accepted by the Assembly, the Elysee has kicked in on this issue. “The HAS (Haute Autorité de Santé) came to the conclusion that the criteria were not met” to transform the “piecemeal” recognition of the disease into ALD according to criteria of gravity or severity into automatic recognition . Emmanuel Macron, for his part, said he wanted to focus on medical research and improving the management of endometriosis, among others. However, no concrete budget has been announced by the President of the Republic.

See also on Then24: Macron’s plan to (finally) fight endometriosis

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