Endometriosis: "The pain became excruciating, I had to have the uterus removed"
By Léa Giandomenico published leactu see my news
Acute pain in the lower abdomen, sciatic pain, headache, urinary and digestive problems ... Daily, endometriosis can become a very disabling disease for certain women.However, no remedy still exists.
So how to live with this disease?Women have confided in Actu.Fr.
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« On me disait que j’étais une chochotte»»
For many women, the story begins in the same way: with the first rules ... and the stomach pain that accompanies them.
Gül, 39, has been suffering from severe endometriosis since his 9 years.While she has chronic and multiple pains, her diagnosis is only made at the age of 25, after years of medical wandering.
"The pains started with my first period. J’étais pliée en deux chaque mois, j’avais des pertes de sang énormes, je ratais l’école… je me rendais très Fréquemment à l’hôpital et on me disait que j’étais une chochotte, que toutes les femmes avaient leurs règles»», se remémore cette habitante de la région parisienne.
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« Je perdais très souvent connaissance»»
Same bell for Cindy, 31, suffering from endometriosis since the age of 11."With my first rules, I immediately had intense pain and very abundant rules," she tells us.
For her as for Gül, doctors have never made the link between these very painful rules and endometriosis."I was told that it was normal, that if I vanished, it was because I was doing tensions of tensions, that I had a little health," recalls Cindy.
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Multiple pains
But for many women, pain does not stop at stomach aches and painful rules.Gül, for example, has big intestinal problems, back pain and the left shoulder, and regular headaches.
"One day, I did an internal hemorrhage, at 25 years old.That's when I was told that it could be endometriosis.I had to do an internal hemorrhage for being diagnosed!», She quips.
Cindy, on the other hand, to sciatic pain, which paralyze the lower body, from the right buttock to the toe.Finally, she has regular urinary pain."If I want to go to the toilet and hold back for some time, I have very high pain," she explains.
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Medical wandering
From her 19 to her 25th birthday, Cindy sails between four different gynecologists, who all serve her the same speech: all women have badly during their period, she must hold their teeth and stop complaining.It was not until 27 that she is diagnosed, thanks to an MRI.
However, the more late in diagnosis, the more the disease and the pains settle, the more complicated it is to treat patients.And Gül's problem is that the disease is already well installed.We then offer him an operation, which goes very badly.
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"The surgeon who operated on me knew nothing about the disease, like many other doctors at the time elsewhere.The endometrium had spread to the level of some of my organs, it should not have touched anything.But it has scratched everywhere, ”continues Gül.
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Better train professionals
After that, the operations are still linked."I can't even count them anymore ... Now, as my bladder no longer works, I have to sound.Sometimes I can't walk anymore because my sciatic nerve is reached.I always have very regular pains.So yes, improve the training of doctors, radiologists, nurses is capital ", she argues.
About fifteen laparoscopies
Elizabeth, 66, has gynecological problems from adolescence: very painful rules and very abundant blood loss.Quickly, it is sent to Paris for an intervention, and we detect its endometriosis around 18 years old.
"After that, I have been made of laparoscopies - surgical interventions that allow access inside the abdomen - to" scratch "this mucous membrane which attacked my organs.But nothing did, the pain was still coming back, "explains this resident of Le Havre.
In all, she will suffer about fifteen celoscopies until her 40th birthday in Paris."These were very painful operations, it was hard ...", she recalls.
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Nine different pills
If we do not offer an operation in Cindy, it is however put in pill which causes amenorrhea, and therefore a stop of the cause of the pain."In four years, I have tested nine different pills with various dosages.And I still haven't found the miracle solution, my pains end up coming back ", blows the one who is also volunteer in the Endofrance association.
This resident of Champagne-Ardenne then tries alternative medicine: osteopathy, specific diet.But nothing is really miraculous. Sans compter que « ça engendre des Frais»», poursuit-elle, « entre les séances d’osthéo non prises en charge, et les plaquettes de pilule non remboursées, à 60 euros le mois, ça devient parfois compliqué…»»
And these repeated pill changes make Cindy 20 kilos take."That was really hard, it had a big impact on my self -confidence.You must already accept the disease, and in addition its image in the mirror, ”she laments.
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« On m’a dit que je ne pourrais jamais avoir d’enfant»»
Elizabeth is also placed under pill, but quickly she wants to have a child."I was told that it would not be possible, that I could never have children.Yet I had a son, a miracle!», Says this sixty -year -old.
After that, we offer him hysterectomy.In other words, remove the uterus."Doctors told me it was the only option.But I wanted a second child, so I pushed this solution.»»
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Une « charge énorme»» dans la vie professionnelle
If the disease impacts the lives of these women on a daily basis, in their relationship to their bodies and pain, it also plays on their professional life.Since his operation, Gül has been recognized as a disabled worker.She had to leave her job as a specialized educator and now works in the administrative.
"I admit, I am not the most filled in the world, professionally.Before, my work was my life.Now I am part -time, I must constantly justify myself with my colleagues when I have pain, it is a huge charge ", breathes the thirty -something.
The disease also played a lot on the quality of work of Cindy, who had trouble standing because of her sciatic pain.And for her, some jobs are excluded: she must be able to go to the toilet when she wants.
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For Elizabeth, reconcile endometriosis and her night nurse work, "it was hard to manage.With these very abundant rules, I must constantly change. Et puis mon travail était physique, et moi j’étais fatiguée, parfois faible»», raconte-t-elle.
« Socialement, ça reste compliqué»»
On a daily basis, the disease takes life to these women hard."Socially it's complicated.When I plan to go out with friends, I annul too often at the last moment because I have a crisis. Et je me sens incomprise»», explique Gül, qui est désormais référente pour EndoFrance en Île-de-France.
From now on, most people have already heard of endometriosis, the subject is less taboo."I am lucky to have a very understanding circle of friends, and to have a very benevolent spouse compared to that. Je suis bien entourée»», argue Cindy.
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However, these women draw the same teaching: we must continue to better train health professionals on this subject. Et Cindy de conclure : « Si l’infirmière de mon collège avait su ce qu’était l’endométriose quand j’allais la voir Fréquemment pour des douleurs de règles, ça m’aurait peut-être évité des années d’errance»».
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