Hello, j’espère que vous allez bien ? Quel mélange d’émotions que de reprendre ma souris et mon clavier afin de venir vous écrire sur un blog. J’ai longtemps hésité puis finalement je me suis dis « Et zut, si ça me fait plaisir c’est le principal ».
Pour commencer et inaugurer ce retour, j’avais envie de répondre à quelques questions qui m’ont été pas mal posées sur Instagram au sujet de mon endométriose et de ma grossesse. Tout d’abord, avant de vous en parler plus en détails, je dois vous rappeler que ce n’est qu’un récit de mon expérience, et que pour toutes questions médicales sur le sujet, des spécialistes sont la pour vous accompagner et pour répondre à toutes vos questions! Sollicitez-les !!!
Mon endométriose, mon parcours :
Pour commencer, petit récapitulatif de mon parcours. J’ai toujours eu des règles douloureuses, et de mon époques (je me sens vieille en écrivant ça !!), il était qualifié de « normales » les douleurs de règles. Rien d’inquiétant.
J’ai donc appris à vivre avec. Régulièrement j’avais de très très intenses douleurs au niveau du bas du ventre à droite. J’ai d’ailleurs eu à plusieurs reprises des échographies et prise de sang pour suspicions d’appendicite. Forcément, les résultats revenaient toujours négatifs. Un jour, alors que je travaillais dans un service de chirurgie viscérale, un des chirurgiens, surpris de mes douleurs à voulu explorer un peu plus ma problématique. Pour lui c’était digestif, il m’a donc envoyé passer un coloscopie.
Je vous avoue que je me souviendrai toujours de ma gastro-entérologue de l’époque, l’examen se passe bien, mais au moment de me donner les résultats, le mot est posé : endométriose. Vous me direz, examens de l’intestin et endométriose, quel est le lien. Je n’ai jamais vraiment su ce qui l’avait amené à poser ce diagnostic, peut-être ce qu’elle a vu pendant l’examen, toujours est-il qu’elle m’a envoyé consulter un spécialiste et qu’après échographie et IRM, le diagnostic initial était confirmé, je suis atteinte d’endométriose profonde.
Sur le coup, c’est un vrai coup de massue, je vais regarder sur internet (ce qu’il ne faut pas faire), et je lis pleins de témoignages sur l’infertilité, les douleurs. C’est la panique. Le spécialiste qui me suit à l’époque n’est pas non plus très rassurant, et me confirme toutes ces inquiétudes. Je me fais opérer, pour enlever toutes les lésions et tenter de me soulager. Suite à l’opération, je prends une pilule en continu (je n’avais donc plus mes règles) ce qui stabilise à peu près la situation pendant 2/3 ans. En 2019/2020, toujours sous pilule en continu (ne me demandez pas le nom, ça ne vous apportera rien de le savoir et on a tous des tolérances différentes aux traitements. Si vous pensez avoir un souci avec votre pilule, parlez en à votre médecin), mais si physiquement ça va bien, psychologiquement pas du tout. Les hormones ne me vont pas, je suis mal, je pleure beaucoup, je vois tout en noir. Je décide donc, de consulter un spécialiste de l’endométriose sur Brest. Et mon dieu, sur quelle perle de médecin je suis tombée. Un médecin bienveillant, à l’écoute, pas dans le jugement et surtout rassurant.
Pour commencer il me change mon traitement, m’expliquant qu’en effet, la pilule que je prenais à l’époque n’est pas l’idéale pour ma pathologie car elle ne stoppe pas complètement l’ovulation et maintien donc une activité et qu’en plus les effets « psychologiques » que je ressens sont réels et que la situation ne peut pas durer en l’état.
Il me modifie donc mon traitement et à ce moment la, me sentant à l’aise avec lui, j’en profite pour lui poser les questions sur l’infertilité. Sa réaction a été immédiate, il m’a dit STOP!! Il m’a expliqué que oui l’endométriose pouvait avoir pour conséquences l’infertilité, que des femmes en souffraient mais pas toutes. Il m’a demandé de ne pas voir tout en noir tout de suite et d’attendre et que si cette situation se présentait à moi, il serait là pour m’accompagner, mais que pour le moment, plus je serai négative, moins ça fonctionnera.
Me voilà donc repartie avec un nouveau traitement et un peu moins d’inquiétudes.
Mon arrêt de la pilule, ma grossesse :
Alors une fois de plus, je vous parle de mon expérience, je sais que j’ai eu beaucoup de chances. Après 1 an, 1 an et demi avec ma nouvelle pilule, j’étais à nouveau sous le coup des symptômes « psychologiques » cela devenait pesant et compliquer à gérer au quotidien.
J’ai donc décidé d’en parler avec mon chéri en lui expliquant que j’avais envie d’arrêter ma pilule. Il était ok avec ça (car oui pour moi c’est une décision qui se prend à deux!!! Je vous vois venir c’est notre corps on fait ce que l’on veut avec. Certes, mais si un accident arrive, que bébé est là, c’est quand même mieux que Mr soit au courant non ? Puis honnêtement il n’a aucune raison de refuser, si il vous aime il voudra uniquement votre bonheur!). Donc il était ok avec ça mais m’a vivement conseillé de prendre rdv avec mon spécialiste, pour lui en parler, faire le point et peser le pour et le contre en termes de symptômes et de douleurs.
C’est donc chose faite, en novembre 2021, je prends rdv chez mon spécialiste, toujours aussi bienveillant et à l’écoute qui me dit que je peux essayé, qui me réexplique que la maladie va reprendre avec mes cycles, qu’elle peut à nouveau s’étendre et toutes les conséquences. Il me dit aussi que si je suis à un moment de ma vie ou j’ai besoin d’essayer, il faut que je le fasse et que je peux l’appeler si jamais j’ai besoin. Je me sens donc rassurée, et décide donc de l’arrêter.
Il m’aura fallu 1 mois pour franchir le pas et l’arrêter. Même si je savais que j’en avais envie, j’avais peur, peur de la douleur, peur des crises, peur de retraverser tout ce que j’avais déjà traversé. La seule différence c’est qu’aujourd’hui je n’était plus seule. J’étais médicalement bien accompagnée, et surtout j’avais mon chéri à mes côtés et, ça croyez moi, ça change beaucoup de chose!!
Projet bébé ?
Vous me direz, et le projet bébé dans tout ça ? Honnêtement quand j’ai décidé d’arrêter ma pilule mon chéri m’a dit ok, pas de souci, on a d’abord pensé à utiliser d’autres moyens de protection, puis finalement, on en a beaucoup discuté, pendant de longues heures. Nous étions d’accord, nous étions prêts, si bébé devait arriver, il arriverait.
Par contre, 0 pression pour le moment, on ne calculait rien du tout, on voulait d’abord se laisser quelques mois, le temps à mon corps de se remettre de ces années de pilules. Nous pensions honnêtement que ça allait être long.
Donc j’ai arrêté ma pilule le 13/12/2021, pour être exact! Et sans aucun calcul, à la grande surprise générale, je suis tombée enceinte le 09/02/2022 ! Soit tout juste deux mois après l’arrêt de ma pilule. Donc comme quoi, chaque corps est différent, et le message que j’aimerai faire passer c’est simplement, ne prenez pas pour acquis le parcours d’une autre femme. Certains vont mettre plusieurs mois à avoir à nouveau leurs règles et à récupérer des cycles réguliers, pour d’autres c’est immédiat. Je suis tombée enceinte facilement, est-ce que ce sera pareil pour le deuxième si nous décidons d’en avoir un deuxième ? Je n’en sais rien. Il n’y a pas de règles.
Mais juste écoutez vous, votre corps et vos médecins. Pas le parcours des autres. N’enviez pas une femme qui a réussi à tomber enceinte du premier coup, sans fausse couche, car sa future grossesse ou tentative sera peut-être un calvaire. A l’inverse, devant un récit de parcours proche de l’enfer, ne vous répétez pas en boucle que ce sera pareil pour vous, cela ne veut rien dire, cette pathologie est encore peu connue et maitrisée, il n’y a pas de règles. Retenez une seule chose, Endométriose et grossesse ce n’est pas forcément incompatible!
Donc voilà, vous savez tout, j’espère avoir répondu à vos questions en vous partageant mon expérience. Je vous partagerai dans un article futur un récap de mon premier trimestre de grossesse, qui n’a pas été tout rose du tout!!!
Pour toute question sur l’endométriose, je vous invite également à visiter le site EndoFrance, site de l’association française de lutte contre l’endométriose.
En attendant, merci de m’avoir lu si vous êtes arrivés jusque là !!
Belle journée,
Iris
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