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Endometriosis photo challenge 2020 🎗 Week 1: Yellow 🌻✨💛 @endoireland • • • • #yellow #sunflower #yellowforendo #endometriosis #1in10 #endometriosisawarenessmonth #endomarch #endowarrior #endophotochallenge #endostrong #EAI #endobabes #fightlikeagirl #endosisters #endostrong #findacure -Day 7 💜 https://www.instagram.com/p/B9dha3_HPdR/?igshid=1bjhrc98v265w
04.03.2020
March is Endo Awareness month! I’d like to do several posts detailing some information about endo in general, myself and my experiences with endo and shed some light. Starting with this one about ‘My Diagnosis’...
I was officially diagnosed about a year and a half ago. I was initially diagnosed with polycystic ovaries without proper consultation and when the treatments for this didn’t work I ended up collapsing and being hospitalised. Due to this, they agreed to do a diagnostic laproscopy- which is the ONLY way to properly diagnose endometriosis. After this, they confirmed I had it and the surgeon told me it was ‘extreme’.
I feel quite fortunate to have been diagnosed fairly quickly as on average it takes seven years for a woman to be properly diagnosed with endo. This is far too long. After my initial laproscopy, I had excision surgery where the surgeon informed me it was stage 4 and was absolutely everywhere. My bowel was fused to my uterus, I had a 5cm ‘chocolate cyst’ or endometrioma, my pouch of douglas, ovaries and uterus were covered but they did manage to excise a lot of it.
Seven years is too long for anyone to be suffering, it should not be the uphill battle that it is for a woman to be diagnosed and treated. It’s debilitating, life changing and exhausting in every possible way.
xo A.L.
Endomarch 2019 !
Samedi avait lieu l’endomarch, la marche de sensibilisation à l’endométriose. Le temps était magnifique et moi qui assistait à cette manifestation pour la troisième fois (souvenirs de 2017 et 2018), je n’avais jamais vu autant de monde! Il y avait notamment beaucoup de proches, ça fait chaud au cœur.
Pour mon plus grand plaisir, nous avons marché au son des batucadas. L’ambiance était à la fête et c’était comme une bouffée d’oxygène dans l’univers d’Endoland, qui n’est pas toujours joyeux.
I am #1in10 💛 March is Endometriosis Awareness Month. I have Stage IV Endometriosis and you might be surprised at how many other women you know who struggle daily with this disease. #1in10 #endometriosisawareness #endosisters #endowarrior #stage4endo #endomarch #spoonies #sickgirlsclub #spooniestrong #chronicpain #chronicillness
I'm so damn tired.
I’m tired. So so very tired. I’m tired of the bleeding. I’m tired of the cramps. I’m tired of being sick. I’m tired of being a 50 year old in a 21 year olds body. I’m tired of not being able to go out. I’m tired of trying to explain to my friends why I don’t won’t to go out. I’m tired of not being able to make it to class. I’m tired of calling in sick to work. I’m tired of crying myself to sleep at night. I’m tired of pain pills. I’m tired of monthly shots that make me a menopausal bitch. I’m tired of a purse full of medication. I’m tired of hearing I’m sorry. I’m tired of feeling sorry for myself. I’m damn sure tired of the pain. I’m tired of, “let’s look at some other options”. I’m tired of being a woman with this disease. I’m tired of there not being a cure. I’m tired of endometriosis. I’m so damn tired and I just wish I could sleep.
Petit retour sur l’endomarch 2018! Pour cette dernière édition, les Hauts-Parleurs tournaient la suite de la première vidéo (où je vous racontais comment je finissais sur le carrelage à chaque menstruation, joie, bonheur...).
Cette fois-ci ce fut pour moi l’occasion de présenter mon dernier projet Endométri-ose le dire. Une collaboration avec la strat-up citoyenne Make.org et mon blog, soutenu par l’association de médecin Pour une MEUF et de malades Mon endométriose ma souffrance (MEMS). Dans ce projet qui me tenait à coeur, j’ai mis à votre service mes compétences de juriste pour répondre à vos questions, sur vos droits face aux médecins mais aussi vos droits sociaux. Le projet a eu un tel succès, qu’il y a peu, il a été repris par Endomind ici.
Petits exemples de ce que vous retrouverez sur les différents sites:
Faut que je vous fasse une confidence. J’ai pris ce mois de mars pour militer mais c’est trop pour la maladie. Depuis les portes ouvertes de Saint-Joseph il y a deux semaines, le stress fait flamber la maladie avec les douleurs neuropathiques ingérables. Hier j’ai craqué et pris un anxiolytique pour gérer l’incendie. Et là je continue avec en plus les anti-douleur, inflammatoire... Le cocktail quoi !
Mais je prépare un projet rien que pour vous et je serai là, rendez-vous demain à 14H au stand Mon endométriose ma souffrance. Je sais qu’en vous voyant j’oublierai la douleur!