#endofighter

Mon endo-reportage : Endométriose, une maladie qui sort de l’ombre, de Claire Chognot

J’ai ENFIN trouvé le temps de voir ce reportage! On y retrouve tous les classiques du sujet de l’endométriose : le déni de la société et du monde médical, les difficultés à garder un travail, les conséquences sur la vie de couple, les théories sur l’origine de la maladie, la liste des soins possibles. 

Le point noir c’est d’avoir évoqué l’opération au plasma sans avoir parlé des critiques qu’il existe à l’égard de celle-ci. Le point positif concerne l’évocation des recherches aux Etats-Unis sur un traitement qui ciblerait les lésions. 

As many of you are aware I was finally diagnosed with endometriosis on Thursday. I said after about a year or two but in reality I’ve been battling this since 2014. In a nutshell, Endometriosis is where tissue grows on the womb, and other places including the ovaries, fallopian tubes, inside the tummy, and in or around the bladder or bowel. My aim of this post is to raise awareness and educate people on endometriosis as I think it is such a bleak subject. This thing on a whole is still very raw for me and I’m only touching the base of my story as I am very emotional about it all.

In 2014 I started noticing significant difference in my periods. They were becoming less and less but more painful. My normal menstrual cycle would be around the same time every month on the dot, for about 4 days and I very rarely suffered from pain at all. From 2013- 2015 I had the most stressful period of my life, this is where lost my dad and my mental health state went to pot. I eventually managed to get myself to go to the doctors in 2016 where by this point I had a mega long list of symptoms that didn’t make sense.

As I stated before my first noticeable change was my periods:

My periods had become less and less but more painful. They would only last a day or two, I’d have one very heavy day usually the first but then after the second day it would just be spotting but the pain would linger for the length of normal period ranging from 4-7 days. I began noticing very strange things happening such as bleeding upon wiping after going for a wee when I wasn’t on my period, or after a no.2, I had streaks of blood in both. My bowels have always been temperamental, which is why it was harder to diagnose. Often I’d wake up in the middle of the night in a pool of blood (no exaggeration) and eventually ended up sleeping with a towel in bed my so I didn’t ruin any more sheets. I honestly must’ve ruined about 10 bed sheets. You’re probably wondering why I didn’t use a tampon or sanitary towel: the answer to that is because I didn’t know when I would bleed or not.

Throughout the day I would pass blood clots, again without being on my period, my underwear would constantly be blood stained, as if I was spotting.

I’d have a constant dull ache sometimes sharp in the lower region of my stomach, with occasional lower back pain which worsened in the week before my period, the week of my “period” and the week after, so essentially I would have one week free of pain. I ended up living of co-codamol, which probably isn’t advised but my GP refuses to give me anything stronger, especially as I have a sluggish bowel.

I am constantly bloated, which makes me incredibly self-conscious, body image and body positivity had disappeared I don’t feel attractive. Which I won’t lie I am finding incredibly difficult at the moment. I just don’t want to make effort with my appearance, I can’t stand the way my stomach look, my face is constantly puffy and I look exhausted 24/7. If I could wear a balaclava ALL the time I actually would. I know looks aren’t everything but it’s making me miserable.

LET’S TALK ABOUT SEX BABY. Haha no jokes here though. I experience pain during sex a lot of the time to the point where sex doesn’t even appeal to me anymore because I’m petrified of the pain during and after sex, I also bleed a lot after sex, it’s rather messy. (sorry to be grim) It puts a massive strain on the intimacy levels, because ive found that my partners always think they’re hurting me. Which isn’t the case.

My GP in 2016 diagnosed me with stress, and put me on the pill to help regulate my periods. Which I wasn’t 100% for because I knew something else was going on. I stayed on the pill for around two months and decided I still wasn’t happy. Nothing had changed either.

Two months later I returned and said I still wasn’t happy. She sent me for an external and internal ultrasound. My ovaries and other parts of my reproductive system all came back normal, a relief in one sense but still a pain because I still knew something wasn’t right.

I was made to feel like I was over exaggerating.

I knew something was majorly wrong with my body, as I used to have normal periods, I never had all of these problems when I was younger, so why now?

After being fobbed off so many times I decided to leave it, as they were obviously right.

In 2017 a lot of things started to get worse, I was having time off work because of the pain, I was bleeding irregularly more often, and I was miserable, I was stressed out and I thought there was something malicious going on.

I went back to my GP, ended up seeing a male doctor this time, and demanded that he sent me to a Gynaecologist. I showed him my symptoms and for once someone didn’t argue with me.

A month later I had my first appointment with my consultant, who listened to my concerns and explained to me that she thought I had endometriosis. DIDN’T HAVE A CLUE WHAT THAT WAS. After our chat my consultant tried to examine me, she didn’t get very far, I was in so much pain, and was bleeding on examination she decided to leave me be.

I was booked in for my Laparoscopy on 21st September 2017.

On the day of my laparoscopy I was mega nervous, I hadn’t slept a wink and I just wanted it over and done with. I got there about 11am and was sent down to theatre at 1pm. I didn’t return to the ward until 14:45 as I spent a lot of time in recovery (Didn’t come round well apparently)

When I was finally awake properly I was in agony, my body was so weak I couldn’t speak, all I could do was cry, I was in the worst pain imaginable they gave me some morphine when I was in recovery, and I had some codeine when I was on the ward. When it all had kicked in, I was high as a kite, my consultant came round to see me and explained that things had gone well but like we had expected I do have endometriosis, it was found on my womb and was burnt away as much as she could possibly could. I was initially shocked, tearful, but at peace because I finally had answers. When I was under general anaesthetic I had a hormonal coil inserted which will hopefully help with the pain, fingers crossed it does or that’s a waste of time.

My main concern with all of this is that I wouldn’t be able to have children, I still don’t know whether I can but I do know that if I get any growths on my ovaries then it will make it a lot harder for me to conceive, then I have the battle with my lungs, I’m hoping that they stay on my side and keep me healthy enough so that if I am ever lucky enough to conceive I am also healthy enough to carry a child. Right now it feels like my body hates me, I know that my health can be a lot of worse and I’m not complaining but I just feel like a ticking bomb. Ticking away and I don’t know which ones gonna blow first, my Endometriosis or my Cystic Fibrosis.

 My recovery seems to be going okay, I’m able to walk around a lot more, I can’t bend as much as Id like, the pain is unbearable of a night time, and I’m sleeping most of my days as I’m so tired. So if i don’t reply to you all for a while I’m not being rude I’m literally exhausted.

but on a more positive note Thank you all for your lovely get well soon messages and feel free to message if you have any personal questions, I will always try and help you as much as I can x

Happy New Year everyone!  My hope going into 2018 is that I make it out alive.  Gotta set those expectations pretty low so you're never disappointed.  Life tip #987 for you guys ;)

Let me catch you up on the last week or so as it's been a little bit since I've written anything.  Christmas came and went super fast per usual.  There's always so much build up and then you sneeze and it's over.  Christmas was a tad emotional this year.  It's a rough time of year for us crazies who are obsessing over having a child since reminders are absolutely everywhere.  I would like to take my screaming child to sit on creepy Santa's lap or have them be the center of my adorable Christmas card, naked, wrapped in lights on a fur rug (see my last post for a nice visual of Paul in this same scenario).  Instead, I just get to look at everyone else's pictures of their petrified child sitting on creepy mall Santa's lap.  It's not as fun; I'd rather traumatize my own child. Christmas Eve day was spent pretty much just ugly crying all over the place.  I couldn't let it slow me down since I had things that needed to get done, like wrapping ALL of the gifts and getting myself thrown together for Christmas Eve with my family.  So, I just ugly cried while doing all of things I needed to get done.  What a f*cking mess that was.  Ask Paul, it wasn't pretty.  Wrapping presents is difficult enough for me (I'm incredibly bad at wrapping) but doing it through swollen seeping eyes was a whole other level of difficult.  By the end, the presents were soggy and mangled, just how everyone likes 'em!  My day of emotional turmoil sparked some super intense hot flashes so that was fun too.  Can't say my day wasn't eventful.

I eventually pulled my shit together, as I can usually do, and got myself over to my sister's house to celebrate with my family.  You may be getting the idea at this point that I am super unstable and a really depressed person.  That's not all true.  Yes, I am incredibly unstable right now so keeping your distance is well advised, but I am not a completely miserable person.  I still have a lot of happy moments but those ones aren't as fun to tell you guys about because then it seems like I'm bragging.  I'd rather show you all my lowest and most pathetic moments because those are more fun to laugh at.  I may have some pretty sick humor, take it up with my family, they taught me this behavior.  Anyways, Christmas with my family was enjoyable as always.  They usually pull me out of my funk; it's probably the sick sense of humor we all share.  The rest of Christmas was relaxed and uneventful, nothing to write home about.  I was super thankful for a mellow Christmas this year; it's exactly what we needed after the hectic year we just barely made it through.

The following week was blah.  The week between Christmas and New Years always feels off, like no one knows what day it is, everything is dark and dreary, time doesn't exist and the only thing there is to do is eat all the left over crap from Christmas.  I mean, am I wrong?  I spent my week on a boat.  Don't get all jealous, I wasn't actually on a boat, my body just felt like it.  It's a fun adventure MS has added to my life.  It's awesome!  I always get to feel like I'm on a sweet ocean vacation but I'm actually just bashing between the stall walls in the bathroom at work.  Literally.  I sway back and forth and ping-pong between walls.  It's cool though, I just tell everyone I'm drunk.  This is probably frowned upon at work but screw it, I like to live on the edge.

New Years Eve came up fast.  As usual, Paul and I made plans to go out and drink with friends to ring in the new year the correct way, drunk.  And, as usual, my body wasn't cooperating.  Friday I had some cool burning whilst peeing.  You're welcome for the TMI.  I for sure thought a UTI was going to ring in the new year with me.  Saturday I woke up to burning while peeing, horrible pelvic and back cramps and my most favorite friend...my monthly destroyer.  Blood.  Blood?  Wait, what the f*ck?  I am on lupron for this exact reason, to keep this guy at bay.  My cool body just does whatever the hell it wants though.  It defies all the odds, but not in the cool matrix style way, more of in the "you have a .02% chance of experiencing this side effect" way...and then I experience the side effect.  Sunday, New Years Eve, I woke up to even more pain, blood and tears.  Oh God, so many tears.  This is really becoming the norm for me.  The day was spent curled up with heating pads on my front and back with intermittent sobbing.  Mostly, I was disappointed my plans for the night would now be laying on the couch trying not to die.  Another thing my body ruined for us.

I'm starting to lose sight of why I'm doing the lupron at all.  It was supposed to be a way to give my body a six month break from the bleeding and pain, but it just rears it's ugly head anyways.  Oh well, one more month to go.  My doctor gave me estrogen patches to help with the 'she-devil' side-effect of the lupron.  Estrogen is one of endometriosis' main catalysts but I figured my doctors knew what they were doing putting me on it.  Guess not.  It's the reason for the most recent pain and bleeding.  Now I'm in this weird vortex of taking lupron to help with pain and bleeding and taking estrogen to help with the lupron only to end up with pain and bleeding.  Um, what?  This sure makes a lot of sense.

So anyways, Paul and I rang in the New Year sound asleep.  Leading up to that, we binge-watched Black Mirror on Netflix and ate complete garbage since we're back to our healthier way of life today.  By the way, if you haven't watched Black Mirror, go watch it, it's crazy.  Also by the way, if you haven't tried Mochi, go buy some.  It's my new obsession.  The best thing about not going out last night, no hangover today!  What a great way to start the new year, haven't done this in years!

Last year, I made the resolution that I was going to get pregnant.  2017 was our year!  Smart.  Really set myself up for failure with that one.  Do me a favor and do not make a resolution that is not within your control.  I may have not ended up with a baby, but you know what awesome thing 2017 did give to me?  MS.  I hope you can feel my sarcasm oozing out of your screen right now.  No but really, set goals for the year that are obtainable and within your control.  That is exactly what I have done this year.  My three goals that I can achieve every single day are to eat healthy, move my body and ease my mind.  Easy enough, right?  Side note, if I say "exercise" I will not do it; I hate exercising.  If I say "move my body," I'll definitely do it because it's fun.  I specifically like to move my body to music.  No one else really likes when I do this though.  I may have the most awkward white girl moves you've ever seen, but I'm doing the damn thing, so deal with it, or avert your eyes.  Also, my goal of easing my mind can be achieved in many different ways and will always be something I enjoy so I can't possibly fail at that.  I can meet that goal daily by reading something I enjoy, writing to you fine folks, writing more privately, yoga, listening to music or trying something new.  Meditation is something new I'm dabbling in.  I have a crazy loud and obnoxious mind and getting it to quiet is definitely going to take some practice so wish me luck!

Mon endo-lecture : Histoire de l’endométriose de l’Antiquité à nos jours, du Dr Petit

Le Dr Petit est connu comme étant LE radiologue spécialiste de l’endométriose. Il est par ailleurs à la tête de Résendo qui rassemble des spécialistes pluridisciplinaires de l’endométriose. Dans cet article, il retrace l’endométriose et le moins que l’on puisse dire c’est que cela vaut son pesant de cacahuètes.  

Ainsi cette maladie est décrite depuis l’Antiquité, notamment dans le Corpus hippocratique et par Platon lui-même. Tout y était déjà décrit: violentes contractions utérines, inflammation, état syncopal ou convulsif. Ces crises sont qualifiées d’hystérie, du terme grec désignant l’utérus. L’effet bénéfique des grossesses est aussi remarqué. On la soigne grâce à des traitements anti-estrogéniques, qui “sont parfois de nos jours encore proposés en pratique de médecine parallèle ou alternative.” 

Au IIème siècle, le médecin Galien a une soudaine idée, qu’il décide de transformer en théorie. Il a ainsi affirmé “avec autorité le lien potentiel entre troubles psychiques et d’origine utérine, source d’errance et de confusion pour les siècles à suivre dans la prise en compte réelle des douleurs liées à l’endométriose, encore perceptibles aujourd’hui et ainsi responsable d’un retard diagnostique en moyenne de 7 à 9 ans, très délétère.” 

Au Moyen-Age on confond de plus en plus endométriose et hystérie, que l’on attribue à l’époque à une possession démoniaque. S’en suivent exorcismes, exils, voire exécutions pures et simples. 

A la Renaissance les autopsies confirment les thèses hippocratiques. Ainsi en un millénaire on n’a toujours pas avancé. Cependant je vais être indulgente, c’était une époque où il n’y avait aucun moyen technique, où la transmission du savoir était difficile et où entre les guerres et les épidémies, il y avait peu de temps pour la recherche. 

Au XVIIème les médecins considèrent de plus en plus les troubles gynécologiques trouvent leur origine dans la psyché. “Cette funeste orientation doit être prise en compte dans la sous-estimation encore aujourd’hui de la dysménorhée, considérée trop souvent comme normale et obérant ainsi la possibilité diagnostique de l’endométriose”. 

En 1690, Daniel Schrön décrit précisément les signes cliniques et macroscopiques de l’endométriose, telle que connue de nos jours. Il évoque aussi le caractère héréditaire. 

Au XVIIIème siècle la littérature médicale compile les symptômes de l’endométriose mais les attribue à l’hystérie. “Son origine psychoneurologique est affirmée avec une connotation morale péjorative et les femmes atteintes sont considérées comme dérangées mentalement, l’enfermement en maisons de fous les guettant.” De mieux en mieux, je me demande ce que me réserve la suite de l’article comme réjouissance... 

Arrive le XIXème siècle et un groupe de scientifiques qui pour une fois ont une pensée rationnelle! Ces français (cocorico) se penchent sur la nomenclature de ce que l’on appelle à l’époque les hématocèles cataméniales. Ils confirment le caractère déclenchant des règles et “cela sans aucune référence à l’hystérie, en considérant ainsi clairement son caractère purement organique.” ENFIN! Quel soulagement! Armand Trousseau commente les travaux dans le British Medical Journal et formule une recommandation encore utilisée de nos jours “à chaque fois qu’une femme, en période de règles, se plaint de douleurs pelviennes allant jusqu’au malaise, le diagnostic d’hématocèles cataméniales (endométriose) peut être fait.” En 1852 “quasiment tous les symptômes et les lésions macroscopiques identifiables dans l’endométriose étaient connus et attribués à une seule entité pathologique, y compris l’association à des troubles digestifs, alors qu’encore trop souvent méconnus de nos jours.” Pourtant Jean-Martin Charcot renonce à l’origine organique de l’hystérie et la définit comme un trouble psychologique. L’attitude de ce cher Jean-Martin n’a malheureusement pas été sans conséquence. Ainsi, Franz Winckel note en 1857, que les femmes ayant des lésions trop petites pour être perceptibles, sont considérées comme hystériques “et incomprises de leur entourage compte tenu de leur apparente bonne santé en contradiction avec leurs plaintes majeures. C’est l’une des premières observations de l’absence de corrélation anatomoclinique dans cette maladie.” Les patientes gagnent ainsi des chocs électriques! (Quand je pense que le “grand spécialiste” recommandé par Endo*** m’a fait le coup de “vos douleurs ne sont pas proportionnelles à la taille de vos lésions”, il a eu son diplôme au XIXème???) 

Et au XXème siècle qu’en est-il? Au début, “le spectre de la maladie mentale revenait facilement, surtout quand aucune lésion manifeste n’était retrouvée par le chirurgien, alors que parallèlement la symptomatologie révélatrice était de mieux en mieux décryptée, y compris dans ses voies atypiques.” En résumé, ils continuent de dire “c’est dans votre tête” alors qu’ils ont de moins en moins d’excuse. Dans les années 30 et 40, de plus en plus de cas étaient repérés à l’adolescence et dans les années 50, la pilule contraceptive fait son apparition. Malgré tout, dans les années 70, jusqu’à 70% des cas ne sont pas détectés.  

Résumons donc la situation. On a cessé de croire que la Terre est plate mais on continue à croire que notre utérus nous rend folle... Les symptômes cliniques sont connus depuis des millénaires, ou au moins des siècles pour les microscopiques, mais les médecins ne connaissent toujours pas cette maladie qui touche pourtant autant de personnes que le diabète ou l’asthme. Vous imaginez un médecin ne pas connaître ces deux maladies? Non, car chacune touche 4 000 000 de patients et à ce stade cela devient un problème de santé publique. Aujourd’hui on est capable de greffer des visages mais même si cette maladie a été remarquée depuis l’Antiquité, on n’a jamais mené de recherches poussées pour identifier le fonctionnement de l’endométriose qui touche 180 000 000 de femmes dans le monde. On propose encore aux malades des plantes progestérone-like ou régulant le taux d’oestrogènes, sans oublier la fameuse grossesse qui dans l’esprit de certains médecins est censée guérir l’endométriose (c’est complètement faux au mieux vous aurez une rémission). Ainsi en plusieurs millénaires la prise en charge a guère évoluée. Quelle excuse peuvent-ils invoquer en 2018?