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"Quando tutto ciò che conosci è il dolore, non puoi sapere che non è normale". Con queste parole l'attrice premio Oscar Susan Sarandon dice più di qualunque trattato medico sull'endometriosi. E sì! Perché le frequenti mancanti diagnosi avvengono proprio perché si associa ai forti dolori mestruali l'aggettivo normale. E invece sin dalla più giovane età è molto importante sapere che i dolori mestruali e durante i rapporti non sono normali e che non devono essere taciuti. In un discorso alla Endometriosis Foundation of America sempre l'attrice spiegò: "La sofferenza non è il destino di una donna, anche se siamo state cresciute con quest'idea. Non va bene perdere una parte della propria vita a causa del dolore e del sanguinamento eccessivo". A lei è stata diagnosticata a 36 anni e nonostante le avessero detto che non avrebbe potuto avere figli, è diventata madre tre volte. I suoi racconti danno conforto a molte donne.
Cosa è l’endometriosi
E' una malattia causata dalla presenza di endometrio, cioè la mucosa che dovrebbe rivestire esclusivamente la cavità uterina, all’esterno dell’utero. Si ipotizza un passaggio durante le contrazioni uterine della mestruazione, di frammenti di endometrio dall'utero nelle tube e da queste fino all'addome, sulla superficie degli organi pelvici, ma può capitare anche nel fegato, nel diaframma, fintanto al polmone. L’endometrio nella endometriosi è simile all’endometrio normale ma ha un’alta capacità di aderire a strutture extrauterine.
In Italia sono 3 milioni le donne con diagnosi conclamata
In Italia soffrono di endometriosi il 10-15% delle donne in età riproduttiva. Si tratta di circa il 30-50% delle donne infertili o che hanno difficolta a concepire. Con diagnosi conclamata si contano almeno 3 milioni di donne. Ma la diagnosi arriva spesso dopo un percorso lungo e dispendioso e psicologicamente molto pesante.
Si tratta di malattia invalidante
La prima conseguenza è un fortissimo dolore mestruale ma anche astenia e lieve ipertermia, che può accentuarsi in periodo mestruale, e fenomeni depressivi importanti. Ancora dolore durante i rapporti sessuali, o durante la defecazione, a volte accompagnato dalla comparsa di sangue nelle urine o nelle feci, quando l'endometrio si annida nella zona rettale Altre volte i dolori si manifestano durante la minzione e sono caratteristici della endometriosi vescicale. L’endometriosi è causa di infertilità (30-40% dei casi) e l’impatto della malattia è alto ed è connesso alla riduzione della qualità della vita e ai costi diretti e indiretti. Una limitata consapevolezza della patologia è causa del grave ritardo diagnostico, valutato intorno ai sette anni. Una pronta diagnosi e un trattamento tempestivo possono migliorare la qualità di vita e prevenire l’infertilità.
Possibili cure
Tra i trattamenti proposti per l’endometriosi l’uso della pillola. L'estroprogestinico o il progestinico sono capaci di migliorare il quadro sintomatologico in quanto interrompono la stimolazione ormonale. È importante che la pillola estroprogestinica nelle donne con endometriosi sintomatica venga assunta continuativamente, senza l’interruzione ciclica di pochi giorni. Nei casi più gravi c'è anche il trattamento più invalidante con gli analoghi del GnRH, farmaci che bloccano totalmente la stimolazione delle ovaie e quindi la produzione ormonale creando una sorta di menopausa iatrogena (con gli inevitabili effetti collaterali quali vampate di calore, secchezza vaginale, aumentato rischio di osteoporosi).
Molte star ne sono affette
Una star di Hollywood famosissima è Whoopi Goldberg a cui l'endometriosi è stata diagnosticata 40 anni fa: "Non c'è niente di sporco", aveva dichiarato l'attrice sull'importanza di diffondere la consapevolezza della malattia al Blossom Ball del 2009, "Nessun gruppo religioso se la prenderà se se ne parla, perché se invece non se ne parla molte altre donne si troveranno a non poter avere figli, oppure rischieranno la morte perché la malattia ha portato a qualcos'altro". Un altro esempio più giovane questa volta, ce lo offre nel 2016, Daisy Ridley – la Ray di Star Wars – che aveva rivelato su Instagram: "Ascoltate il vostro corpo senza temere di sembrare delle ipocondriache", aveva scritto. "Possediamo un solo corpo, assicuriamoci che funzioni al meglio, e chiediamo aiuto se necessario". La modella Jamie King ha raccontato che ha impiegato quasi 15 anni per ricevere una diagnosi: "Sono andata da 10 medici diversi e ognuno mi diceva una cosa diversa. Nessuno sapeva spiegarmi perché avessi questo ciclo così abbondante, dolori così forti o avessi dolore durante i rapporti sessuali. Finalmente, a 28 anni, un dottore mi ha detto che si trattava di endometriosi". Ancora Gabrielle Union ha riferito come le avesse causato infertilità. Ma anche nausea, fortissimi dolori e sanguinamento eccessivo durante il periodo mestruale. Aborti spontanei. "È stato un viaggio lungo e difficile perché per anni non riuscivo a capire cosa avessi. Poi un giorno è finalmente arrivata la diagnosi". In casa nostra Da Giorgia Soleri a da Rossella Brescia fino Nancy Brilli.
La serie italiana su Prime
L'hanno già definita la Fleabag italiana. S’intitola Antonia la fiction in sei episodi che in modo ironico ma serio tratta il tema del dolore femminile. "Non è facile combattere tutti i giorni contro un male che non sai di avere". A 36 anni, Chiara Martegiani, attrice e ora anche autrice di questo prodotto di qualità- che dal 4 marzo scorso è fruibile su Prime Video- ha trasformato il suo vissuto in un’opportunità artistica. E' la storia della vita turbolenta di un’attrice trentenne che soffre di endometriosi.