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Real stories from people living with endometriosis — shared in their own words.

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Patient stories

  • Fei

    China

    “If I had known this six years ago, perhaps today would be different.”如果六年前我知道这些,也许今天会不一样

    For six years, I believed I was doing exactly what I was supposed to do. Around 2020, something unusual happened. Just before my period, my fingers suddenly became swollen for no clear reason. That one unexpected symptom led me to the hospital for an examination, and for the first time, I learned there was a cyst on my ovary.六年,我一直以为自己做对了。2020年前后,我有过一次不寻常经历-- 月经来临前,我的手指突然无缘无故地肿了起来。那次异常让我去医院做了检查,也第一次知道,自己的卵巢上长了一个囊肿。

    If I had known this six years ago, perhaps today would be different.如果六年前我知道这些,也许今天会不一样

    For six years, I believed I was doing exactly what I was supposed to do.六年,我一直以为自己做对了。

    Around 2020, something unusual happened. Just before my period, my fingers suddenly became swollen for no clear reason. That one unexpected symptom led me to the hospital for an examination, and for the first time, I learned there was a cyst on my ovary.2020年前后,我有过一次不寻常经历-- 月经来临前,我的手指突然无缘无故地肿了起来。那次异常让我去医院做了检查,也第一次知道,自己的卵巢上长了一个囊肿。

    The doctor told me it was small and did not need treatment. I only needed to come back every six months and keep observing it.医生告诉我,囊肿不大,不需要治疗,只要每半年复查一次,继续观察就好。

    I believed that advice. I held on to the words “keep observing” like a small promise that everything would be all right.我相信了。把“继续观察”这四个字当作一颗定心丸,塞进了心里

    So I waited. And I watched.

    From then on, I followed the recommendation carefully. Every six months, I returned for another checkup. For six years, the cyst stayed around three centimeters, without any obvious change.从此,我认真按照医生的建议,每半年复查一次。六年里,囊肿始终维持在三厘米左右,没有明显变化。

    Again and again, the reports described an “ovarian cyst, suspected endometriosis.” But no one ever clearly said to me: “This is endometriosis.”每一次检查,报告上都写着“卵巢囊肿(疑内异)”,却始终没有人明确告诉我:“这是子宫内膜异位症。”

    The message I received was always the same: no urgent intervention was required. So I truly believed it was just a minor imperfection inside my body, a quiet visitor that time might eventually forget.医生们的态度一直是“无需强制干预”, 于是我真的相信,这不过是我身体里一个无伤大雅的过客,一个可以被时间遗忘的小瑕疵。

    Then, in 2025, everything changed.

    I believe God opened a new door for me that year, allowing me to meet Professor Adel Shervin, an internationally respected expert in minimally invasive gynecologic surgery.直到2025年,上帝为我打开了一扇新的门,让我有机会认识国际妇科微创专家 Adel Shervin 教授。

    Only then did I realize, with shock, that this disease was not the “well-behaved child” I had imagined it to be. Endometriosis can spread silently through the body, like vines growing in the dark. For the first time, I began to truly understand what endometriosis was.也是在那一年,我才震惊地发现,它根本不是我以为的那个“乖孩子”。它会像藤蔓一样,在身体里悄无声息地蔓延。我第一次真正了解子宫内膜异位症。

    What rose in me at that moment was more than shock. It was a kind of grief, a deep sense of being wronged by time, and an even deeper regret.那一刻,我心里涌上的,不仅是震惊,还有一种说不出的委屈 ,和深深的遗憾。

    For the first time, I felt seen.

    I was fortunate to meet Professor Shervin, a world-renowned gynecologic specialist. After a detailed assessment, he told me honestly that after years of disease progression, complex adhesions had likely formed inside my pelvis.幸运的是,我遇到了Adel Shervin教授——一位公认的全球顶尖妇科专家。在详细评估后,他坦率地告诉我,由于病灶多年的侵蚀,我的盆腔内很可能已经形成了复杂的粘连。

    A surgery like this, he explained, could be extremely difficult. A small mistake could injure the bowel, ureter, or even major blood vessels. It is considered one of the most challenging procedures in minimally invasive gynecologic surgery.这样的手术,稍有不慎,就可能伤及肠道、输尿管,甚至重要血管,是妇科微创手术中公认最具挑战性的手术之一。

    But for decades, Professor Shervin had treated complex cases like mine. Every operation, every decision, every judgment was grounded in thousands of accumulated experiences.但几十年来,他始终在处理这样的复杂病例。每一台手术、每一次判断,都沉淀着成千上万次经验的积累。

    For the first time, what I felt was not fear. It was relief. Someone finally saw the disease clearly, and knew how to help me.第一次,我感受到的不是害怕,而是安心。因为我知道,终于有人真正看见了我的疾病,也知道该如何帮助我。

    The diagnosis became real.

    Before surgery, the examinations showed that I had developed deep infiltrating endometriosis (DIE). At the same time, my AMH level (Anti-Müllerian Hormone), a marker of ovarian reserve, had already declined significantly. It meant that my ovarian reserve had been substantially affected.术前检查显示,我已经发展为深部浸润型子宫内膜异位症(DIE),与此同时,我的 AMH(抗缪勒管激素,Anti‑Müllerian Hormone)已经明显下降,这意味着我的卵巢储备功能已经受到了实质性的影响。

    That was the moment I felt overwhelming regret.那一刻,我感到无比后悔。

    I regretted the years that had been gently brushed aside by the words “keep observing”, years that should have been protected, not lost.后悔那些年,被”继续观察”四个字轻轻带过的、本该被珍惜的时光。

    And then I finally understood.直到那时,我才终于明白:

    I had thought that the disease and I were waiting together.原来这些年,并不是疾病陪着我一起等待。

    But the truth was this:

    I was the one waiting.
    The disease never was.
    真正一直在等待的,只有我。
    而疾病,从来没有停下来。

    In May 2026, I underwent surgery.2026年5月,我接受了手术。

    The surgery was successful. Today, I am recovering well, and I have found hope for the future again.手术很成功,如今我恢复得很好,也重新找回了对未来的希望。

    Fei seated in a hospital room, speaking with Prof. Adel Shervin during her recovery after surgery.
    Fei sharing a quiet moment with Prof. Adel Shervin during her postoperative recovery in hospital.

    This is my real story. Every moment of confusion, every mistaken reassurance, every tear is part of it. I am not telling it to blame anyone. I am telling it because somewhere, another girl may be quietly waiting in “observation,” just as I once did.这是我的真实故事,每一段迷茫、每一次误判、每一滴眼泪,都刻在里面。我把它讲出来,不是为了责怪谁,而是希望那些和我当初一样,在“观察”中安静等待的女孩们,能早一点听见真相,早一点抱紧自己。

    I hope she hears the truth sooner. I hope she holds herself closer. I hope she knows that some diseases do not simply go away, and that some truths need someone to speak them aloud for those who are still waiting in silence.因为有些病,不会自己离开;而有些话,需要有人站出来,替那些还在沉默中等待的人,先喊出声来。

    💜 If I had known this six years ago, perhaps today would be different.💜 如果六年前我知道这些,也许今天会不一样

    Share your story

One voice can help someone else feel less alone. Every story shared helps another person feel less alone.每一个被讲出来的故事,都可能让另一个女孩,不必再独自等待。