女性健康:被忽视的系统性问题
Nam Kiwanuka: 您正在收听《Mistreated》。我是Nam Kiwanuka。
Original English
Nam Kiwanuka: You're listening to Mistreated. I'm Nam Kiwanuka.
女性虽然寿命更长,但她们更有可能患有慢性疾病,更容易被误诊,有时需要数年甚至数十年才能获得诊断,并且对药物产生更多的副作用。
Original English
While women tend to live longer, they're more likely to live with chronic illnesses, be misdiagnosed, face years, sometimes decades in getting a diagnosis, and have more side effects to medication.
根据美国国立卫生研究院(NIH)的数据,由于以往的大部分研究都是在男性身上进行的,治疗方法也是基于男性模型设计的,我们在理解男性疾病机制方面取得了长足进展。因此,鉴于基础研究主要由男性主导,女性治疗效果不佳也就不足为奇了。这项研究来自NIH,该机构曾在1993年强制要求将女性纳入临床试验。
Original English
According to the National Institutes of Health, the NIH, because much of the previous work has been done in males and treatments have been designed in male models, we have come a long way in understanding disease mechanism in males. Therefore, it is no wonder that treatments fail to work well in females given basic research is dominated by work in males. That research is from the NIH, which is the same body that mandated women to be included in clinical trials in 1993.
医疗性别歧视(medical misogyny)是一个用来描述女性寻求医疗保健时所发生情况的术语,女性的身体疼痛被忽视,并常被病态化为“都是她自己想出来的”。由于男性身体一直是医学的默认标准,主要影响女性的疾病,如多囊卵巢综合征(PCOS)和子宫内膜异位症(endometriosis),研究不足、理解不深、资金匮乏。对于子宫内膜异位症和埃勒斯-丹洛斯综合征(Ehlers-Danlos syndrome),诊断可能需要数年甚至数十年。
Original English
Medical misogyny is a term that has been used to describe what happens when women are seeking health care, and women's physical pain is dismissed and often pathized into something that is quote all in her head. Because the male body has been the default in medicine, conditions that primarily impact women like PCOS and endometriosis are underresarched, misunderstood, and underfunded. And for endometriosis and Ehlers-Danlos syndrome, a diagnosis can take years, even decades.
在此期间,患病者却被期望忍受疼痛和衰弱的症状。即使是男性中普遍理解的疾病,如自闭症(autism)、多动症(ADHD)和心血管疾病(cardiovascular disease),在女性中也常被误解、误诊和漏诊。2025年5月,加拿大广播公司(CBC)报道称,加拿大卫生研究院(CIHR)自2010年起就规定将性别作为授予研究资助的标准。尽管如此,一组研究人员在2023年发现,只有不到6%的加拿大健康研究资金用于女性健康。虽然女性健康研究主要集中在妊娠、乳腺癌和妇科癌症上,但医生和研究人员希望将研究领域拓宽,纳入偏头痛和慢性盆腔疼痛等疾病,这些疾病研究表明在女性中更为常见。这种健康差距不仅影响患者,也影响到女性医生在手术室的工作。
Original English
All the while, the individual with it is expected to live with the pain and the debilitating symptoms. Even conditions that are commonly understood in men like autism, ADHD, and cardiovascular disease are misunderstood, misdiagnosed, and underdiagnosed in women. In May 2025, the CBC reported that the Canadian Institutes of Health Research, the CIHR, has mandated the inclusion of sex and gender as criteria for awarding grants since 2010. Despite that, a group of researchers found in 2023 that less than 6% of Canadian health research funding went to women's health and that while women's health was focused on pregnancy, breast, and gynecological cancers, doctors and researchers wanted the field to be broadened to include conditions like migraines, and chronic pelvic pain, which studies show are more common amongst women. This health gap not only impacts patients, it carries into the operating room for female physicians.
在接受加拿大医学协会(Canadian Medical Association)采访时,卡尔加里的妇产科医生Fiona Matal博士这样说:“性别歧视存在的时间比医学本身更长。虽然我们取得了进步,现在医学院课堂上男女学生比例更均衡,但在更高层的行政管理层面,即决定医疗资金流向的地方,差异依然存在。手术室预算缺乏支持,性健康和生殖健康方面仍存在不平等,这超出了女性健康的范畴。我们一直在为患者争取医疗服务。此外,手术中使用的设备是为男性外科医生设计的,这给女性外科医生带来了挑战。”因此,不仅女性患者在获得所需护理方面面临挑战,女性临床医生也面临额外的障碍。2026年1月的一项最新研究发现,尽管女性家庭医生花更多时间照顾患者,但她们的收入却更少。在本期节目中,我们采访了Tracy Lindenman,她的著作是《Bleed, Destroying Myths and Misogyny in Endometriosis Care》。我们与她探讨了她的疼痛如何被忽视了数十年,以及她花了24年才被诊断出子宫内膜异位症和子宫腺肌症。
Original English
In an interview with the Canadian Medical Association, Dr. Fiona Matal, an obstatrician gynecologist in Calgary, said this. Sexism has been around longer than medicine itself. While there has been progress, we are now seeing more females and males in medical school classrooms. Disparities still exist at higher levels of administration where decisions are made about where health care funding goes. There is a lack of support in operating room budgets and there are still inequalities specific to sexual and reproductive health beyond women's health. We are constantly struggling for access to care for our patients. In addition, equipment used in surgery is designed for male surgeons resulting in challenges for the female surgeons. So, not only are women patients experiencing challenges in accessing the care they need, female clinicians are also facing additional roadblocks. A recent study from January 2026 found that while female family doctors spent more time caring for patients, they earned less money. On today's episode, we speak with Tracy Lindenman about her book, Bleed, Destroying Myths and Misogyny in Endometriosis Care. We talked to her about how her pain was dismissed for decades and how it took 24 years to be diagnosed with endometriosis and adenomyosis.
她告诉我们,对她病情的缺乏了解导致她不得不为自己争取了几十年,以及这如何改变了她对医生角色的看法,以及她最终决定进行子宫切除术(hysterectomy)的原因。Tracy Lindenman现在加入我的节目。
Original English
She tells us how the lack of knowledge about her condition led to decades of her having to advocate for herself and how that changed how she sees the role of doctors and why she ultimately decided to get a hysterectomy. Tracy Lindenman joins me now.
漫长的诊断之路与愤怒
Nam Kiwanuka: Tracy Lindenman,欢迎来到播客。
Original English
Nam Kiwanuka: Tracy Lindenman, welcome to the podcast.
Tracy Lindenman: 谢谢您的邀请。在书的结尾,您写道:“我35岁时才被诊断出来,等了24年。被剥夺了那段时间可能是我一生中最大的不公。”您11岁时第一次来月经,从14岁起就一直经历这种慢性疼痛。35岁时终于得到诊断,对您来说是怎样的感受?
Original English
Tracy Lindenman: Thank you for having me. Towards the end of the book, you write, "I was diagnosed at 35 after waiting 24 years. Being robbed of that time is probably the greatest injustice of my life." You had your first menstrual cycle when you were 11, and you had been experiencing this chronic pain from the time that you were 14 years old. What was it like for you to finally get receive that diagnosis at age 35?
Tracy Lindenman: 感觉就像是,告诉我一些我不知道的事情。我早就知道自己得了什么病,对吧?只是需要有人来盖章确认,对吧?最终告诉我,医疗系统终于承认我身体有问题,而且他们可能会对此采取一些措施。所以当它发生时,你知道,躺在检查台上,一个经阴道超声探头在我体内,我当时非常愤怒。我就是那么愤怒。花了太长时间了。是的,我没有感到解脱,我感到愤怒。
Original English
Tracy Lindenman: It was like, tell me something I don't know. I already knew what I had, right? It was just getting someone to rubber stamp it, right? And to tell me that finally the system recognized that something was wrong with me and that, you know, they were maybe going to do something about it. So when it happened, you know, like laying on the table, this transvaginal ultrasound transducer inside me, right? And I was just so angry. Like I was just so angry. It had taken so long. Yeah, I wasn't relieved. I was angry.
Nam Kiwanuka: 跟我多说说这方面,因为您在序言中也提到了愤怒。
Original English
Nam Kiwanuka: Tell me more about that because you also talk about anger in the prologue.
Tracy Lindenman: 当女性患有任何慢性疾病时,你被告知要忍着,你所感受到的并没有那么糟糕。你知道,就像之前一集里说的,也许一切都在你脑子里,或者你所经历的是精神疾病而不是身体疼痛。有太多事情被要求你去说去感受,但愤怒绝不是其中之一,对吧?女性从不被允许愤怒,你知道,尤其是,可能您也有同样的经历,有色人种女性绝不能对医生发火,因为,你知道,这在这个世界上对女性来说不是一种可以接受的方式。
Original English
Tracy Lindenman: When women have any kind of chronic illness, and you're told to suck it up, that what you feel isn't really that bad. You know that to a previous episode it's all in your head maybe even or maybe what you're experiencing is mental illness and not physical pain. Like there are just so many things that you're told to say and feel but anger is never one of them, right? Women are never allowed to be angry and you know especially you know probably your experience too women of color can never be angry right with a doctor because you know like it's just not an acceptable way for women to be in this world.
愤怒的力量
Nam Kiwanuka: 您在书中写道,愤怒可以是力量。愤怒如何能成为力量?
Original English
Nam Kiwanuka: You write in your book that anger can be power. How can anger be power?
Tracy Lindenman: 愤怒,首先,这是对The Clash乐队歌词的引用,这也是贯穿全书的一个潜在主题,就是我对朋克摇滚的热爱。但愤怒也是力量,因为你终于可以按照自己的方式表达自己了,这有点像你不再那么在乎别人怎么看你的感受了,对吧?你有点像超越了一些为你设置的障碍,也许是你自己为自己设置的障碍,你终于能够说出你真正想说的话,因为你已经被虐待了这么久,对吧?那又有什么区别呢?你尝试过做一个好病人,你尝试过做一个温顺的病人,你尝试过做各种不同的事情,然后你终于受够了,你就会想,你知道吗,我就要像我感受到的那样愤怒。这有时是很有回报的。
Original English
Tracy Lindenman: Anger, number one, that's a lyrical reference to The Clash, which is an underwriting theme throughout the book is like my love for punk rock, but also anger's power, you know, because finally you get to express yourself the way that you are and it's a little bit like you no longer care as much about what other people think of your feelings, right? Like you kind of get to transcend some barriers that had been put there for you and that maybe you put there for yourself and you're finally able to say the things that you really want to say and because you've already been mistreated right for so long like what's the difference? Like you've tried being the good patient, you tried being the docile patient, you've tried being, you know, all these different things and then finally you're fed up and you're like, you know what, I'm just going to be as angry as I feel. And that's rewarding sometimes.
Nam Kiwanuka: 甚至想到您的情况,您11岁时第一次来月经。14岁时开始感到这种疼痛。我认为当我们谈论慢性疼痛,比如子宫内膜异位症时,我们并没有真正想到它会发生在年轻女性身上。而根据我所了解到的,很多时候,对于最终患有子宫内膜异位症的女性来说,它开始得很早。所以,在那些塑造人格的岁月里,当您本应专注于青少年应该专注于的事情时,您却总是在疼痛中。我认为这也会教给您一些东西,当人们不相信您的时候,尤其是医生。
Original English
Nam Kiwanuka: To even think about your situation because you had your first cycle at 11 years old. You started feeling this pain when you were 14 years old. And I think when we talk about chronic pain, something like endometriosis, we don't really think about it happening to younger women. And from what I've been learning about it is that a lot of times for women who end up having endometriosis, it starts very young. And so you during those formative years where you should be concentrating on what I guess what teens are supposed to concentrate on, you're always in pain. And I think it's also like it teaches you things when people don't believe you. Especially doctors.
Tracy Lindenman: 是的。是的。所以,我14岁时开始寻求医疗护理,但我的月经从一开始就很糟糕,非常非常长,非常非常痛。所以,你知道,11岁时,我家里所有人都说:“哦,那很正常。”就像,那只是成为女人的一部分,你知道,因为当你第一次来月经时,你会说:“恭喜你,你是个女人了。”你就会想:“我明明还是个孩子。我才11岁,但谢谢。”但是,是的,你周围的很多人都说这很正常,因为也许他们也有过糟糕的月经。子宫内膜异位症有遗传成分。
Original English
Tracy Lindenman: Yeah. Yeah. So, I started seeking medical care when I was 14, but my periods were awful from the very beginning, like really, really long, really, really painful. And, so, you know, being 11 and saying that, you know, everyone in my family said, "Well, that's normal." Like, that's just part of being a woman, you know, cuz of course when you get your first period, you're like, "Congratulations, you're a woman." You're like, "I'm literally a child. Like, I'm 11 years old, but thank you." But yeah like you know a lot of people in around you say that it's normal because maybe they also had terrible periods. There is a hereditary component to endometriosis.
他们把它常态化了,因为他们的父母把它常态化了,他们的父母的父母也把它常态化了。所以你真的不知道它追溯到多远。你知道,那种痛苦和折磨,因为每个人都被告知这是正常的,它就应该那么痛,而且月经就应该持续那么多天。然后,学习什么是真正的正常,你知道,在第一次月经很久之后才学到,你知道,在我30多岁的时候才学到,什么是正常的失血量,什么是正常的月经天数,什么是正常的疼痛程度?我当时就想,这从来都不正常。然而我周围的每个人,包括我的母亲,都被告知这是正常的。所以,你知道,然后医生也这么说,当然,但是,你知道,尤其是在魁北克生活,获得医疗服务是另一回事。
Original English
That you know they've normalized it because their parents normalized it because their parents normalized it. And so you really have no idea of how far back it goes. The pain and suffering because everyone has just been told that it's normal, that it's supposed to be that painful and you know those periods are supposed to be that many days. And learning what's actually normal, you know, learning that so far after my first period, you know, learning that in my 30s, like what's actually a normal amount of blood to lose, like what's a normal number of days to have a period, what's a normal amount of pain to feel? And I was like, this was never normal. But and yet everyone around me, including, you know, my mother had been told that it was. And so, you know, and then the doctors say it too, of course, but you know, living in especially living in Quebec, having access to medical care was a whole other story.
医疗系统的不作为与认知不公
Nam Kiwanuka: 您写道,那种“别无选择”的感觉,以及“对这一切做一番悲观的计算,就会清楚地发现,我们所得到的护理来自一个根本不关心我们的系统”,而且“认为在一个充满权力滥用的世界里,医学 somehow 能够幸免是妄想”。医生被患者和社会赋予了巨大的信任和权力,有些医生滥用这种权力。嗯,我认为大多数人希望相信,如果你感到疼痛或需要健康护理,医生可以帮助你。这不仅是他们的工作,也是他们的道德责任。您会如何描述您与医生打交道、试图获得护理的经历?是的,我们确实认为这应该是他们的道德责任。老实说,他们为什么还要从事医学呢?很多医生会告诉你,他们这样做是因为他们想帮助别人。
Original English
Nam Kiwanuka: You write the feeling of quote having no options and that quote do the dismal math on all this and becomes clear we're being given care by a system that fundamentally does not care about us and that quote it's delusional to think that in a world full of abuses of power that medicine is somehow exempt doctors are given enormous trust and power by patients and society at large and some doctors abuse it out well um I think most people want to believe that if you are in pain or need care for your health that doctors can help you. It's not only their job but their moral responsibility. How would you describe your experiences with doctors trying to access that care? Yeah, we we do think it's should be their moral responsibility. Why else did they get into medicine honestly and a lot of doctors will tell you that they did it for because they wanted to help people.
Tracy Lindenman: 但最终发生的事情,你知道,通过很多不同的事情,是这并没有发生在患者的经历中。你知道,医生所拥有的知识被视为房间里的一种权威元素,而患者对自己经历的知识则根本不被视为知识,对吧?我书中提到了一个概念,叫做认知不公(epistemic injustice)。你知道,认知意味着你如何知道你所知道的?但不公是指有些人的知识形式根本不被承认为知识。你知道,当你和医生在一个房间里,他们会说:“我去过医学院。你呢?”你就会说:“不,但我24/7都生活在这个身体里。”他们就会说:“是啊,但我去过医学院。”就是这种对这些系统性力量的维护,在医患互动中,你知道,在这些封闭的环境中。这只是一对一的经历,但它也贯穿整个系统,对吧?很多人与医生没有争议关系的人,很乐意接受那种“我掌握着关于你的知识,可以给你”的态度。但是当你不断被告知你对自己的了解不是真实或无效的时候,你就会开始真正质疑这个系统是如何运作的。
Original English
Tracy Lindenman: But what ends up happening through a lot of different things is that that's not what ends up happening in the patient's experience. And you know the knowledge that doctors have is seen as kind of like an authoritative element in the room whereas the knowledge that patients have about their own experiences is not considered knowledge at all. Right? And there's this concept that I talked about in the book a little bit called epistemic injustice. You know, epistemic meaning like how do you know what you know? But injustice is like there are some people whose forms of knowledge are not recognized as knowledge at all. And you know when you're in a room with a doctor and they're like well I went to school. Did you? And you're like no but I live in this body 24/7. And they're like yeah but I went to school. And and just that upholding of, you know, these systemic forces in that in that doctor encounter, you know, in these closed door environments. And that's just a one-on-one experience, but it's also something that reverberates throughout the system, right? And like a lot of people who don't have contentious relationships with doctors are comfortable receiving that kind of I I got the knowledge to give to you about you. But when you're constantly told that what you know about yourself isn't real or valid, then you start really questioning how the system operates.
是的,在这种情况下,权力滥用变得更加明显,因为他们没有以你希望被倾听的方式倾听你。所以,你知道,医生这样做有很多原因。你知道,培训系统对他们并不友好。我理解这一点。他们也被告知,医学的社会元素从未得到充分的考虑。你知道,如何对待患者不是医学知识,那是社会知识,而医生的社会化管理得并不好。但医学的很大一部分是人际关系。这不是你在手术室、教科书或尸检室学到的东西,对吧?它实际上是那些没有得到足够关注的社会方面。所以,你知道,这就是一切的体现。这就是不平等真正体现在你如何被对待,或者我猜,在诊所里如何被虐待。那些微小的权力动态,你知道,尤其对我来说,我来自一个父母不怎么样的家庭,对吧?他们有药物滥用问题等等。所以我已经在家里感到被忽视了。然后这种权力动态又在医疗系统中重演。一次又一次地被这些本应关心你的系统告知,他们实际上并不关心你。嗯,这一定也很困难,因为您在书中写到了您经历过的不同体验。我不想用我的话来形容,
Original English
And yeah, like the abuse of power becomes more obvious in those situations because they're not listening to you in the way that you want to be heard. And so, you know, there are a lot of reasons why doctors may do that. You know, the training system is not kind to them. I understand that. They're also told like the social element of medicine is really never fully accounted for. You know, the how do you treat patients is not medical knowledge. That's social knowledge and the socialization of doctors is not really necessarily well managed. But like so much of medicine is interpersonal. It's not stuff you learned in an operating room or in a textbook or in an autopsy room, right? Like it's actually the social stuff that doesn't get enough attention. And so, you know, that's where it all plays out. Like that's where the inequality really plays out in in how you know you get treated in or mistreated I guess in the doctor's office. And those little power dynamics, you know, especially for me, like I came from a home where like I didn't have great parents, right? And they had substance abuse problems and stuff like that. And so I already felt neglected at home. And then that power dynamic was replicated in the medical system. And it was just the same thing over and over again being told by, you know, these systems that, you know, they're supposed to care for you and that they actually don't. It must have been really difficult too because throughout the book you write about different experiences that you had just the like the I don't want to use the like put words in your mouth,
Nam Kiwanuka: 但您有一本黑皮书,记录了您每次看医生的笔记。
Original English
Nam Kiwanuka: But you had a black book that you kept notes of your visits to the doctors.
Tracy Lindenman: 在某个时候,一位医生建议您可能患有边缘性人格障碍(borderline personality disorder),
Original English
Tracy Lindenman: At one point a doctor suggests that maybe you have borderline personality disorder
Nam Kiwanuka: 因为我猜他们不喜欢您对他们不作为的反应。然后有一次您在急诊室大出血,一位护士却对您的情况不屑一顾,然后当着您的面谈论您,而您能听到。
Original English
Nam Kiwanuka: Because I guess they didn't like how you were reacting to what they were not doing for you. And then at one point you're in the ER and you're hemorrhaging and a nurse dismisses what's happening with you and then proceeds to have a conversation about you where you can hear.
Tracy Lindenman: 是的。
Original English
Tracy Lindenman: Yes.
Nam Kiwanuka: 您能听到对话。我只想多谈谈这一点,因为当您经历一个似乎不了解您身体状况的医疗系统时,然后您试图为自己争取,因为我不知道您怎么样,但我是在一个家庭中长大的,在那里您要尊敬权威,尊敬医生、老师等权威人士。而反驳医生所说的话,或者当我的疼痛被忽视时,对我来说真的非常令人紧张。您认为这如何改变了您?
Original English
Nam Kiwanuka: You can hear the conversation. I just want to talk a little bit more about that because when you go through a medical system that doesn't seem to understand what is happening to your body and then you try to advocate for yourself because I don't know about you but like I was raised in a family where you look to authority and you respect authority people and authority figures like doctors, teachers, etc. And it's really nerve-wracking. It was really nerve-wracking for me to push back against what the doctors were were saying or when I was being my pain was being dismissed. How do you think that has changed you?
自我信任与患者倡导
Tracy Lindenman: 我认为最终的经历让我更加信任自己,
Original English
Tracy Lindenman: I think ultimately the experience made me trust myself more
Nam Kiwanuka: 在理解我的身体感受方面,你知道,什么是正常的,什么是不正常的,什么时候该推进,什么时候该退让,诸如此类。很多患有任何慢性疼痛疾病的人都会经历寻求护理然后又退缩的循环,因为不断接触医生和类似的事情让人非常不堪重负。所以,我总是有点,嗯,不总是,但最近我开始有点像,我需要从医生那里休息一下,我不能再这样了。所以我取消预约或者推迟预约等等。因为我没有足够的心理承受能力来处理像长期慢性疼痛这样的“项目”,对吧?因为这是我的日常经历,对吧?现在我不再来月经了,因为我36岁时进入了手术性绝经,但我也有慢性背部疾病。所以,我只是尽力以我能做到的方式来管理它,那些对我来说更容易获得且侵入性更小的方式,然后只有当我碰壁,需要真正咨询医疗专业人士时才寻求护理。所以,信任自己来判断这一点,就是我现在看医生的方式。不管是好是坏吧。
Original English
Nam Kiwanuka: In terms of understanding how my body feels, you know, what's normal, what's not normal, when to push, when to back off, that kind of thing. A lot of people who have any kind of chronic pain condition kind of go through cycles of like seeking care and then pulling back because it's just very overwhelming to like constantly be exposed to doctors and and that kind of stuff. And so like I've always just kind of uh well not always but more recently I've started kind of being like I need to take a break from doctors like I can't be ex like so I'll cancel appointments or move them out and that kind of stuff. Um because I don't have like the mental capacity to like deal with the project that is like long-term chronic pain, right? It's like cuz it's my daily experience, right? Like well now like I don't have periods anymore because I went into surgical menopause when I was 36 but I also have like a chronic back condition right so like just trying my best to like manage it in the ways that I manage it that are accessible and less invasive to me and then only seeking care when I've like hit a wall and I need to I need to actually like consult a medical professional and so trusting myself to kind of be the judge of that is is kind of how I approach seeing doctors now. For better or worse, I guess.
Nam Kiwanuka: 您写道:“直到最近,我才相对安静地经历了我的医疗挣扎。作为一名‘严肃记者’,写着‘严肃题材’,我不得不问自己,我希望人们了解我的身体多少。我曾因为让疼痛贯穿我的生活而感到虚弱。很长一段时间,我感觉如果我打开这扇门,终于谈论它,我的健康问题就会膨胀并定义我。更糟的是,它们可能会改变人们对我的看法。我可能会因为挑战一个社会普遍认为是为人类福祉而构建的利他主义力量的系统而显得疯狂。”首先,我非常理解这一点。当您已经感到如此脆弱时,很难再把自己暴露出来。那么,为什么还要把自己暴露出来?为什么要写这本书呢?
Original English
Nam Kiwanuka: You write quote, "I lived my medical struggle relatively quietly until recently as a serious journalist, and serious journalist is capitalized. As a serious journalist writing about serious stuff, that's also capitalized." I had to ask myself how much I wanted people to know about my body. I felt weak for letting the pain reverberate throughout my life. For the longest time, it felt like if I opened the door and finally talked about it, my health problems would grow to define me. Worse, they could change how people see me. I could look crazy for taking on a system that society views as an altruistic force constructed for the good of mankind. First, I understand this so much. It's hard to put yourself out there when you already feel so vulnerable. So, why put yourself out there? Why write this book?
写书的动机:专业与个人挑战
Tracy Lindenman: 嗯,当我最终被诊断出来时,我终于觉得这个故事有了一个弧线,对吧?它就像一个缓慢的、不断攀升的感觉,就是看了一个又一个医生,然后最终的诊断就像一个高峰,我当时想,终于故事有了转折,对吧,我可以慢慢下来了。因为写一个没有弧线的故事,就会觉得这本书什么时候才能结束,对吧?所以,最终获得承认,承认我身体确实出了大问题,这给了我动力,最终说出我想说的话。
Original English
Tracy Lindenman: Um the when I was finally diagnosed, I finally felt like there was like an arc, right, to the story, right? It was just this like slow ever climbing feeling of like seeing another doctor and another doctor and another doctor and another doctor and then finally the diagnosis is almost like a peak where I was like finally there's like a turn in the story, right, where I can kind of come back down. Um, and because writing a story that doesn't have an arc, like it just feels like when does this book end, right? Um, so finally getting um the recognition that there was actually something very wrong with me uh kind of provided that impetus to um to finally say what I wanted to say.
另外,我做了这么久的记者,从没写过关于自己的事情,也从没真正写过太多关于女性健康的事情,除了新闻中的几篇报道。所以我认为是我尝试不同形式新闻的时候了,这也是我职业抱负的一部分,就是不再做日常新闻之类的东西,而是最终写一些更长篇的作品。所以,这是一个专业挑战。从个人角度来说,这也是一个挑战,因为我终于能够为这个故事画上句号,或者说某种结局。然后我想我终于有了所需的视角,关于我自己的痛苦和其他人的痛苦,你知道,去赋予它意义,对吧?而不仅仅是为此生气,而是把它与历史联系起来,与我最终联系起来的所有事情联系起来。
Original English
Also like I had been a journalist for so long never writing about myself and never writing about you know even women's health really that much beyond you know a couple stories in the news and so I thought it was time for me to try a different form of journalism like it was part of my professional aspirations as well of just instead of doing the daily news and you know that kind of stuff like be finally writing something more long form. So, it was a professional challenge. It was also the personal challenge in the sense that I finally was able to to put an end to this story or or some kind of ending anyway. And then I I think I finally had like the the perspective that I needed on my own suffering and the suffering of other people to, you know, to to make meaning of it, right? And not just to be mad about it, but to like tie it to history and to tie it to like all the things that I ended up tying it to.
Nam Kiwanuka: 在书中,您做了大量的研究。其中一部分是为了证明这不仅仅是您自己想出来的,这不仅仅是您个人的问题,而是系统性地存在了很长时间的问题,我们需要开始关注它,是吗?
Original English
Nam Kiwanuka: And in the book, you've done so much research. Was there was it was part of it for you to say this is not just in my head. This is not just a me problem. This is something that's happening systemically and has been happening for a very long time and we need to start paying attention to it.
Tracy Lindenman: 是的。书中有700多条引文,原因是我觉得我需要提供一个无懈可击的案例,对吧?我需要拿出所有证据,
Original English
Tracy Lindenman: Yeah. Like the there are like more than 700 citations in the book and the reason why is because I felt like I needed to make a bulletproof case, right? Like I needed to bring all the evidence
Nam Kiwanuka: 嗯,是为了说明这不仅仅是女性感受到的具身经验,对吧?这是一种真实存在的东西,这是我们被迫遵守的系统性父权力量的一部分。所以,将这种女权主义的表达带入所经历的事情中,对我来说是一次非常强大的经历,这也引起了我很多读者的共鸣,因为,你知道,他们一直从不同的角度看待它,从他们被告知的角度看待它,对吧?比如医生是利他主义的,他们出于所有正确的理由从事这个行业,他们只是来帮助你的,然后你就会想,嗯,是吗?
Original English
Nam Kiwanuka: Um to say like this isn't just an embodied experience that women feel right that that like it's something real like this is part of like a you know systemic patriarchal force that we are kind of made to comply with. Um, and to so to bring that like you know like feminist expression to what was being experienced was was like a really powerful experience for me and that's something that really resonated with a lot of my readers um because you know they they had been looking at it from a different angle the angle that they had been told to look at it from right like that doctors are altruistic that they get into this for all the right reasons um they're just here to help you and it's like well are Hey,
子宫切除术的决定
Nam Kiwanuka: 您26岁时决定进行子宫切除术。您是如何做出这个决定的?这个决定对您来说困难吗?
Original English
Nam Kiwanuka: When you were 26, you decided that you wanted to get a hysterectomy. How did you come to make that decision? And was it a difficult one for you to make?
Tracy Lindenman: 不,不难,因为我从来不想要孩子。对我来说,这只是逻辑上的事情,对吧?我月经很糟糕,我又不想要孩子。我们为什么不直接把那个让我月经糟糕的东西去掉呢?对我来说,这太理所当然了。你知道,我获得医疗服务的途径很困难。尤其是在蒙特利尔长大,加拿大的医疗系统就不怎么样,但在魁北克更是糟糕透顶。所以我想,与其让我一次又一次地经历所有这些预约,为什么我们不一劳永逸地解决这个问题呢?于是我把它作为解决方案提供给我的医生,心想:“我提出这个主意是不是很聪明?”然后她却说:“你疯了。你会改变主意的。你会想要孩子的。”而她只认识我几年,每次只知道我15分钟。她对我说这话,而我当时已经活了26年,一直了解我自己。我当时想:“你怎么比我更了解我自己?”
Original English
Tracy Lindenman: No, it wasn't cuz I never wanted kids. And to me it was well, it's just logical, right? Like I have terrible periods and I don't want kids. Why don't we just get rid of the thing that's giving me the terrible periods? Like to me it was such a like you know my access to the medical system was you know hard. Being able to especially growing up in Montreal like you know the medical system in Canada is like not great but in Quebec it's especially awful. And so I was like instead of making me go through all these appointments like over and over again like why don't we just like solve this once and for all you know? And so I offered it as a solution to my doctor being like, "Am I not so smart for coming up with this idea?" Uh, and then she was like, "You're crazy. You're going to change your mind. You're going to want kids." And for someone who only knew me 15 minutes at a time for a couple years. To say that to me who has known myself for all of the 26 years at that point I had been alive. I was like, "How do you know me better than I know myself?"
Nam Kiwanuka: 嗯,有一次您让男朋友给您的医生写了一封信。您为什么那样做?
Original English
Nam Kiwanuka: Well, at one point you asked your boyfriend to write a letter to your doctor. Why did you do that?
Tracy Lindenman: 是的。那是给外科医生的。因为我终于“升级”到去看外科医生,咨询手术的事情,对吧?所以我想,我得确保第一次就做对。我不想留下任何未解决的问题。所以,我的男朋友,当时我们已经不在一起了,但当时的男朋友,我们俩都不想要孩子。我们这辈子从来没想要过孩子。所以我当时想,但他不能陪我去预约。所以我说:“如果你不能来,你至少能写这封信吗,以防我需要?”对吧?所以我把它叠起来放在我的钱包里。然后,你知道,我当时想,我不确定我是否需要它。但后来我确实提到了这封信,对吧?因为我当时正在和医生谈话,他说:
Original English
Tracy Lindenman: Yeah. So, that was the surgeon. Because I had finally like graduated to seeing a surgeon to consulting a surgeon about having surgery, right? So, I was like, I want to make sure I do it right the first time. I don't want to like leave anything on the table or anything not addressed, right? And so, my boyfriend couldn't like my boyfriend at the time, we're not together anymore, but my boyfriend at the time like we we both didn't want kids. We had never wanted kids in our entire lives. And so I was like, but he couldn't come with me to the appointment. So, I was like, "Can you if you can't come, like, can you at least write this letter just in case I need it?" Right? So, I had it in my purse folded up. And, you know, I was like, I'm not sure if I'm going to need it. But then I ended up referencing the letter, right? Because I was like talking to the doctor and he was like,
Nam Kiwanuka: 你知道,是的,我们做手术吧。做你想要的手术。我当时想:“终于!”你知道,然后我开玩笑地提到了我钱包里的那封信,他说:“哦,你不需要那个。”
Original English
Nam Kiwanuka: You know, yeah, let's do the surgery. Like, let's do the surgery that you want. And I was like, "Finally." You know, and and then I kind of joked about the letter in my purse and he was like, "Oh, like you don't need that here."
Tracy Lindenman: 但我不知道,我不知道我是否需要它,这说明了更多关于
Original English
Tracy Lindenman: But I didn't know the like the fact that I didn't know if I would need it or not like says more about
Nam Kiwanuka: 是的。
Original English
Nam Kiwanuka: Yeah.
Nam Kiwanuka: 但您最终遇到了一位成年人,他说:“这是您的身体,您的选择。”这太棒了。我只是想确保,对于所有听众,我们都知道子宫切除术并不能治愈子宫内膜异位症。您当时知道这一点吗?
Original English
Nam Kiwanuka: But it's great that you finally ended up with an adult who was like, "It's your body, your choice." Um just I just want to also u make sure that for anyone who's listening that we know that um uh hysterectomies don't cure endometriosis. Did you know that at the time?
Tracy Lindenman: 不。嗯,但我也认为,对我来说,它也具有象征意义,我需要摆脱它,对吧?就像对我的经历做些什么。最终,这是正确的决定,因为它极大地改变了我的生活。我还患有,正如我后来了解到的,子宫腺肌症和子宫内膜异位症。我两者都有。我的很多症状,很多消化问题,医生当时只是说:“哦,我猜是肠易激综合征(IBS)。”但实际上是子宫内膜异位症。因为我的结肠上也有子宫内膜异位症。我的结肠上的子宫内膜异位症斑块与我的子宫融合在一起,并把我的子宫向后拉。所以我有很多奇怪的症状和疼痛与之相关,切除子宫消除了这些问题,对吧?因为它不再被向后拉。子宫腺肌症,你知道,是一种子宫内部的现象,也通过子宫切除术得到了解决。
Original English
Tracy Lindenman: No. Um, but also I think I think I had like to me it was also symbolic like I needed to get rid of it, right? Like to like do something about um what I was experiencing and in the end it was the right call because it drastically changed my life. Um, I also had, as I learned, adenomyosis, uh, and endometriosis. I had both. Um, and the a lot of my symptoms, a lot of the digestion problems that I had that, you know, the doctor was just like, "Oh, I guess it's just IBS." Um, were actually endo. Uh, because I had endo on my colon. Uh, and my the endo, like the plaque of endo on my colon was, uh, fused to my uterus and it was pulling my uterus backwards. Um, and so I had a lot of weird symptoms and pains associated to that and removing the uterus eliminated that, right? Because it was no longer being pulled back. Um, and you know, the adenomyosis, which is, you know, an inside the uterus kind of phenomenon, uh, was addressed by the hysterectomy. So,
Nam Kiwanuka: 哦,我也有那个“有趣的”病。嗯,所以当您说IBS时,我有点笑了,因为我不知道我是否遇到过一个不是医生的女性,没有被告知您患有IBS,结果却是子宫肌瘤(fibroids)、多囊卵巢综合征(PCOS)或子宫内膜异位症。您写了一些让我为您感到心碎的话。当谈到您的子宫切除术对您的影响时,您描述道:“子宫内膜异位症就像我床下的一个巨大怪物,每当我关灯时,它的影子就会爬上我生活的墙壁,我无法看透它。我可能也停止将自己视为一个完整的人。”您能多告诉我一些这方面的事情吗?
Original English
Nam Kiwanuka: Oh, I had that fun one, too. Um, it's so I I giggled a little when you said IBS because that's something I like I I don't know if I've ever met a woman who's not a doctor hasn't said you have IBS and it turns out to be fibroids, PCOS, or endometriosis. You write something that made me feel heartbroken for you. Um, when talking about how your hysterectomy has impacted you, you described that quote, "Indendometriosis was just a massive monster under my bed, it shadows creeping up the walls of my life whenever I shut off the light that I wasn't able to see beyond it. I may have also stopped seeing myself as a whole person. Can you tell me more about this?"
与子宫内膜异位症共存:生活被疼痛掌控
Tracy Lindenman: 子宫内膜异位症就像这样一种东西。我的子宫切除术已经五年了,所以我的生活在那段时间里发生了巨大的变化。但它就像某种阻碍我做很多事情的东西,对吧?它总是提醒我哪些事情我能做,哪些不能做。或者,你知道,我也写过子宫内膜异位症如何影响我生活中的选择,比如我今晚要不要出去?我要不要和人社交?我要不要去度假?我什么时候去度假?我什么时候去旅行?我能不能把旅行安排在月经期之外,这样度假的时候就不用来月经了?
Original English
Tracy Lindenman: Andis was kind of like this thing. I mean, it's been five years since my hysterectomy, so my life has really changed dramatically in that time. Um, but like it was something that kind of stopped me from doing a lot of things in my life, right? Like that. It just felt like um like there was always like reminders of like the things I could and couldn't do or you know like I also write about how you know Endo kind of um directed like what choices I made in my own life like am I going to go out tonight? Am I going to go socialize with people? Am I going to go on vacation? When do I go on vacation? Like when do I go on this trip? Can I organize it around my period so that I don't have to have my period on uh when I'm on vacation?
所有这些持续的提醒,它总是萦绕在你的脑海中,你不断地思考它,即使你没有来月经,因为它控制了你生活的许多其他方面,对吧?所以它就是你害怕的床下的怪物,对吧?因为你预料到会经历疼痛。所以你就会想,好吧,我必须把所有这些事情都做完。我必须确保在经前综合症(PMS)开始之前做好XYZ,然后,你知道,然后我就会有几天无法工作,然后我不能去度假,我的朋友邀请我参加这个活动,但我真的不想去。所以它真的比人们想象或承认的更多地主导了你的生活,因为很多人只是觉得,哦,一个月就几天,真的没那么糟。但实际上,它是我的一生。所以,然后它会在最糟糕的时候出现,比如月经量很大,疼痛非常严重的时候,它就会出现,对吧?怪物就会说:“哈喽,我在这里。”但你总是知道它在那里,对吧?
Original English
And the um all of those like persistent reminders like it's always on your mind like you're thinking about it constantly even when you're not on your period because it controls so many other aspects of your life, right? And so it is the monster under the bed that like you fear, right? Because you're planning to experience the pain. So you're thinking about like, okay, like I have to get all this stuff done. I have to uh you know, I have to make sure that I do XYZ before, you know, the PMS starts and then um you know, and then finally I like I'll be out of commission for these days and then I can't go on vacation and my friends invited me to this thing, but I don't really feel like doing it. And so it really directs so much more of your life than than ever than people ever recognize or give credit to because a lot of people are just oh like it's a few days out of the month like it's really not that bad. It's like yeah but it's my whole life actually like and so and and then it would kind of you know at the worst times like when the periods were really heavy and the pain was really bad that's like when it started to emerge right like that's when the monster is like hello I'm here. Um, but you always know that it's there, right? Um, yeah.
Nam Kiwanuka: 是的。这是一种非常孤独的经历,我的很多友谊都因此受到了影响,因为它有点像与慢性疼痛共存。人们真的不理解它。谁想在垫子这么厚的时候去夜店呢?别说得太露骨。您写到了避孕药和Lupron。这些药物对一些人也有非常不利的副作用。然而,您得到的却是可以对身体造成其他伤害的药物,而不是针对您病情的治疗,尤其是对女性而言。
Original English
Nam Kiwanuka: Yeah. It's a very lonely experience and I've had lots of my friendships suffer because of that because it's kind of like living with chronic pain. People just don't really understand it. And who wants to go clubbing when you have like a pad this thick? Not to get too graphic. Um, you wrote about birth control pills and even Lupron. These also have really adverse side effects for some people. But yet instead of addressing the condition that you have, you're given medication that can actually create other harm for a person, especially for women.
医疗系统的守门人与治疗困境
Tracy Lindenman: 避孕药被认为是治疗子宫内膜异位症或只是痛经的一线干预措施,对吧?就像你青少年时期,一线治疗不应该是唯一的治疗。一线治疗应该是你决定进一步调查之前做的第一件事,对吧?但很多医生只停留在第一线。尤其在加拿大,我采访的很多人都有这样的经历:系统准入存在很多“守门人”现象,你知道,有那么多患有这个问题的人,为什么你不能忍着吃避孕药呢?你知道,外科医生不多,他们的等待名单很长,而且,你知道,诊断过程在很长一段时间里只涉及手术和手术设施的准入。所以,普通医生和普通妇科医生对子宫内膜异位症、子宫肌瘤或多囊卵巢综合征等一无所知,他们对系统进行了很多“守门”。
Original English
Tracy Lindenman: Birth control is supposed to be a firstline intervention for conditions such as endometriosis or just painful periods, right? Like when you're a teen, a first-line treatment is not the only treatment. A first-line treatment is supposed to be the first thing you do before you decide to investigate further, right? And so but a lot of doctors just stop at first line. And especially in Canada, the experience that a lot of the people I spoke to had was there was a lot of gatekeeping of access to the system where you know like there's so many people with this problem like you know why can't you just suck it up and take birth control like you know there not a lot of surgeons and they have really long weight lists and you know the the diagnostic process you know for the longest time exclusively involved surgery and access to surgery facilities and like and so there was a lot of gatekeeping of the system by general practitioners and generalist gynecologists who don't know anything about endometriosis or fibroids or or PCOS or anything like that.
嗯,所以这总是有点好笑,因为看全科医生也不是免费的,对吧?当你大出血时,不断去看家庭医生,或者去诊所,或者去看普通妇科医生,这都会让系统付出代价。是的。而那是最昂贵的干预措施,对吧,就是去急诊室。所以这些也不是免费的。而且,我们还交了税,他们却在保护我们,保护系统,他们阻止我们使用我们已经付费的系统,对吧?
Original English
And so like but it's always kind of funny because it's not free to see the generalists either, right? Like it costs the system something to continually go to your family doctor or to a walking clinic or to regular gynecologist when you're bleeding out. Yeah. And that's the most expensive intervention, right, is to go to the ER. And so those are those things are also not free. And also, we pay the taxes that they're protecting us, protecting the system, like they're they're preventing us from accessing a system that we paid for, right?
Nam Kiwanuka: 您希望人们了解什么,关于患有子宫内膜异位症这样的疾病,并且在一个似乎不理解它的系统中寻求所需护理的感受?
Original English
Nam Kiwanuka: What do you want people to know about what it's like to live with a condition like endometriosis and you try to get the care you need in a system that doesn't seem to understand it?
Tracy Lindenman: 就像您之前说的,这是一种非常孤独的疾病。所以,你知道,从症状出现开始,或者任何类似的疾病,比如子宫肌瘤、子宫腺肌症,任何导致非常糟糕的、不可预测的月经和疼痛水平的疾病,它都是一种非常孤立和孤独的经历。所以,你会感到沮丧,对吧?而且你也会感到沮丧,因为人们不相信你,因为人们似乎真的不理解,因为你所有的朋友和家人都说:“忍着点。每个人都会有不舒服的时候。”所以所有这些事情真的让你质疑现实,对吧?你会想:“我是不是太弱了?我是不是只是想象出来的?它真的像我感觉的那么糟糕吗?”所以,你就会陷入这种与自己内心玩游戏的境地,你尝试经历这些循环,自己解决它,尝试忽视它,尝试寻求医疗护理。然后当你受够了其中一种,你就会重新开始所有这些循环,对吧?
Original English
Tracy Lindenman: Like you said earlier, you know, it's a very lonely condition. And so, you know, from the onset of symptoms or or any kind of condition like fibroids, adenomyosis, like anything that causes like really terrible periods that are kind of unpredictable and pain levels and that kind of thing, like it's a very isolating and lonely experience. And so, you get depressed, right? And also you get depressed because people don't believe you because people don't seem to like really understand because all your friends and your family members are like just suck it up. Like everyone has a bad time. And so all of those things really make you question reality, right? You're like am I just weak? Right? Like did I just imagine this? Like is it really as bad as I feel like it is? And so there's this whole, you know, playing games with your own mind kind of situation where you try you go through these cycles of trying to address it yourself, trying to ignore it, trying to seek medical care. Um, and then you kind of restart them all when you've had enough of one, right?
精神负担与资金差距
Tracy Lindenman: 但是,你知道,多年来承受这种精神负担,因为诊断延迟据说平均是7到10年,但很多人远远超出了这个7到10年的时间范围。我不知道,我好像没有和任何人在症状出现几年内就轻松获得诊断的人交谈过。所以,是的,你只能忍受它。你认为,你知道,我的生活就会这样了,然后,你知道,你会因此感到沮丧。你会对你知道很快就会感受到的疼痛感到焦虑。对你已经感受到的疼痛感到焦虑。对,你知道,我是否能完成所有我需要或想做的事情,带着我正在经历的这些问题。但当然,你知道,大多数政府不承认子宫内膜异位症是一种残疾,所以你甚至无法获得残疾福利。所以你必须工作,即使你感觉不舒服也必须去。所以所有这些事情,它们只是堆积起来。这是一种非常累积的效应。然后去看医生,所有这些事情都发生在你的日常生活中,然后他们只看你10分钟,你被匆匆忙忙地打发走。然后他们只是听你的症状,然后说:“嗯,你希望我怎么做?”感觉就像没有人真正关心你,对吧?所以,从这个意义上说,你确实感到孤独,因为你觉得:“那些说应该关心我的人并不关心我。”如果他们不关心,我想也没人关心了,对吧?所以这感觉非常悲伤。所以,但是,就像我所有那些与医生打交道的疯狂经历,包括,你知道,我无意中听到的护士的对话,那些事情最终都成了你不寻求护理的原因,对吧?你不想去看医生,不想把自己暴露在这种情况下,因为他们已经向你证明了他们不会为你做任何事情。所以,你知道,创伤性的元素是试图从不关心你的人那里寻求帮助,然后,你知道,无论如何都只是受苦。这种累积效应真的对我的精神产生了影响,我认为它也对大多数子宫内膜异位症患者的精神产生了影响,以我们仍然没有完全解决的方式。是的,子宫内膜异位症是一种身体疾病,但它也应该被视为一种精神健康危机。没有人应该承受那么多的痛苦。
Original English
Tracy Lindenman: Um but the like the the mental load of carrying that for years and years and years because the delay of diagnosis is allegedly 7 to 10 years but so many people are way outside that 7 to 10 year time frame. I don't know like I don't think I spoke to anybody who had a really easy time getting a diagnosis within just a couple years of onset of symptoms. Um and so yeah, like you you just suffer through it. Um thinking that, you know, this is just the way my life is going to be and then, you know, you get depressed from that. Like you get anxious about the pain that you know you're going to feel soon. Um anxious about the pain you're already feeling. Uh anxious about, you know, can I do all the things that I need to do or want to do with the the things that I've got going on? But of course, you know, most governments don't recognize endo is a disability, so you can't even get disability benefits. Um so you have to work, you have to go even when you're not feeling good. Um and so all of these things like they just pile up. It's a very cumulative effect. And then going to the doctor and all of this stuff has been happening to you every day of your life and then they see you for 10 minutes and you're rushed in and out. Um, and then they just listen to your symptoms and say, "Well, what do you want me to do?" It just feels like no one's really looking out for you, right? So, you do feel alone in that sense, too, because it's like, "Well, the people who said they were supposed to care for me don't care about me." And like if they don't care like I guess nobody cares, right? Um and so that feels very sad I think. And so like the but also like just all of my like crazy experiences with doctors including like that, you know, that conversation that the nurses had that I overheard like those things are just like they end up becoming reasons why you don't seek care, right? Like that you don't want to go to the doctor and expose yourself to this because you they've already proven to you that they won't do anything for you. Um and so you know the traumatic element is trying to trying to get help from people who don't care about you and then um and then just suffering anyway. Uh and that cumulative effect like really uh affected me mentally and it affects most people with endo I think mentally uh in ways that we are still not totally um reckoning with. Um and yeah like endo is a physical illness but it should also be seen as like you know a mental health crisis. No one is supposed to endure that much pain.
Nam Kiwanuka: 我们在本季早些时候采访过一个人,他说子宫内膜异位症表现得像癌症,因此它也应该像癌症一样获得资金和研究。但是,您说得对,研究证据平均需要17年才能被引入并整合到临床实践中。这只是一个平均值。如果癌症的治愈需要两年,而子宫内膜异位症的治愈需要32年,平均值仍然是17年。嗯,写这本书一定很有治疗作用,但了解到这样的事情让您有什么感受?
Original English
Nam Kiwanuka: We spoke to someone earlier in the season who said that endometriosis behaves like a cancer and therefore it should also receive the funding and the research like cancer does. But um you're right that it takes an average of 17 years for research evidence to be introduced and integrated into clinical uh practice. And that's just an average. If a cure for cancer took two years and a cure for endometriosis took 32 years, the average would still be 17. Um, writing the book must have been therapeutic, but learning something like this makes you feel what
Tracy Lindenman: 它让您觉得,嗯,女性被优先考虑了。什么?甚至不是说我们需要被优先考虑,而是我们至少能得到平等的护理和治疗吗?我们至少能得到平等的考虑吗?你知道,这个十分之一的数字,十分之一的女性患有子宫内膜异位症,我试图找到这个来源,但我哪里也找不到。我问了那些在子宫内膜异位症领域工作了几十年的人,我说这数据从何而来,没有人能说出来。但与此同时,每当我与女性谈论子宫内膜异位症时,我几乎遇到的每个女性都有一些故事。要么她们亲身经历过,要么是她们的密友、母亲、姐妹,或者,你知道,其他人。所以我认为它实际上可能比十分之一更常见。然而,你知道,它甚至没有被视为一个值得关注的问题。我想如果它如此普遍,那为什么还要解决它呢?我们被告知这只是人类经验,女性经验的一部分,对吧?但它也像,如果十分之一的女性患乳腺癌,或者八分之一的女性患乳腺癌,那么为乳腺癌研究投入的资金是惊人的。乳腺癌研究有那么多钱。如果子宫内膜异位症至少同样普遍,甚至可能更普遍,然而乳腺癌是可怕的。我不想任何人患乳腺癌。我不想患乳腺癌,但如果你发现得足够早,对一些人来说,康复率还是相当不错的。
Original English
Tracy Lindenman: It makes you feel like um that women are prioritized. What like and not like and not even that we need to be prioritized but like could we at least get like equal care and treatment could we at least get equal consideration um you know this one in 10 number one in 10 women have endometriosis I tried to find the source of that I couldn't find it anywhere I asked people who've been working in endo for decades I'm like where does this come from and no one could say but meanwhile whenever I just talk to women about endo Almost every woman that I've spoken to has some story. Either they personally experienced it or their close friends or their mothers or their sisters or their, you know, whoever. And so I think it's probably actually much more common than one in 10. Um, and yet, you know, it's not even treated as something to be concerned about. And I guess if it's so common, like why address it? We're kind of being told that it's just part of the human exper the female experience, right? But it's also like like if one in 10 women get breast or one in eight women get breast cancer, like the funding that is unrolled for breast cancer research is crazy. Like there's so much money for breast cancer research. And if endo is at least as common and probably even more common and yet like breast cancer like is awful. Like no one I don't want anyone to have breast. I don't want to have breast cancer, but like if you catch it early enough, like the recovery rates are pretty decent for most some people. Um, but
但那只是你生命中的一个时期,对吧?从癌症发病到缓解,那是你生命中的一个阶段。然后,你知道,你将来确实需要做筛查之类的。但子宫内膜异位症是一种持续的经历,从症状出现直到绝经,甚至有时在绝经后,因为很多人报告在绝经后仍有症状。所以它是一种终身疾病。然而它仍然没有获得任何资金来研究这些终身慢性疾病,而且这不应该是非此即彼的选择。它可能只是一个影响女性的问题,我们需要进行研究和资助,人们不应该被要求在没有得到所需护理的情况下忍受疼痛。您现在感觉如何?
Original English
That's just like a time in your life, right? Like from the onset of cancer to remission, like that's a period of your life. And then, you know, you do have to do screenings in the future and that kind of thing. But whereas endo is a sustained experience from the onset of symptoms until menopause essentially and then sometimes even after menopause because a lot of people have reported symptoms after menopause. And so it's like a lifelong condition. Um and that still doesn't get any funding for like these lifelong chronic things and and it shouldn't be an either or. It could just be this is something that impacts women and we need to do the research and the funding and people shouldn't be asked to live with pain um without getting the care that they need. Um how are you feeling?
Nam Kiwanuka: 您现在感觉如何?
Original English
Nam Kiwanuka: How do you feel now?
Tracy Lindenman: 这是一次情感丰富的采访。
Original English
Tracy Lindenman: This has been an emotional interview.
手术后的新生
Tracy Lindenman: 嗯,不,是的,我感觉,老实说,那次手术改变了我的生活。嗯,那次手术的经历并不好,尤其是两周后大出血,以至于我失去了40%的红细胞。我手术期间过得并不好。但手术五年后,我可以说我的生活是如此不同。好多了。我真的可以为未来做计划了,我可以以更长远的方式做事,因为我曾长期处于生存模式。很长一段时间,我只是在应对在这个世界上、在这个身体里生存的日常挣扎。现在我感觉,我真的可以做计划了,你知道,我回学校读书了,你知道,我读了硕士,现在正在读博士,你知道,我做了很大的改变,我搬到了另一个国家,你知道,手术后我真的能够做很多不同的事情。
Original English
Tracy Lindenman: Um no, yeah, I feel honestly getting that surgery changed my life. Um the uh it wasn't a great experience having the surgery, especially you know 2 weeks later hemorrhaging to the point where I lost like 40% of my red blood cells. I didn't have a great time having the surgery. Uh but postsurgery 5 years out I can say my life is so different. It's so much better. I can actually like make plans for the future like and I can do things in a more long-term way because I was stuck in survival mode. Right. For the longest time, I was just kind of navigating like the everyday struggle of being alive in this world and in this body. And now it's like and I can actually make plans and like you know I went back to school like you know I did a masters and now I'm doing a PhD like you know I made big change like I moved to a different country like I you know there's so many different things that I was actually able to do after I had the surgery.
Nam Kiwanuka: Tracy Lindenman,很高兴与您交谈,感谢您写这本书。我想这一定很难做到,因为即使只是阅读这些故事,并且经历过同样的手术,也很难将您作为记者所做的事情与作为个人所经历的事情分开。所以,非常感谢您将这一切公之于众,让人们知道这很重要。
Original English
Nam Kiwanuka: Tracy Lindenman, it's been a pleasure speaking to you and thank you for writing this book. I imagine it must have been hard to do because even just reading the stories and having had that same surgery, uh it's hard not to separate what it is that you're doing as a journalist from what happened to you as a person. So, thank you very much for making this like leaving it on public record that this this matters.
Tracy Lindenman: 是的,非常感谢。
Original English
Tracy Lindenman: Yeah, thank you so much.
Nam Kiwanuka: 这里是《Mistreated》。非常感谢您的收听。您可以在任何您下载播客的地方关注我们的节目,这样您就可以在每次新节目发布时收到通知。我们很乐意听到您的反馈。您可以给我发送电子邮件至 mistreatedodcast@tvo.org,或者您可以在社交媒体上联系我。这是我们从YouTube上收到的关于我们更年期治疗直播节目的一条评论:“出色的专家组,我喜欢这位出色的主持人。非常感谢。这些都是了不起的、聪明的女性,我感谢这里讨论的个人经历以及两位杰出医生的精彩见解。感谢您提供如此高质量的节目,关注如此重要的医疗问题。解决错误信息和虚假信息至关重要。万分感谢。”非常感谢您留下这条评论。我们很感激。本周的节目由Matthew Omera和我制作,由Colin Kish编辑。摄影师是Ricardo Diaz。数字短片由Ariana Longley制作,提词器由Alisa Verley操作。制作支持来自Jonathan Hallowell和TVO的数字媒体服务团队。Lori F是数字执行制片人。John Ferry是节目和内容副总裁。非常感谢您的收听。
Original English
Nam Kiwanuka: This was Mistreated. Thanks so much for listening. You can follow our show wherever you download your podcast so that you can get notified each time a new episode is available. We would love to hear your feedback. You can write me an email at mistreatedodcast@tvo.org or you can reach out to me on social media. Here's a comment we received on YouTube from our live episode on menopause treatment. Outstanding panel and I love the amazing host. Thanks so much. These are wonderful, brilliant women and I appreciate the personal experience discussed here and the fabulous input from two terrific physicians. Thank you for this highquality programming on such important medical concerns. Tackling miss and disinformation is critical. Huge gratitude. Thanks so much for leaving that comment. We appreciate it. This week's episode was produced by Matthew Omera and me and edited by Colin Kish. Camera work by Ricardo Diaz. Digital shorts by Ariana Longley and teleprompting by Alisa Verley. Production support from Jonathan Hallowell and TVO's digital media services team. Lori F is executive producer of digital. John Ferry is vice president programming and content. Thanks so much for listening.