认识子宫腺肌症:隐秘而普遍的妇科疾病
Namki Wunuka: 您正在收听的是《Mistreated》。我是 Namki Wunuka。子宫腺肌症(Adenomyosis)被称为你从未听说过的最常见妇科疾病。2018 年,演员加布里艾尔·尤尼恩(Gabrielle Union)帮助引起了人们对它的关注。
英文原文
**Namki Wunuka**: You're listening to mistreated. I'm Namki Wunuka. [music] Adenomyosis has been called the most common gynecological condition [music] you've never heard of. In 2018, actor Gabrielle Union helped to bring attention to it.[music]
英文原文
>> [music]在看了好几年世界顶尖的试管婴儿医生之后,我终于被正确确诊为子宫腺肌症。
英文原文
>> After seeing the the world's leading IVF doctors for a number of years, I was finally correctly diagnosed with adenomyosis.Namki Wunuka: 那年早些时候,尤尼恩分享说她在 40 多岁时被确诊患有子宫腺肌症,但她的症状在 20 岁出头时就已经开始了。几十年来,医生把她经期过长轻描淡写地说成是所谓的“年纪大了”,她还因为把事业放在生孩子之前而遭受羞辱。
子宫腺肌症被形容为子宫内膜异位症(Endometriosis)的表亲或邪恶双胞胎。虽然它们是两种截然不同的疾病,但它们有相似之处,也可以同时并存,这使得诊断病情变得更加困难。
2025 年的一项研究发现,42% 的子宫内膜异位症患者同时患有子宫腺肌症,37% 的子宫肌瘤患者也同时患有子宫腺肌症。而 2018 年的一项研究发现,患有子宫腺肌症的女性患子宫内膜癌和甲状腺癌的风险更高,而患有子宫内膜异位症的女性患子宫内膜癌和卵巢癌的风险更高。
在过去的几年里,子宫内膜异位症变得更加为人所知,但子宫腺肌症仍然充满误解,以至于这种疾病的患病率范围差异极大,从 5% 到 70% 不等,尽管更新的数据表明患病率大约在 20% 到 35% 之间。这是因为在过去,子宫切除术是确诊某人患有子宫腺肌症的唯一方法,但经阴道超声和磁共振成像(MRI)的进步提高了非侵入性诊断的准确性,让人们对更广泛的受累人群有了更多了解。另一个障碍是,有些患病女性没有任何症状。
在澳大利亚、英国和加拿大,一直有通过请愿呼吁将子宫内膜异位症和子宫腺肌症均认定为残疾。在历史上,子宫切除术曾被用来治愈子宫腺肌症,但切除子宫并不能治愈子宫内膜异位症。
为了进一步了解这种疾病,我们联系了马修·莱昂纳迪(Matthew Leonardi)医生,我们在第一季曾就子宫内膜异位症采访过他。他是国际公认的复杂妇科领域的带头人,也是世界顶尖专家之一。我们聊了什么是子宫腺肌症、为什么我们应该重新审视“子宫切除术”(hysterectomy)这个词,以及子宫内膜异位症研究所取得的进展。他现在加入了我们的节目。
马修·莱昂纳迪医生,非常高兴您能来到演播室。您好。
英文原文
**Namki Wunuka**: Earlier that year, Union shared that she was diagnosed with adenomyosis in her 40s, but that her symptoms had begun in her early 20s. For decades, doctors dismissed her long periods as quote old age, and she was shamed for prioritizing her career instead of having a baby. Adenomyosis has been described as a cousin or evil twin of endometriosis. While they are two distinct conditions, they have similarities and can also coexist at the same time, which makes diagnosing the condition that much harder. A 2025 study found that adenomyosis is found in 42% of individuals with endometriosis and 37% of those with uterine fibroids. And a 2018 study found women with adenomyosis are at a higher risk of endometrial and thyroid cancers, while women with endometriosis are at a higher risk of endometrial and ovarian cancers. In the last few years, endometriosis has become more known, but adenomyosis is still misunderstood so much so that the prevalence of the condition ranges widely from 5% to 70%, although more recent data suggest a prevalence of approximately 20% to 35%. That's because in the past, hysterectomy was the only way to diagnose someone with adenomyosis, but advances in transvaginal ultrasound and MRI have improved the accuracy of non-invasive diagnosis, providing greater insight into the broader population affected. Another barrier, some women who have it have no symptoms. There have been calls through petitions in Australia, the UK and Canada to recognize both endometriosis and adenomyosis as disabilities. Historically, hysterectomy was used to cure adenomyosis, but the removal of the uterus does not cure endometriosis. To understand this condition more, we reached out to Dr. Matthew Leonardi, who we spoke to in season one about endometriosis. He is an internationally recognized leader in complex gynecology and one of the top specialists in the world. We spoke about what adenomyosis is, [music] why we should reconsider the word hysterectomy, and about the advances made in endometriosis research. He joins [music] me now. Dr. Matthew Leonardi, it's so great to have you in studio. Hi.>>: 嗨,你好。
英文原文
**>>**: Hi, now.>>: 我太兴奋能当面和您聊聊了。您上一季就上过播客。非常感谢您第一次答应来,也感谢您第二次答应来。
英文原文
**>>**: I'm so excited to chat with you in person. You were on the podcast for a season. Thank you so much for saying yes the first time and thank you for saying yes the second time.>>: 我会一次又一次地答应来,[笑声] 因为任何讨论妇科健康以提升公众意识、让群体中的人们了解自己身体正在发生什么的机会,都是切实改善这一长期以来被忽视人群健康状况的绝佳机会,正如你所知道并且经常分享的那样。
英文原文
**>>**: I will say yes again [laughter] and again and again because any opportunity to discuss gynecologic health for awareness building, for people in the community to learn about what's happening in their bodies is an incredible opportunity to really enhance health for a population that has generally as you know you share all the time been ignored.发音与疾病关系:“丑表亲”与“丑陋的继姐妹”
>>: 是的,再次非常感谢你。第一次请你来节目,我们请你来聊的是子宫内膜异位症,而我一直听说的一件事,显然我自己也有的,就是——好吧,我都不知道该怎么读这个词,因为大家发音都不一样,是读 adenomyosis 还是 adenomyosis?
英文原文
**>>**: Yeah, thank you so much again. The first time we had you on the show, we had to have you on here to talk about endometriosis and something that I've been hearing a lot about and something that I had apparently is okay, I don't know how to say this cuz everybody pronounces it differently, adenomyosis or adenomyosis?>>: 我个人读作 adenomyosis,但我也意识到自己在某些医学术语上可能是“双语”的。其实你有时会听到我说 transvaginal,有时说 transvaginal。
英文原文
**>>**: I personally say adenomyosis, but I also kind of recognize that in some medical terms I might be bilingual. You'll actually hear me sometimes say transvaginal or transvaginal.>>: 好的。
英文原文
**>>**: Okay.>>: 所以重音不同,嗯,那个词怎么说来着?就是你在特定音节上加重语气的地方。语调(Intonation),对。在世界各地是不同的。所以欧洲、英国的一些人可能会读作 adenomyosis。在这里我说 adenomyosis。
英文原文
**>>**: So different in uh annotations. What's the word? Um, the where you emphasize a particular syllable. Intonation, yes. Uh, are different around the world. So, some people in in Europe, in the UK might say adenomyosis. Here I say adenomyosis.>>: Adenomyosis。我们就试着这么读吧。嗯,我听说子宫腺肌症被描述为子宫内膜异位症的姊妹病或邪恶双胞胎。为什么会这样?
英文原文
**>>**: Adenomyosis. We'll try saying it like that. Um, so I've heard adenomyosis described as a sister condition to endometriosis or its evil twin. Why is that?>>: 我说是“丑表亲”。
英文原文
**>>**: I say the ugly cousin.>>: 丑表亲。
英文原文
**>>**: The ugly cousin.>>: [笑声]
英文原文
**>>**: [laughter]>>: 事实上,我经常用灰姑娘的典故,子宫内膜异位症和子宫腺肌症就像那对丑陋的继姐妹。所以它们往往是相伴相生的。它们在两方面紧密相连:第一,它们实际上非常普遍地共同发生。患有子宫腺肌症的人患子宫内膜异位症的风险很高;患有子宫内膜异位症的人患子宫腺肌症的风险也很高。因此,当一个人出现符合这些特征的症状时,你真的应该同时考虑这两种疾病,而不是只考虑其中一种。
但它们高度关联的另一个原因是,它们的组织类型实际上非常相似。这两种疾病都是组织的异位生长。而且它们或多或少是同一种组织,是类子宫内膜组织。子宫内壁的组织会随着内膜的生长和脱落而变化,其目的是为了受精卵着床妊娠,然后随着月经排出体外。
所以它们是类子宫内膜病灶或组织的错误位置分布;在子宫腺肌症的情况下,是在子宫肌层内,局限在子宫肌壁内部;而子宫内膜异位症则完全在子宫外部,至少是在子宫表面或盆腔内结构的表面,但不在子宫肌壁内部。
英文原文
**>>**: In fact, uh, I often use the Cinderella reference, the ugly stepsisters of endometriosis and adenomyosis. So, they do often go hand in hand. They go hand in hand in two ways. One, that they actually occur very commonly together. Uh, so people with adenomyosis have a high risk of having endometriosis. People with endometriosis have a high risk of having adenomyosis. So, really when uh a person presents with symptoms that are kind of aligned, uh you really should be thinking about both conditions, not just one or the other. But the other reason they're highly connected is that they're actually very similar in the tissue type. So, both of these diseases are the incorrect placement of tissue. And it's more or less the same kind of tissue. It's endometrial like. The tissue of the inner aspect of the uterus that grows and sheds with the development of uh a lining for the purposes of implantation of a pregnancy, and then it is what comes out with menstruation. So, they're the uh incorrect placement of endometrial like lesions or tissue, uh in the case of adenomyosis, in the body of the uterus, contained within the body of the uterus, and endometriosis being really outside of the uterus, the very least on the uterus or on the surface of structures within the pelvic cavity, but not in the body of the uterus.>>: 如果子宫腺肌症被称为邪恶双胞胎,这是否意味着它比子宫内膜异位症更严重?
英文原文
**>>**: If adenomyosis is called its evil twin, does it mean that it's worse than endometriosis?>>: 倒不是说它比子宫内膜异位症更严重。当它与子宫内膜异位症同时发生时,绝对会让对那个特定个体的管理更加困难,因为你在两个不同的地方有两种疾病,而且子宫腺肌症与子宫内膜异位症不同,它存在于子宫内部,而许多人希望用子宫来怀孕。因此,它带来了一系列子宫内膜异位症所没有的挑战,但这绝不意味着子宫内膜异位症单独存在时就是简单或不丑陋的。只是当两者同时存在时,情况会更加复杂。
英文原文
**>>**: It's not that it's worse than endometriosis. When it is occurring with endometriosis, it absolutely makes the management of that particular individual more difficult because you have two diseases in two different places, and adenomyosis unlike endometriosis exists within the uterus, which many people want to use for the purposes of pregnancy. And so it introduces a whole series of a challenges that endometriosis doesn't have, but by no means is endometriosis simple or or not ugly uh when it's on its own. It just is more complicated when you have the duality of the two.临床症状与“只是经期不顺”的误区
>>: 嗯,如果得了子宫腺肌症,有什么迹象呢?
英文原文
**>>**: Um what are the signs of if you have adenomyosis?>>: 它们的症状实际上与子宫内膜异位症高度重叠。它们与子宫肌瘤也高度重叠。出血异常是标志性的问题,患者月经出血量增加,或者经期延长,出血时间超过 7 天、8 天、9 天、10 天。在那期间出血量也会增加。
此外,子宫腺肌症和子宫内膜异位症都会在某些人身上引起严重的痛经,但并不是所有人都有。这使得这两种疾病都更难诊断,因为世界上确实有人带着这些疾病到处走,却没有受到它们的困扰。我们目前还不知道原因。但是大多数患有子宫腺肌症的人在出血时确实会有程度更高的经期疼痛。
英文原文
**>>**: They're actually incredibly overlapping with endometriosis. They're also very overlapping with fibroids. So bleeding abnormalities are the hallmark uh problem whereby people have increased amount of menstrual bleeding or prolonged menstrual bleeds where they have more than seven days, eight, nine, 10 days of bleeding. The uh the amount is increased during that time as well. And then both adenomyosis and endometriosis cause severe period pain in in some people, not in everybody. That kind of makes both of these diseases more difficult to diagnose because there are actually people walking around the world with them that are not bothered by them. We don't yet know why. But most people with adenomyosis do have a higher amount of period pain when that bleeding is happening.>>: 很高兴你提到它的症状与肌瘤、子宫内膜异位症相似。有时它们会被轻描淡写地斥为只是经期不顺。当人们在应对这类疾病以及这些疾病如何影响他们的日常生活时,我们应该考虑些什么?
英文原文
**>>**: I'm glad that you said that has similar symptoms to fibroids, endometriosis. Sometimes they're dismissed as just being a bad period. What should we consider when people are dealing with these kind of conditions and how they impact their day-to-day lives?>>: 这种口头常说的“只是经期不顺”的说法实在是太普遍、太糟糕了。我们在诊所里几乎每天都能听到这种事:患者向他们的医生、护士倾诉自己的经历,却被告知这只是经期不顺,吃点艾德维尔(Advil)或泰诺(Tylenol),敷个热水袋,而没有进行恰当的排查流程来评估是否患有子宫腺肌症、子宫内膜异位症、肌瘤或其他问题。
当然,医疗系统存在许多障碍和局限性,我们确实必须结合实际情况来看待,但绝不应该有人被“这只是经期不顺”这句话轻易打发。如果你作为一名患者,困扰严重到要去看了医生或医疗人员并告诉他们你很难受,这就是一个警示信号,说明很可能出了什么问题。
但即使子宫正常,没有子宫腺肌症或肌瘤,我们仍然可以帮助人们改善针对那个问题的生命质量。我们并不总是需要肉眼可见的病理改变来证实某人的经历,或者治疗困扰他们的症状。
所以归根结底,我告诉人们,如果你经历的问题正在破坏你生活的任何一个方面,不管是去上学、去工作、和伴侣享受晚餐、进行性生活,还是参加社交活动,如果这种经历正在干扰你的生活,你就应该告诉别人。
英文原文
**>>**: This uh kind of colloquial line it's just a bad period is just so pervasive and so terrible. We hear this literally every day in the clinic that the patients have talked to their doctors, their nurses uh about their experience and they're told it's just a bad period, take some Advil or take some Tylenol, use a heat pack Without proper investigative process to evaluate for adenomyosis or endometriosis or fibroids or other things. And of course there are a lot of health system obstacles and limitations that we do have to kind of contextualize, but by no means should anybody ever be dismissed with the statement it's just a bad period. If you as a patient are bothered enough to visit a doctor or healthcare provider to tell them that you're bothered, that is a red flag that there is something likely wrong going on. But even if it is um a normal uterus without adenomyosis or fibroids, we can still help people improve their quality of life with that issue. We don't always need a pathology that's visual to validate somebody's experience or treat the symptoms that are bothersome to them. So bottom line is I tell people if the issue you're experiencing is disrupting any aspect of your life, whether that's going to school, going to work, enjoying a dinner with your partner, having sex, being able to attend a social event, if the experience is disrupting your life, you should tell somebody.>>: 这些问题也不是孤立运作的,因为我从长肌瘤中学到的一件事是,每次我被送进急诊室,我都觉得光是看着流出体外的血量,感到极度疲劳,头发大把大把地掉,我开始看起来像德古拉。
英文原文
**>>**: These things don't operate in isolation too because it one thing that I learned about having fibroids, every time that I ended up in the ER, I felt like just watching and seeing the amount of blood that was coming out of my body and just feeling really fatigued, my hair falling out, I started to look like Dracula.>>: [笑声] 我相信你当时肯定是那样。
英文原文
**>>**: [laughter] I'm sure you did.>>: 我的意思是,我现在能笑着说这件事了,毕竟过去一段时间了。但是所有这些事情,我当时没意识到它给我的心脏、给我的一切带来了多大的压力。它在很多方面对你的健康产生连锁反应。我们该如何把观念从简单的“这只是经期不顺”转变到关注它如何影响一个人的整个身心?
英文原文
**>>**: I mean I laugh about it now. I've had some space. But um but like all of these things the I I didn't realize like the pressure it was putting on my heart on on everything. It has a cascading impact on your health in a lot of ways. How do we change it from just like it's just a bad period to how it impacts somebody's full self?>>: 嗯,这就是我来这里的原因。
英文原文
**>>**: Well, that's why I'm here.>>: 是啊。
英文原文
**>>**: Yeah.>>: 我接受邀请,是因为我想帮助收听这个播客或在线观看的真实人群:如果你正在琢磨自己的出血量是不是太多了、疼痛是不是太剧烈了,只要你在这么想,那可能就已经是太多、太剧烈的一个迹象了。我们在妇科健康、生殖健康方面的教育存在巨大的不足,以至于人们甚至并不真正知道自己经历的是个问题。必须真正从那里开始。人们需要说出“我正在经历这种情况,这是一个问题”。他们首先需要知道这一点。如果他们不知道,那他们应该去找能够帮助他们的人。
而且那个人应该倾听。所以我们需要初级保健提供者、执业护士、家庭医生停止说“这只是经期不顺”,而是开始说“让我们来检查一下”。
英文原文
**>>**: I accepted the invitation because what I want to do is I want to help real people who are listening to this podcast or watching this online that if you're wondering whether my bleeding is too much, whether my pain is too much, if you're wondering that, that's probably already a sign that it's too much. And we have had such inadequacies in education around gynecologic health, reproductive health that people don't even really know that what they're experiencing is a problem. That's where it really has to start. People need to say I'm having this experience and this is a problem. They need to know that first. And if they don't, then they should go to somebody who can help them with that. And that person should listen. So we need the primary care providers, the nurse practitioners, the family doctors to stop saying it's just a bad period and start saying let's investigate that.流行率与历史诊断偏差
>>: 你之前提到,有些患有子宫腺肌症的人甚至不知道自己患有此病。那么它到底有多普遍?我们知道吗?
英文原文
**>>**: Something that you said earlier about how some people with adenomyosis don't even know that they have it. So how common is it? Do we know?>>: 真的,我们确实不知道。所以我会尽我所能回答这个问题。直到最近,也就是最近一二十年之前,子宫腺肌症只有在子宫被切除时才能被诊断出来。而且通常,实际上几乎无一例外,子宫只有在患者经历严重问题时才会被切除。通常是出血、剧烈疼痛或器官脱垂。所以当我们在文献中查看子宫腺肌症有多普遍时,我们实际上仅仅基于那些症状严重到不得不切除子宫的人群,病理医生切开标本检查后说这里面有子宫腺肌症组织。因此,基于这种类型的数据,我们的估计范围非常宽泛,从 9% 到 60% 不等。
但我们开始看到更多的文献发表,因为现在借助成像技术,尤其是超声,我们可以诊断子宫腺肌症。我们正在进行的一项研究印证了我的英国同事兼朋友乔尔·纳夫塔林(Joel Naftalin)最近的一项研究,该研究表明患病率可能在 25% 左右。他的研究显示,在因症状前往妇科诊所就诊的人群中,患病率约为 21%。因此可能患病率会稍微低一点,因为显然有很多人没有去妇科诊所,因为他们没有任何症状,或者他们有症状,只是不知道自己有。
英文原文
**>>**: Really, truly we don't know. And so I'll try and answer this question as best as I can possibly. Adenomyosis until very recently, until the last one or two decades, was only ever diagnosed at the time a uterus was removed. And often, actually almost exclusively, a uterus is removed when there is a significant problem that the patient is experiencing. So that's often bleeding or severe pain or prolapse. And so when we look at how common adenomyosis is in the literature, we're really basing it on only people who have had such severe symptoms that they have had to have the uterus removed, whereby the pathologist, the doctor who looks at the specimen, cuts it up and says there's adenomyosis in this tissue. And so our estimates are really um a wide from 9 to 60% based on that type of data. But we're starting to see more literature come out because now with imaging, in particular ultrasound, we can diagnose adenomyosis. And a study that we have in the works uh corroborates a recent study by a colleague and friend of mine from the United Kingdom, Joel Naftalin, uh that says we're probably in the realm of mid-20 %. So his study showed we're around 21 % prevalence in people who are visiting a gynecology clinic with symptoms. So maybe the prevalence is going to be a little bit lower because obviously there's many people who are not visiting that gynecology clinic because they don't have any symptoms, or maybe they do, they just don't know that they do.>>: 嗯。
英文原文
**>>**: Mhm.>>: 我们的研究显示,因各类症状前往我的超声妇科门诊就医的人群中,患病率约为 26%。实际上我们不只看那些有异常出血或经期疼痛的人,我们调查了每一个进门就诊的人,年龄大约从 18 岁到 65 岁左右。
英文原文
**>>**: So our study shows about 26 % is the prevalence in people who are visiting my ultrasound gynecology clinic with uh all types of symptoms. So we actually didn't just look at people who had abnormal bleeding or period pain. We looked at every single person walking through the door from the age of roughly 18 until um I think 65 or so.>>: 嗯。
英文原文
**>>**: Mhm.>>: 26% 是我们的数字。这意味着至少根据我们目前掌握的数据,每四个人中就有一人患有子宫腺肌症。我们都认识患有此病的人。事实上,这个房间里可能就有几位女性——我是说你刚才已经说了——这个大楼里可能还有好几个人患有子宫腺肌症,无论她们自己知不知道。这非常普遍。
英文原文
**>>**: And uh 26 % was our number. So that's one in four people who have adenomyosis, at least based on the data that we have access to now. We all know somebody with it. In fact, there's a few women in this room probably I mean you've already said there's probably a few more people in this building who have adenomyosis, whether they know it or not. It's very common.>>: 嗯。
英文原文
**>>**: Mhm.疼痛界限与去污名化:“切除子宫”与“歇斯底里切除术”
>>: 嗯,你提到了经期疼痛,而我直到最近才知道来月经时不应该那么痛。我以前以为来月经时拿着热水袋哪怕烫到皮肤发红也是正常的,既然来月经,那就是会痛的。
英文原文
**>>**: Well, you said period pain and it was only recently that I learned that you're not supposed to have that much pain when you have your period. I was thought that that's when you had a period and you had the water bottle and it was burning through your skin, that's fine. You have your period. It's painful.>>: 是的,我很遗憾教育系统、医生、护士以及家人让你从小相信了这一点。这不是真的。我的意思是,平心而论,月经疼痛通常不会是 0 分(满分 10 分)。大多数人都会有某种程度的不适或抽筋,因为子宫确实是一块肌肉,它需要排出内膜。当那块肌肉收缩时,会释放出炎症标志物,身体会感知为某种程度的危险、疼痛。
这很典型,有一定程度的疼痛是正常的,但不应该是致残性的。因此,如果一个人的经期疼痛可以在第一天吃一片或两片布洛芬就能搞定,可以继续过自己的生活而没有任何负面影响,那是可以接受的,那很正常。但如果你服用了那种抗炎药物仍然苦苦挣扎,或者如果你不得不服用阿片类药物,或者你必须用热水袋直到皮肤烫出烫伤印记——我们在有这种非常典型烫伤纹路的患者身上经常看到这种情况——这就告诉我们出了问题。
英文原文
**>>**: Yeah, I'm sorry that that's what you know the education system and through our our physicians and nurses and family members this is what you have grown to believe. It's not true. I mean truthfully a period is not really going to be zero out of 10. Most people are going to have some degree of uh discomfort or cramping because really the uterus is a muscle that needs to expel a lining. And when that muscle contracts, there are inflammation markers that are released that the body senses as some degree of of danger, of pain. Um that's typical. That's normal to have some degree, but it should not be disabling. So, if a person has a period pain that they can take a single ibuprofen or two ibuprofen on day one and they're off to the races. They can go about their life without any negative impact. That's okay. That's fine. But if you are taking that anti-inflammatory medication and you are still struggling or if you have to take, you know, opioids or you have to have that hot water bottle that's literally causing burn marks. We see this in patients who have this very classic burn pattern. This tells us>>: 有情况不对劲。
英文原文
**>>**: Something's going on.>>: 这是不正常的。这是不正常的。
英文原文
**>>**: This is not normal. This is not normal.>>: 我想回到你使用的特定语言上。你说了“切除子宫”(uterus removal),而没有使用“hysterectomy”这个词。这是为什么?
英文原文
**>>**: Uh I wanted to go back to uh particular language that you used. You said uterus removal. You did not use the word hysterectomy. How come?>>: 我在医学中非常努力地避免某些术语。Hysterectomy 这个词隐含着对“歇斯底里”(hysteria)的切除。很多人不知道这一点,但确实,我们历史上之所以叫子宫切除术这个名字,是因为过去医生认为他们是在把女性体内的歇斯底里切除掉。所以 hysterectomy 就是切除歇斯底里。这根本不是我们在做的事情。我们是在切除一个含有病变的器官。因此,“子宫切除”(uterus removal)第一不带有厌女色彩,第二它非常直观字面。
英文原文
**>>**: I try really uh uh hard to avoid certain terms in medicine. Uh hysterectomy is a term that implies the uh excision or removal of hysteria. And many people don't know this, but yeah, we have uh called the hysterectomy this because historically doctors believed they were cutting out hysteria from women. So, hysterectomy is the cutting out of hysteria. This is not what we're doing. We're cutting out an organ that contains a pathology. And so, a uterus removal is one not uh misogynistic and two, it's literal.>>: 嗯。
英文原文
**>>**: Mhm.>>: 人们能够听得懂。我真的想帮助人们听到对他们而言合乎逻辑的语言。我一直需要澄清的一件事——我相信听这个节目的每一位妇科医生也都会听到这个——Hysterectomy(我在这个语境下用一下),跟卵巢完全没有任何关系。它跟卵巢一点关系都没有。卵巢是一个完全独立的器官结构,在你做 hysterectomy、也就是切除子宫时,并不会切除卵巢。
但大多数人,当我说“我们计划做子宫切除术”,或者以前我更常用这个词时,他们会说:“可以,但我们能做部分切除吗?”我会说:“没有所谓的部分子宫切除术这种东西,但他们真正的意思是,能保留我的卵巢吗?”而那是我的默认做法。除非有人存在卵巢恶性病变的担忧,否则我们会保留卵巢。这些是非常宝贵的器官和结构。所以,通过从 hysterectomy 转变为使用“子宫切除”(uterus removal),我认为这对于没有受过医学教育的普通人来说要符合逻辑得多,他们明白子宫不同于卵巢。他们知道这一点。但当你使用 hysterectomy 这个词时,他们不知道,因为这被掩盖了,那是医学黑话。
英文原文
**>>**: People can understand it. I really want to help people hear language that makes sense to them. One of the things that I uh have to dispel all the time and I'm sure every gynecologist who will listen to this hears this as well. Hysterectomy, and I'll use it in this context, uh has nothing to do with the ovaries. It has nothing to do at all with the ovaries. The ovaries are a completely separate organ structure that are not removed when you have a hysterectomy, when you have your uterus removed. But most people, when I say let's plan for a hysterectomy or historically when I was using that language more commonly, they They say, yeah, but can we do a partial one? And I would say, well, there's no such thing as a partial hysterectomy, but what they really mean is, can we leave my ovaries? And that's my default. Unless somebody has a concern for a malignant lesion in the ovary, we're leaving the ovaries. These are very valuable organs and structures. So by transitioning from hysterectomy to uterus removal, I think that will be a lot more logical for a regular person who's not medically educated to understand the uterus is different than the ovaries. They know that. But when you use the term hysterectomy, they don't know that because it's hidden. It's medical lingo.保留卵巢的重要性与术后全面管理
>>: 我很喜欢做这个播客,因为我学到了太多东西。您刚才还提到了保留卵巢。
英文原文
**>>**: I love doing this podcast because I learned so much. You also said something about leaving the ovaries.>>: 嗯。
英文原文
**>>**: Mm.>>: 为什么这一点很重要?
英文原文
**>>**: Why is that important?>>: 卵巢是内分泌器官,意味着它们产生非常有价值的激素,这些激素的作用远不止关乎生育。显然,当某人切除子宫时,通常已经不再想生孩子了。尽管在某些情况下,人们必须切除子宫,但仍非常渴望或希望保留自己的生育能力。
但是,卵巢是内分泌器官,会产生大量性类固醇激素。当然,我们熟知雌激素,熟知孕激素。它们还产生雄激素,比如睾酮。这些对身体整体有着巨大的益处:对认知功能、心血管功能、骨骼健康、皮肤、头发、指甲都有益。这些是非常有价值的结构。因此,我们当然绝不想无缘无故地切除一个功能完全正常且对你没有危险的器官。
英文原文
**>>**: So the ovaries are an endocrine organ, meaning they produce very valuable hormones that are not just about having a baby. And obviously when somebody has their uterus removed, they are generally not interested in having a baby anymore. Although there are some instances where people have to have their uterus removed where they still very much want or wish for their own fertility. Um, but the ovaries are an endocrine organ. So they produce a lot of sex steroids. Of course, we know estrogen, we know progesterone. They produce androgens like testosterone. And those carry immense benefit to the body overall to your cognitive function, to your cardiovascular function, to your bone health, to your skin, to your hair, to your nails. These are very valuable structures. And so, of course, we would never want to cut out an organ that is a perfectly functional organ and not dangerous to you just because.>>: 嗯。
英文原文
**>>**: Mm.>>: 而且,回顾通过研究累积的数据,一些正在进行的工作告诉我们:如果一个个体过早切除卵巢,而没有接受恰当的激素替代疗法(我用激素替代疗法这个词,是因为在这种情况下它与更年期激素疗法略有不同,例如,我们有时会有切除卵巢的跨性别男性),当卵巢被切除时,激素治疗(无论是雌激素、孕激素还是睾酮)将是非常必要的,因为这些卵巢对一个人的整体健康和福祉具有重大益处。所以如果没有必要,我们不想切除它们。
英文原文
**>>**: Uh, and some of the work that's happening, looking back at data that's been accumulated through research studies tells us that if an individual has their ovaries prematurely removed without appropriate hormone replacement therapy, and I use that term hormone replacement therapy because it's a bit different in this case from menopause hormone therapy because for example, we sometimes have trans men who remove their ovaries. And so hormone therapy, whether that's estrogen, progesterone, testosterone, is really going to be necessary when ovaries are removed, because those ovaries carry significant benefit to a person's overall health and well-being. So we don't want to remove them if we don't need to.>>: 当你第一次来我们节目讨论子宫内膜异位症时,我问过你关于子宫内膜异位症的治愈方法,人们一直被引导相信子宫切除术是子宫内膜异位症的治愈方法,而你说并不是。那它是子宫腺肌症的治愈方法吗?
英文原文
**>>**: When you were on the first episode that we did with you on endometriosis, I asked you about cure for endometriosis and something that people have been led to believe was that the uterus removal was a cure for endometriosis, and you said it wasn't. Is that a cure for adenomyosis?>>: 是的,某种程度上可以说是的。我认为围绕子宫内膜异位症手术存在很多误解的原因之一是,许多接受子宫内膜异位症手术的人确实也切除了子宫。有时是因为他们患有肌瘤或子宫腺肌症,或者是因为即使子宫不含病变,它本身也是那些个体的疼痛来源。因此它经常被混为一谈,为了简单起见,世上许多人到处说:“是啊,我做了子宫内膜异位症手术,我做了子宫切除术。”其中的细微差别丢失了,因为医学对话本来就不是那么直截了当的,“切除子宫内膜异位病灶”对每个人来说并不那么容易记住。虽然现在我们在社交媒体上比以往任何时候都看到更多关于子宫内膜异位症、子宫腺肌症的内容,患者有时比他们的医生更懂。
英文原文
**>>**: Yeah, kind of, in some ways. So one of the reasons why I think that there's a lot of misunderstanding around endometriosis surgery is that many people who have endometriosis surgery do have their uterus removed. And that's sometimes because they have fibroids or adenomyosis or because the uterus, even if it doesn't contain a pathology, is a pain generator for those individuals. So it is often lumped together and for simplicity, a lot of people walk around the world and say, yeah, I had surgery for endometriosis, I had hysterectomy. The nuance is missing because of course medical dialogue is not so straightforward and excision of endometriosis is not so easy for everybody to remember, although now more than ever we're seeing of course so much content on endometriosis, adenomyosis on social media whereby people are sometimes smarter than their doctors,>>: 嗯。
英文原文
**>>**: Mhm.>>: 人们拥有对自己身体的自主权和控制权,这非常好。但是,切除子宫、子宫切除术或多或少会把子宫腺肌症组织从体内移除。[轻哼] 承认这一点非常重要,但我想非常明确地指出,当涉及到像子宫腺肌症或子宫内膜异位症这类致痛疾病时,即使含有病变的结构被切除了,那个存在多年的疾病的影响、慢性炎症,仍有许多挥之不去的东西是无法仅通过切除那个结构就能治愈或解决的。
因此,当我们谈论源自妇科的慢性炎症性疾病(如子宫腺肌症和子宫内膜异位症)时,我们可能会通过手术切除它们,包括针对子宫腺肌症切除子宫,但我们仍希望通过疼痛科学教育等机制来解决这些疾病带来的下游负面影响。这可以通过与疼痛心理学家合作,或者与注册营养师合作来调整胃肠道在卵巢激素周期的特定阶段或面对特定食物时的反应,因为胃肠道系统随着时间的推移,实际上对来自子宫腺肌症和子宫内膜异位症的炎症变得高度敏感。切除那些病变会带来一些积极影响,但并不具有根治性。
所以我们希望继续与相关的专职医疗人员合作。盆底物理治疗就是一个极大的方面。这是真正每一个女性以及天生具有女性盆底结构的个体都需要了解的事情,它对性健康、排尿健康、肠道健康、疼痛健康都至关重要。
英文原文
**>>**: which is great that people have that autonomy and control over their body. But the the removal of the uterus, hysterectomy, will more or less remove the adenomyosis tissue from the body. [snorts] And that's very important to acknowledge, but I want to be very clear that when it comes to pain generating diseases like adenomyosis or endometriosis, even when a structure that contains the pathology is removed, the effect of that disease that has been there for many years, the chronic inflammation, there are many things that are still lingering that are not going to be cured or fixed by simply the removal of that structure. So when we talk about chronic inflammatory diseases that are kind of gynecologic in origin like adenomyosis and endometriosis, we may do a surgery to remove them including the uterus for adenomyosis, but we still want to address the downstream negative impacts of those diseases through mechanisms like pain science education. That can be through work with a pain psychologist, working with a registered dietitian to adjust how the gastrointestinal tract behaves at certain points of the ovarian hormone cycle or with particular foods because the GI system actually becomes over time sensitized to the inflammation from adenomyosis and endometriosis. And removing those diseases can have some positive impact but not curative. So we want to continue working with our allied healthcare professionals. Pelvic floor physiotherapy is a huge one. This is something that literally every single woman and individual with a female-born pelvic floor needs to know, is essential to sexual health, urinary health, bowel health, pain health.>>: 安妮·海瑟薇(Anne Hathaway)刚刚才说过这个,她说天哪,这彻底改变了我的生活。
英文原文
**>>**: Anne Hathaway just said that and she was like, oh my god, this has completely changed my life.>>: 盆底健康。我一生中学到了很多东西,我年轻时根本没有这么多信息可用,随着我年龄增长并发现了这些,我的生活得到了改善。
英文原文
**>>**: Pelvic floor health. That's I've learned so much throughout my life um and there's so much information that was not available to me when I was a young woman and then as I've aged and discovered it, my life has improved.发病机制、风险因素与结合带
>>: 我读到过剖腹产可能导致子宫腺肌症。这是真的吗?或者到底是什么导致了子宫腺肌症?
英文原文
**>>**: I read that um C-sections can cause adenomyosis. Is that true? Or what causes adenomyosis?>>: 同样,我们从已发表的文献中所了解到的存在偏差。我们拥有历史诊断数据的对象,是那些已经切除子宫的人。如果我们从这里开始看,这些人中有很多人已经完成了生育。这就意味着从统计学上讲,她们中有相当高的几率接受过剖腹产,而剖腹产是一个已知的“风险因素”——我给它打上了引号——针对子宫腺肌症而言。
其他的风险因素还有年龄,这在许多切除子宫的人身上自然也是自带的,因为大多数人在 20 岁或 25 岁时不会做子宫切除,而在 40 岁或 45 岁时,确实是做手术的时候。所以年龄和产次(大致指分娩胎儿的次数)是另一个风险因素。
英文原文
**>>**: what we know from again the literature that's published is biased. The people who we have the historical diagnosis on are those that had their uterus removed. So if we start there, many of those people have finished building their family. So that means that statistically there's a quite high chance that many of them them undergone a cesarean section which is a known risk factor, and I put that in quotations for adenomyosis. The other risk factors are age, which of course is built in to many people who have undergone a uterus removal because most people at 20 or 25 are not doing that. When they are 40 or 45, sure, that's when it's happening. So age and parity, which means the number of deliveries of a babies more or less. That's another risk factor.>>: 比如通过剖腹产还是顺产?
英文原文
**>>**: Like via C C section or vaginal birth?>>: 实际上是指分娩孕周超过 20 周的胎儿、婴儿。所以这三个是主要的风险因素,我再次用了肢体动作打引号,因为它们可能实际上并不是导致疾病发生的风险因素,但它们可能是某种旁观变量,是研究中这些切除子宫的女性在生命历程中恰好经历过的事情。而子宫腺肌症很可能并不是从这些事件中的任何一个开始的。
我的意思是,剖腹产确实破坏了结合带(junctional zone),而结合带被认为是子宫腺肌症的发源地,我们可以再多聊一点。
英文原文
**>>**: really is the delivery of a of a fetus, of a baby over 20 weeks gestational age. So those are the three main risk factors, and again, I'm using the air quotations because they're probably actually not risk factors for the disease initiation, but they may be um kind of bystanders, things that these women who are in the studies, who had the uterus removed, simply had through their life course. And the adenomyosis probably didn't start with any of those events. I mean, C section is one thing that it truly does interrupt the junctional zone, which is thought to be the origin spot of adenomyosis, and we can talk a little bit more about that.>>: 那是什么意思?
英文原文
**>>**: that mean?>>: 结合带是子宫内膜(再次说明,这是月经的来源和胚胎着床的地方)与子宫肌层(子宫主要平滑肌肌体)之间的解剖间隙。结合带是这两个区域之间的连接处。它被认为是一个非常独特的解剖区域,与子宫腺肌症的发生高度相关。绝大多数病例中的子宫腺肌症就是从这里开始的。
但在剖腹产中它确实会被破坏,因为在剖腹产中,医生必须切开子宫的外层以及子宫的所有各层,包括结合带,一直切到子宫内膜腔,也就是胎儿所在的地方。所以它被破坏了。在人们生命历程的其他时间点它也会被破坏。例如宫内操作、刮宫术被认为是一个风险因素,因为在某些情况下结合带确实存在理论上非常真实的破坏。
但现实情况是,就像子宫内膜异位症一样,子宫腺肌症可能存在遗传易感性。人们可能对其易感。它很可能像我们在妇科中讨论的许多此类疾病(肌瘤、内异症)一样,始于年轻成年期,甚至更早在青春期。因此风险因素可能更多是遗传或对其易感性。而像分娩、剖腹产、刮宫或衰老等事件,都是可能使它变得更加明显,或者可能导致最终通过切除子宫从而得以做出确诊的程序。
英文原文
**>>**: Junctional zone is the um anatomical space between the endometrium, which again is where menstruation comes from, and a pregnancy implants, and the myometrium, which is the main body of muscle of the uterus. The junctional zone is the junction between those two areas. It's thought to be a unique anatomical space that's very relevant for the initiation of adenomyosis. It's where adenomyosis in the majority of cases begins, but it is something that is interrupted in a cesarean section, because in a cesarean section, one has to cut the outer aspect of the uterus and all layers of the uterus, including the junctional zone, into the endometrial cavity, which is where the baby lives. So that's interrupted. It's also interrupted at other points in people's life course. So intrauterine procedures, uh curettage as an example is one procedure that's thought to be a risk factor because there is a very real, hypothetical some instances interruption of that junctional zone. But the reality is is there's probably a genetic predisposition to adenomyosis just like there is to endometriosis. And people probably are susceptible to it. It probably begins like a lot of these diseases that we talk about in gynecology, fibroids, endo in young adulthood, maybe even earlier in adolescence. And so that risk factor is probably more genetics or susceptibility to it. And those events like parity or cesarean section or curettage or aging are all sort of events that might make it more obvious or might lead to an eventual procedure that allows that diagnosis to be made because that uterus is removed.>>: 嗯,我在网上看到说子宫腺肌症是 40 多岁女性的疾病。20 多岁或 30 多岁的人有可能得子宫腺肌症吗?
英文原文
**>>**: Um so I read online that adenomyosis is a disease of ladies in their 40s. Is it possible for somebody in their 20s and 30s to have adenomyosis?>>: 完全有可能。认为这是 40 多岁有子宫的女性或人群专有疾病的说法完全是一个谬论。我们是基于现有文献得出了这些说法或论断,而如前所述,直到现在、直到成像技术让我们能够诊断它之前,唯一能得到子宫腺肌症诊断的人都是那些切除了子宫的人。诊断是在治疗或手术之后才做出的。因此,我们对这种疾病所相信的一切,其实都即将被颠覆。
英文原文
**>>**: Absolutely. It is a falsehood that this is a disease of a woman or person in their 40s with a uterus. We are establishing these these sayings or these quotes based on the literature that exists which again up until now, up until imaging has allowed us to diagnose it, the only people who ever got a diagnosis of adenomyosis were those that had their uterus removed. The diagnosis was made after the treatment or after the procedure. And so everything we believe about this disease is really about to change.残疾界定与诊断技术突破
>>: 我想给你看一个 Instagram 上的视频片段,看完后想听听你的想法。
英文原文
**>>**: I'd like to show you something a clip from Instagram and I would like to get your thoughts about it afterwards.>>: 到 2026 年,即使拥有所有的医学和技术进步,子宫内膜异位症、子宫腺肌症以及世界上前 20 种最痛苦疾病中的任何一种,都尚未被诊断认定为残疾。这简直就是致残性的。
英文原文
**>>**: In 2026 even with all the medical and technological advancements endometriosis, adenomyosis and any of the top 20 most painful conditions in the world have not yet been diagnosed as a disability. It is quite literally dis- abling. [music]>>: 作为治疗子宫内膜异位症和子宫腺肌症患者的医生,它们应该被归类为残疾吗?
英文原文
**>>**: As somebody who treats patients with endometriosis and adenomyosis, should they be classified as disabilities?>>: 这是一个非常有争议的问题。我知道可能有些人不一定会同意我在这里的回答。我认为疾病本身并不构成残疾。但是人们伴随这种或这些疾病生存的状态,可以构成残疾。
作为一名妇科医生,作为一名帮助患有子宫内膜异位症和子宫腺肌症患者的专科医生,我的目标是让他们恢复功能。让他们达到他们应得的生命质量。我经常对我的患者说:我希望你在学校、在职场、在性生活、在社交生活、在你真正想脱颖而出的任何领域都表现出色,我想让你达到那个状态。而且我相信,通过强有力的诊断方法和强有力的治疗方法,我们可以让人们达到那个状态。当我们做不到的时候,那么考虑认定为残疾是可能的。
英文原文
**>>**: This is a very controversial question. And I know that maybe some people will not necessarily agree with my answer here. I think that the disease itself does not constitute a disability. But how people exist with their disease or diseases can constitute a disability. The goal for me as a gynecologist, as a specialist who helps people with endometriosis and adenomyosis is to make them function. To allow them to reach that quality of life that they deserve. And I will often say to my patients, I want you to excel in school, in your workplace, in your sex life, in your social life, in whatever domain you really want to excel in, I want to get you to that point. And I believe that with a strong diagnostic approach and a strong treatment approach, we can get people to that point. And when we can't, then it is possible that disability could be considered.>>: 自从你在 2025 年第一次上这个播客以来,似乎有更多人在谈论子宫内膜异位症,关于它的一部纪录片甚至获得了英国电影学院奖(BAFTA)。最近在子宫内膜异位症护理方面取得的进展有哪些?
英文原文
**>>**: So since you were first on the podcast in 2025, a lot more people seem to be talking about endometriosis, a documentary on it, even won a BAFTA. What are some of the advancements that have been recently made in endometriosis care?>>: 在子宫内膜异位症护理方面,我们看到的其中一件事当然是早期诊断。我想明确指出,这也适用于子宫腺肌症。随着诊断性超声的进步,我们可以在这些疾病的最早阶段看到它们。所以我们正在 14 岁、15 岁和 16 岁的人群中诊断出子宫内膜异位症。子宫腺肌症可能会在这个阶段开始。依我看来,它可能开始得稍晚一点。我们正在 22 岁、23 岁、24 岁的人群中诊断出子宫腺肌症,这是以前从未做到过的,凭借切实的视觉线索。
因此,首先,我们正处于历史上的一个时刻:我们能够在其最早阶段以视觉方式了解这些疾病,而不是等到某人已经做了子宫切除术,也不是等到某人到了子宫内膜异位症第四期并接受了手术。我们从一开始就看到了它们。所以这是我们现在正在学习的基础科学,但它也带来了早期治疗人们的机会,让他们了解自己的身体、功能与功能障碍,并找到优化的机制。因此,超声成像对子宫内膜异位症和子宫腺肌症的诊断,在当前绝对是最大的革命。
我们正开始考虑使用基于成像的诊断来纳入随机对照试验。在历史上,对于子宫内膜异位症,一个人必须做手术看到病灶,然后才能进入随机对照试验。但手术本身就打断了子宫内膜异位症的自然发展进程。因此在某种程度上,这本身就已经是试图治疗该疾病的一种尝试,但随后患者又会被纳入药物试验。这与在某人 22 岁、疾病处于自然存在状态时将其纳入试验、观察该患者使用该药物的效果是完全不同的。因此,我们有机会开展一整套全新的研究,以寻找新的选择、新药物、新治疗方案——并不总是药物。
也可以是,你看,我们刚刚完成了一项针对伴有胃肠道症状的子宫内膜异位症患者的地中海饮食的随机对照试验。这是一种非常整体全面的饮食,通常绝不会是单独的治疗手段,但很多人想找到新颖的整体健康方案。所以我们现在有能力做到这一点,鉴于我们目前还无法确定确切的起因并防止它们的发生,这将彻底革新我们治疗子宫内膜异位症和子宫腺肌症患者的能力。
英文原文
**>>**: In endometriosis care, one of the things that we have seen, of course, is the early diagnosis. And I want to be clear that this is also applicable to adenomyosis. With advancements in diagnostic ultrasound, we can see these diseases at their earliest stages. So we are diagnosing endometriosis in 14-year-olds, in 15-year-olds, and 16-year-olds. Adenomyosis may start at this point. My opinion, it probably starts a little bit later. We're diagnosing 22-year-olds, 23-year-olds, 24-year-olds with adenomyosis, which has never been done, with tangible visual cues. So, first of all, we are at the moment in history where we can understand these diseases in a visual way at their earliest level, not when somebody has already had a hysterectomy, not when somebody has reached stage four endometriosis and undergoes a surgery. We are seeing them from the beginning. So this is fundamental science that we're learning about now, but it's also introducing early opportunity to treat people, to allow them to learn about their body, the function and dysfunction, and find that mechanism to optimize. So the imaging, the diagnosis of endometriosis and adenomyosis is for sure the biggest revolution at this point in time. We are starting to consider using a diagnosis at imaging for entry into randomized controlled trials. So historically, for endometriosis, a person had to have surgery to see the disease, to then be entered into a randomized control trial. But the surgery just interrupted the natural course of that endometriosis. So in a in a way, it was an attempt already to treat the disease, but then a patient would be enrolled in a drug trial, for example. That's not the same as enrolling somebody at 22 with the disease at its kind of natural existence to see how does that person do with this medication. So we have the opportunity to run a whole new slew of research studies that can identify new options, new medications, new treatments, not always medications. It could be, you know, we've just finished a randomized control trial on the Mediterranean diet for patients with gastrointestinal symptoms associated to endometriosis. And that's a really holistic diet, never usually a standalone treatment, but a lot of people want to find novel holistic options. So we have the ability to do this now, and that's going to revolutionize our ability to treat patients who have endometriosis and adenomyosis since we can't yet identify the exact why and prevent them from beginning.生物标志物前沿与疾病进展假说
>>: 我在什么地方读到有研究——我不知道这是不是 Instagram 上的谣言之类的——现在经血被用来诊断子宫内膜异位症。这是真的吗?
英文原文
**>>**: I read somewhere that their studies or I don't know if this is like a Instagram lie or whatever, that uh period blood is now being used to diagnose endometriosis. Is that true?>>: 从“这是一项任何人都已经在实际使用的现有检测”这个角度来说,这不是真的。但在这个疾病领域正在发生的事情是,我们正在寻找所谓的生物标志物(biomarkers)。我们可以利用来自人体的标本(生物标本)来寻找那些能发出子宫内膜异位症或子宫腺肌症信号的标志物。我目前正在全国范围内开展一项研究,通过血液检测寻找 microRNA(这只是血液中来自 DNA 的一种分子),它可能提示子宫内膜异位症。
我们还有关于唾液、经血、子宫内膜活检组织、尿液的生物标志物研究。因此,不同的体液都可能蕴含秘密,我们可以用它们开发新的检测方法,让人们了解自己是否患有这些疾病。目前在加拿大,还没有人在官方医疗环境中使用其中任何一种,但许多研究正在开展,前景十分乐观。
英文原文
**>>**: It's not true in the sense that it's an available test that anybody is actually using, but what is happening in the world of these diseases is we're looking for what we call biomarkers. And we can use specimens from the body, biospecimens, to look for markers within those specimens that signal endometriosis or adenomyosis. So I'm running a study across the country right now looking at blood to look for microRNAs, which is just a a molecule within the bloodstream from DNA that could signal endometriosis. We have biomarker studies on saliva, on menstrual blood, on um endometrial biopsies, uh urine. So different bodily fluids can potentially hold secrets that we can use new tests for to give people a sense of whether they have these diseases or not. Nobody is yet using any of these in Canada in an official context, but many of them are being studied and there's a lot of optimism.>>: 子宫腺肌症和子宫内膜异位症都是进行性发展的疾病。能解释一下这是怎么运作的吗?
英文原文
**>>**: Adenomyosis and endometriosis are both progressive diseases. Can you explain how that works?>>: 这又是一个争议点。嗯,它们都是进行性的,但我认为它们是以不同的方式进行性发展的。有一种观点认为,子宫内膜异位症可能恶化得非常快,然后就维持在那个状态,几乎没有太大变化。根据我们掌握的一些研究,它可能在人们大约 25 岁之前就已经变得很严重了。
英文原文
**>>**: So controversy. Um they're both progressive, but they're I think progressive in different ways. So there is a little bit of a thought that endometriosis probably becomes very bad very fast and then stays that way with very little change. And it probably becomes bad before people hit the age of roughly 25 based on some studies that we have.>>: 真的吗?
英文原文
**>>**: Really?>>: 是的。
英文原文
**>>**: Yeah.>>: 因为我读到过有人在五六十岁才被确诊。
英文原文
**>>**: Because I'm reading people getting diagnosed in their 50s and 60s.>>: 是的,但她们可能从 20 多岁起就患有此病了。当然,在医学中,我尽最大可能永远不用“决不”和“总是”这两个词,因为总会有例外。但根据我们现有的证据,并且基于过去六年来我在高度沉浸式的临床实践中亲眼所见,我确实认为这种疾病发生在人们的青年期、青春期、青年早期,而且它的严重程度很可能会进入平台期——这里指的是子宫内膜异位症。
另一方面,子宫腺肌症可能确实表现出更长期的进展,随着年龄增长而越来越严重。但这在很大程度上仍然是一种假说,而非被证实的事实。
我们确实抱有一些希望,即这些受激素刺激的疾病在进展方面可能会在某种程度上被遏制,尽管这也有相对较大的争议。很多人——也许听节目的某些人会说:“你知道吗,我一直在吃避孕药,一直在接受激素治疗,后来我做了手术,却发现了四期子宫内膜异位症。因此药物并没有阻止疾病进展。”
但实际上,我们并不真正知道你在开始用药之前病情是怎样的。因为在那个时候,比如 10 年前的加拿大,根本没有诊断性成像技术来给人们确定分期。但现在随着超声技术的进步,我可以告诉人们——顺便说一句,我并不喜欢分期系统——我可以告诉患者她们患有轻度浅表型子宫内膜异位症(这里的“轻度”是指外观上的形态,而不是指患者感受到的症状轻重),或者她们有肠道子宫内膜异位病灶(也就是大多数人所知道的四期内异症)。我可以在患者 18 岁、24 岁、44 岁时明确告诉她们。
因此我认为存在一种普遍的观念,而且我认为它很可能是错误的,即人们认为在接受这些治疗的同时疾病还在急剧恶化。我认为人们在开始治疗之前可能就已经患有严重的病变了。他们只是不知道,因为当时医疗上的诊断手段比较落后。
英文原文
**>>**: Yes, but they've probably had it since they were in their 20s. Of course, in medicine, I try as best as possible to never use the words never and always because there is always an exception. But based on the available evidence that we have and based on truly what I have seen over the past six years being in a very immersive clinical practice, uh I do actually believe that this disease happens in people's young adulthood, adolescence, young adulthood, and it probably plateaus in its severity, endometriosis that is. Adenomyosis on the other hand probably does progress more long term and becomes worse more and more and more as people age. But this is still very much hypothesis versus proven fact. Uh we do have some hope that these diseases which are hormonally stimulated diseases could be in some ways halted in terms of the progression, although that's also relatively controversial. And a lot of people, maybe some of the people listening here will say, you know, I was on a birth control pill, I was on a hormonal treatment, and then eventually I had surgery and I had stage four endometriosis. So therefore the medication did not prevent the progression. But actually we don't really know what you had before you started that medication because at that point in time, you know, 10 years ago in Canada at least, there was no diagnostic imaging to give people the stage. But now with our advancements in ultrasound, I can tell people that and and for what it's worth, I don't love the stages. So I can tell people that they have mild superficial endometriosis, mild in terms of how it looks, not in terms of how it feels, or they have a bowel endometriosis lesion, which would be what most people know as stage four endo. And I can tell people that at 18, 24, 44. And so I think there's this uh common belief, and I do think it's probably incorrect, that the diseases continued to get significantly worse whilst on these treatments. I think people probably already had bad disease before the treatment was started. They just didn't know because the diagnosis at that time was mediocre.分期系统的缺陷与疾病亚型分类
>>: 快速追问一下,你为什么不喜欢分期系统?
英文原文
**>>**: Quick follow up, why don't you like the stages?>>: 子宫内膜异位症的分期系统是基于美国生殖医学学会 1990 年代的一份出版物。事实上,该分期系统根本没有纳入肠道、膀胱深部浸润型子宫内膜异位症,而这是人们非常常见的一种子宫内膜异位症形式,肠道比膀胱更常见。因此,它缺失了一整类非常关键的子宫内膜异位症,因为它是建立在一个聚焦于生育能力的学会背景下的。
它与一个人患病时的感受完全没有关联。这也是为什么我用词非常谨慎,轻度病变、浅表型子宫内膜异位症并不意味着症状轻微,但人们会这样理解。因此她们会说:“我是一期内异症,可我疼得要命。”于是她们反而不相信自己是一期内异症,她们认为自己一定是四期,因为在她们心中,她们的疼痛程度等同于四期。
英文原文
**>>**: So, the stage system of endometriosis uh is based on the American Society of Reproductive Medicine uh publication from the 1990s. In fact, there's no integration of deep endometriosis in the bowel, the bladder in that staging system at all, which is a very common form of endometriosis for people to have, more of the bowel than the bladder. So, it's missing a whole category of very relevant endometriosis, but it was built in a society that was focused on fertility. It doesn't correlate at all to how a person feels with the disease. And that's why I said the line very carefully, mild disease, superficial endometriosis does not mean the symptoms are mild, but people interpret it as such. So, they say, well, my stage one endo, I have terrible pain. So, they actually then don't believe that they have stage one endo. They think they must have stage four endo because in their mind their pain level equates to stage four.>>: 嗯。
英文原文
**>>**: Mhm.>>: 所以在涉及到疼痛时,那个分期系统毫无相关性。该分期系统对于生育力的预后、一个人受孕的可能性确实有一些用处。所以它有一点点用处,但我真的更倾向于根据我们所说的亚型来帮助人们理解:浅表型子宫内膜异位症、深部浸润型子宫内膜异位症和卵巢型子宫内膜异位症。
英文原文
**>>**: So, if there's no correlation in that staging system when it comes to pain. The staging system does have some utility for prognosis of fertility, how somebody might be able to conceive. So, there is a little bit of utility in it, but I really prefer to help people understand based on what we call the subtypes, superficial endometriosis, deep endometriosis, and ovarian endometriosis.历史认知断层与为女性健康发声
>>: 你认为关于子宫腺肌症和子宫内膜异位症等疾病,最被误解或最不为人所知的是什么?
英文原文
**>>**: What do you think is the most misunderstood or unknown thing about conditions like adenomyosis and endometriosis?>>: 作为一名研究人员,我认为我们对这些疾病几乎一无所知,在理解它们方面我们确实处于起步阶段。子宫腺肌症直到 1970 年代才真正被首次命名。在 1800 年代有一位研究人员罗基坦斯基(Rokitansky)首先在病理标本上发现了它,但人们真正看到“adenomyosis”这个词是在 70 年代初。那——
英文原文
**>>**: As a researcher, I think that we know nothing about these diseases and we are really truly at the infancy of understanding them. Adenomyosis was really only first coined in the 1970s. There was a researcher, Rokitansky, in the 1800s who first identified it on a pathology specimen, but the first time that you see the words really truly adenomyosis were in the early '70s. That's>>: 太令人震惊了。
英文原文
**>>**: That's so shocking.>>: 对一些听节目的观众来说,这发生在他们的有生之年。我的意思是,对我来说,时间也不算太遥远。所以我们才刚刚开始理解这些疾病。
我认为,一方面,科学知识的匮乏导致了我们医疗服务提供的诸多不足;但另一方面,这也是整个社会看待女性的方式所致。在这个例子中,我非常具体地使用“女性”这个词,因为女性一直被忽视。我们前面已经讨论过歇斯底里了。女性一直没有机会倾诉她们受到自身症状的困扰。医生一次又一次地告诉她们:“没事,你看,一切都很正常,你很好,喝杯红酒就行,怀个孕就好了,这只是经期不顺,减个 5 磅就好了。”是的,一点没错。
因此我认为,在历史上我们第一次拥有了——至少在北美语境下——一个让女性的声音被倾听、被相信的机会,开始以严谨的方式研究这些疾病,通过非侵入性方式确诊女性并将她们纳入合理的研究中,招募她们参与极具严谨性和强方法论的研究来评估结局。这是历史上第一次能够做到这一点。
所以,虽然有很多现状糟糕的理由,但我想把焦点转向保持希望与携手合作。我经常对我的患者说:让我们一起成为战士。发出你的声音,不要保持沉默。告诉你的朋友、你的家人和你的同事,向你的议员发声。我一直告诉人们给他们的国会议员(MP)和省议员(MPP)发邮件。我告诉人们给他们就诊的医院机构发邮件,去强调医疗服务质量有多差,或者医疗服务质量有多好。实际上,这就是我们在我们机构努力做的事情,因为我们在汉密尔顿健康科学中心(Hamilton Health Sciences)对自己提供的医疗服务感到非常自豪。
我告诉人们,继续给机构写信。机构里的人在倾听。抱歉有这么密集的邮件轰炸,但你们需要听到这些。人们需要说出自己何时获得了高质量的医疗服务,这样能够与政府对话的医院系统才能为那些特定的健康问题争取资金。
英文原文
**>>**: some people who are listening to this, it's in their lifetime. I mean, for me, it's not that far off. So, we are just at the very beginning of understanding these these diseases. And I think, you know, partly lack of scientific knowledge has led to a lot of inadequacies in in our healthcare delivery, but it's also how society has looked at women. And I'll use women very specifically in this instance because women have been ignored. We talked about hysteria already. Women have not had a chance to say that they're bothered by their symptoms. They've been told by doctors many times over and over, it's fine, you know, everything is normal, you're okay, just have a glass of wine, just get pregnant. It's just a bad period. Just lose 5 lb. Yeah, exactly. And so we are, I think, at the first moment in history where we have, at least again in a North American context, an opportunity for women to be heard, to be believed, to start studying these diseases in a rigorous fashion, to include uh women in in research studies that make sense by diagnosing them in a non-invasive way and then recruiting them in a really rigorous, strong methodology study to assess the outcomes. This is the first moment in history that this is possible. So, there's a lot of reasons why it's bad, but I want to shift that focus to let's be hopeful and let's work together. I tell this to my patients all the time, let's be warriors together. Use your voice. Don't don't be quiet. You know, tell your friends and your family and your colleagues, speak to your Minister of Parliament. I tell people all the time to email their MPs and their MPPs. I tell people to email the hospital corporations that they're getting their care at to emphasize either how poor the quality of care is or how good the quality of care is. And actually, that's what we try and do in our institution because we're very proud at Hamilton Health Sciences of the care we deliver. And I tell people, keep writing to the corporation. And the corporation people are listening. Sorry for the bombardment of emails, but you need to hear this. People need to say when they're receiving high-quality care so that the hospital systems, who talk to the government, can advocate for funding for those particular health issues.妇科体制反思与节目结语
>>: 这是专门针对女性的两个学科之一。
英文原文
**>>**: It's one of two disciplines that's dedicated to women.>>: 你知道吗,妇科是唯一一个在单一器官系统内没有内科和外科分工的专科?我来解释一下。呼吸科管肺部:呼吸内科是内科服务,还有一个完全独立的外科服务叫胸外科。对于肾脏,我们有肾内科(内科服务),我们有泌尿外科(外科服务)。对于胃肠道系统,我们有普外科或结直肠外科,还有很多针对肝脏等器官的其他外科服务;然后有消化内科,这是内科服务。
妇科是唯一一个我们什么都要做的专科。就我而言,我是一名纯妇科医生。我已经不再做产科医生了,但加拿大绝大多数妇科医生同时也是产科医生。而产科是一门重症度非常高的医学专科,人们凌晨 4 点就得醒来做紧急剖腹产,以挽救胎儿和母亲的生命。它是唯一一个拥有其实可能重症度更高的姊妹或同源专科的专业。而且它是唯一一个没有内科与外科两分法的专业。
所以我们作为妇产科医生——以前戴着原先帽子的我和现在作为妇科医生的我——我必须在妇科中帮助人们解决激素问题,必须帮助人们解决试图怀孕的手术问题。所有事情都压在一个人身上,负担太重了。因此,我们被要求承担太多,而实际上我们应该开始将这些工作分散给更多的人,这样绝大多数需要这种帮助的人才能获得医疗服务。
英文原文
**>>**: Do you know that gynecology is the only specialty of an organ system that doesn't have a dichotomy, a split between a medical and a surgical service? So I'll explain. Respirology, the lungs. Respirology is the medical service. There is a completely separate surgical service called thoracic surgery. For the kidneys, we have nephrology, which is the medical service, and we have urology, which is the surgical service. For the GI system, we have either general surgery or colorectal surgery, and then there's a lot of other sort of surgical services that help with the liver and stuff. And then there's gastroenterology, which is the medical service. Gynecology is the only one that we do everything. And myself, I'm a pure gynecologist. I have retired my hat as an obstetrician, but the vast majority of doctors in Canada who are gynecologists are also obstetricians. And obstetrics is a very high acuity medical specialty where people are awake at 4:00 a.m. doing an emergency C-section to save the life of a baby and a mother. It's the only specialty that's got a a sister or sibling specialty that's actually quite possibly higher acuity. And it's the only specialty that doesn't have a dichotomy of medical and surgical. So we as OBGYNs, me and my original hat and now me as a gynecologist, I have to help people with hormone issues in gynecology. I have to help people with surgical issues trying to conceive a pregnancy. It's a lot all in one. And so, you know, we're asked to do a lot when actually we should be starting to spread that work across more people so that way the vast majority of people who need this help have access.>>: 是的。我们非常感谢你抽时间来参加播客。我们也真的很感谢你所做的一切,推动这一对话向前发展,拯救女性的生命,因为你正在做的就是这件事。非常感谢你,莱昂纳迪医生,感谢你的时间。
这里是《Mistreated》。感谢收听。[音乐]
您可以在任何下载播客的平台上关注我们的节目,以便在每期新节目上线时收到通知。我们非常想听到您的反馈。您可以给我发邮件,地址是 mistreatedpodcast@tvo.org。我会阅读所有邮件,或者您也可以在社交媒体上与我联系。
这里有一条来自我们第一季上一集《为什么女性占慢性疼痛病例的 70%》的评论:“需要有更多人看到这个,尤其是从事医疗保健工作的人。这个系列太棒了,请继续保持。”
非常感谢这条评论,[音乐] 我们非常感谢大家的所有邮件和评论。
本周的节目由 Chantel Damara 和我共同制作,Colin Kish 剪辑。协调制片人是 Matthew Amara,数字短片由 Edwin Janson 制作,动态图像设计师是 Ayush Madan Shetevar,[音乐] 摄影由 Max Susi 担任,电子提词由 Elisa Verley 负责。制作支持来自 Castina Cloud [音乐] 和 TVO 数字媒体服务团队。感谢 TVO 演播室团队。Laurie Few 担任数字内容执行制片人。Vanessa Case 担任媒体副总裁。非常感谢您的收听。