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女性子宫内膜异位症是什么?为什么会那么疼

  Female endometriosis

  女性子宫内膜异位症

  My painful periods started when I was about 14.I wore heat patches to school in the hope that they would help me last through the day.Sometimes they did.But sometimes I ended up in sick bay writhing in agony on the fold-out bed,where the receptionists didn’t know what to suggest because I’d already had my appendix removed.

  我大概14岁时月经初潮,从那以后便饱受痛经的折磨。我会敷着暖宝宝上学好熬过一整天,有时候确实能熬过去,但有的时候,我会在学校医务室的折叠床上痛苦地蜷曲着身体,校医都不知道怎么帮我,因为我的阑尾已经切除了。

  Ten years of pain later,I’m finally in the process of being diagnosed with endometriosis.But far from simplifying my issues,what I’ve seen during my many doctor’s appointments is that the disease remains poorly understood–and that its diagnosis and treatment can be a complicated and life-long ordeal.

  痛苦持续了十年之久。后来,我被诊断出患有子宫内膜异位症,但确诊并不意味着解决问题。我在看过无数次医生后发现,人们对这种疾病的了解十分有限,而且诊断和治疗十分复杂,痛苦可能会伴随一生。

  Endometriosis is a gynaecological condition associated with menstruation where tissue similar to the lining of the womb is found in other areas of the body,including the fallopian tubes,pelvis,bowel,vagina and intestines.In rare cases it has even been found in the lungs,eyes,spine and brain–in fact,the only place in the body it has never been found is the spleen.Symptoms include severe,sometimes debilitating,pelvic pain,fatigue and heavy periods.

  子宫内膜异位症是一种与月经相关的妇科疾病,类似子宫内膜的组织会生长在子宫以外的位置,包括输卵管、盆腔、阴道和肠道,极少数情况下还会长在患者的肺部、眼睛、脊柱,甚至大脑中,目前唯一没有发现过内膜组织的器官只有脾脏。患者症状包括盆腔剧痛,有时甚至痛到虚脱,还会感到疲劳,以及经期大量出血。

  While there are many lesser-known health conditions which are underfunded and under-researched,few are as common as endometriosis,which affects about 176m people globally.In the US,where,as in other countries,it’s estimated to affect one in 10 women of reproductive age,it receives about$6m(£4.7m)in research funding each year.Sleep research alone receives more than 50 times that amount.

  虽然有许多疾病更加鲜为人知,也更缺乏资金及相关研究,但都不如子宫内膜异位症这般常见——全球患有此病的人约有1.76亿。在美国等国家,大约每10个育龄妇女就有一个患此疾病。子宫内膜异位症每年的研究基金仅有600万美元(470万英镑),光是睡眠研究的年度经费就是这个数字的50倍还不止。

  Pain isn’t the only consequence of endometriosis.One study across 10 countries found that endometriosis costs each patient an average annual total of€9,579(£8,600)in healthcare,productivity and quality of life costs–that’s more than€26(£23.45)a day.It may be linked to infertility.And then there is the chance that the pain itself makes patients vulnerable to other conditions.

  子宫内膜异位症的问题远不只是疼痛而已。一项覆盖了10个国家的研究发现,患者在医疗、生育和生活质量方面的人均年支出高达9579欧元(8600英镑),相当于一天26欧元(23.45英镑)还要多。疾病还会导致不孕,疼痛还会增加患者罹患其他疾病的风险。

  “We have good evidence that having serious pain alters your central nervous system,alters how you respond to pain in the future and makes you potentially more susceptible to other chronic pain conditions,”says Katy Vincent,a senior pain fellow at the University of Oxford.

  牛津大学的高级疼痛学研究员文森特(Katy Vincent)说:“有充分的证据表明,剧烈的疼痛会影响人的中枢神经系统,改变人们以后对疼痛的反应,可能会增加其他慢性疼痛的风险。”

  For women who are symptomatic,and many are not,the primary symptom is usually acute pelvic pain with no obvious physical cause.That may make it enigmatic.But that it was a health condition experienced only by women–and is linked to menstruation,in particular–has made it more of an enigma than it perhaps could be.

  很多患者没有症状,若有则主要表现为急性盆腔疼痛,但并无明显的身体问题。正因为如此,这种疾病才会如此神秘莫测。而且患者都是女性,尤其又和月经有关,如此便更加神秘了。

  Ancient origins

  古老起源

  Microscopic discovery of endometriosis is most often attributed to Czech scientist Karl von Rokitansky in 1860,though this is disputed and previous more rudimentary microscopic discoveries have also been recorded.Records of endometriosis-like symptoms,meanwhile,date back to antiquity.It also has an overlap with the condition‘hysteria’,which derives for a Latin word for“of the womb”:one study of representations of pelvic pain in medical literature found that many cases dismissed as“hysteria”may well have been endometriosis.“The original meaning of hysteric convulsions during this era generally referred to women falling to the ground,doubled over in a foetal position,”the study notes.“They could very easily be describing a response to acute abdominal pain.”

  普遍认为是捷克科学家罗基坦斯基(Karl von Rokitansky)在1860年通过显微镜发现了子宫内膜异位症。但这个说法存在争议,此前已经有一些更加基础的微观发现记录在案,而且和子宫内膜异位症相似的症状记载能够一直追溯到古代。它和“歇斯底里”的病症有相似之处,而“歇斯底里”就来源于拉丁词语“子宫的”。一项研究对医学文献中盆腔疼痛的临床症状进行了调查,结果表明,许多“歇斯底里症”可能就是子宫内膜异位症。研究指出:“在当时,歇斯底里地痉挛本义指的就是女人摔倒在地,像胎儿一样蜷缩,很可能是在描述急性腹痛。”

  The historic underestimation and misunderstanding of endometriosis continues to inform modern medicine.Researched less than other conditions,it’s also less understood.The cause of endometriosis is not known.There is no cure.It often takes up to around a decade to get diagnosed,and the only means of definitive diagnosis is a form of keyhole surgery known as laparoscopy.

  过去人们对子宫内膜异位症的低估和误解也影响了现代医学。相关的研究较少,对它的认识也不足,子宫内膜异位症的病因尚不清楚,目前也没有治愈方法。通常,患者确诊就要花上约10年的时间,而唯一的确诊手段是一种名为腹腔镜检查的微创手术。

  I spoke to three women now diagnosed with endometriosis,all in their 20s and 30s.Along the way,all three had been misdiagnosed with other conditions and had their symptoms dismissed or underestimated.“I never remember a single GP or hospital doctor,anybody,saying the word‘endometriosis’.Or just even asking the right questions,”says Alice Bodenham,31.“It’s very much‘it could be this’,or‘you’re making it up’.”

    蛐蛐英语 www.qqenglish.com

  我采访了三位确诊了这种疾病的女性,都是二、三十岁。她们都曾被误诊,症状也曾被忽视或低估。博登翰(Alice Bodenham)今年31岁,她说:“从来没有一位全科医师或医院医生提过‘子宫内膜异位症’,他们甚至没有问对问题,都是说‘可能是这种病’或是‘你想太多了’。”

  Part of the problem is the systemic tendency to dismiss women’s pain,when pain is of the most common symptoms of endometriosis.I experienced this myself when I found one internal ultrasound scan acutely painful and informed the doctors:I later received my results in the post with the note“patient experienced mild discomfort during scan”.Making matters worse,there’s no correlation between the level of pain experienced and the severity of an individual’s condition.

  问题的部分原因在于人们总是对女性的疼痛嗤之以鼻。然而,疼痛是子宫内膜异位症最常见的症状。我自己也有切身体会,有一回在做体内超声波扫描时,我感到一阵剧痛并把情况告诉了医生。但是后来我拿到检查报告,发现上面写的是“患者在接受扫描时感到轻微不适”。更糟糕的是,疼痛程度和患者的病情之间没有直接联系。

  As there are no non-invasive means of definitive diagnosis,without a physician believing a patient’s description of symptoms,there’s no referral for a diagnosis.But women’s symptoms,too,are often dismissed as being“all in your head”.

  如果不开刀,子宫内膜异位症就无法确诊。如果外科医生不相信病人描述的症状,就不会转介病人进行手术确诊,但女性患者描述的病症经常被冠以“想太多”的名头而被忽视。

  It may be little surprise,then,that one UK government survey of 2,600 women with endometriosis found that 40%had visited the doctor 10 or more times before being referred to a specialist.Bodenham,for example,collapsed multiple times before her pain was taken seriously.

  那么这个情况也就不足为奇了。英国政府曾经调查过2600位子宫内膜异位症患者,发现超过40%的女性至少在看了10次医生后才被转介给专科医生。博登翰和31岁的罗德里吉尔斯(Krystal Rodriguez)在疼痛被重视前都疼晕过好几次。

  Caitlin Conyers,24,who runs the blog My Endometriosis Diary,began to suspect she might have the condition through her own research,but this was dismissed by her physicians.“About three years ago I ended up in an urgent care centre.I’d been Googling the different causes and one was endometriosis and I did suggest this to the doctor at the time and they just said,‘Oh no,it definitely isn’t that’,”she says.“I explained that I had really bad period pain and general abdomen pain and they still said no.”

  康耶尔斯(Caitlin Conyers)今年24岁,开了名为“我的子宫内膜异位症日记”的博客。她通过查找信息怀疑自己可能患了这种疾病,但医生不这么认为。她说:“大概三年前,有一次我痛得直接进了紧急护理室。我上网查了很多病因,其中一个就是子宫内膜异位症。我也跟医生说了,但他们却说‘绝对不可能’。我还说自己痛经十分严重,而且也有腹痛症状,但他们还是说不可能。”

  Oxford’s Vincent isn’t hesitant about whether gender plays a role.“If every 14-year-old boy went to the GP saying,‘I miss two days of school every month’,they would stop missing school every month,”she says.

  牛津大学的文森特研究员坚决认为性别是一个原因。她说:“假设每个14岁男孩都到全科医生那里说‘每个月我都有两天上不成课’,医生就一定会想办法解决这个问题。”

  Making matters more complicated,physicians also sometimes fail to find evidence of lesions on initial scans,particularly if the lesions are superficial.Endometriosis forums are littered with stories of false negative ultrasound scans.

  有时,医生并不能在初期扫描检查时就发现病变迹象,如果病变发生在表层就更难发现。如此一来,问题就更加复杂了。在子宫内膜异位症的研讨会上,常常有医生讲到虽然超声波检查结果呈阴性,但并非没有问题。

  A lack of awareness on the patient side can delay diagnosis too.Menstrual taboos still persist and two of the women I spoke to reported being told,whether by family or through sexual education,that periods might be painful or uncomfortable.What they never understood was how painful(or not)a normal period should be.

  缺乏对患者的关怀也会延误诊断。女性月经的话题仍被大众避讳,采访中有两位女性都说,她们从家人或性教育课堂上得知,经期可能会有疼痛或不适,但从来不知道正常的痛经有多疼,或者月经就不疼。

  Endometriosis charities and campaigners around the world are working to raise awareness,and their efforts seem to hav helped.In 2017 the Australian government launched a National Action Plan For Endometriosis which seeks to“improve the treatment,understanding and awareness”of the condition,and increased funding to A$4.5m(£2.5m),new clinical guidelines and–crucially–for the subject to be made part of primary healthcare professionals’medical education.In the UK,government advisory body the National Institute for Health And Care Excellent(Nice)released guidelines in 2017 with the aim of standardising diagnosis and treatment pathways for patients.

  世界各地致力于子宫内膜异位症的慈善机构和活动家正在努力提高公众的认识,他们的努力似乎也有所成效。2017年,澳大利亚政府启动了“子宫内膜异位症国家行动计划”(National Action Plan For Endometriosis),旨在提高治疗水平、公众理解以及大众认知,还将资金增加至450万澳币(250万英镑),制定了新的临床指南,并且做了一项重要决定,将子宫内膜异位症纳入了初级医疗保健专业人员的医学教育。英国政府顾问机构,英国国家健康与临床卓越研究所(National Institute for Health And Care Excellent)也于2017年发布了一项纲要,旨在为患者提供规范的诊断和治疗方案。

  But while that’s a good step in the right direction,there already are many guidelines for GPs to juggle,says Anne Connolly,clinical champion for women’s health at the Royal College of GPs.Lone Hummelshoj,chief executive of the World Endometriosis Society,adds that the lack of specialist centres is another worldwide problem.

  康诺利(Anne Connolly)是英国皇家全科医生学院(Royal College of GPs)女性健康的临床主任,她表示虽然发布纲要是一件好事,但是全科医生要应付的纲要已经够多了。世界子宫内膜异位症协会(World Endometriosis Society)首席执行官休谟斯鸠(Lone Hummelshoj)补充说,缺乏专科门诊是另一个全球性的问题。

  No quick fix

  没有权宜之计

  Even after a diagnosis is reached,symptom management is by no means straightforward–and misinformation persists here too.

  即便确诊成功,治疗也不容易,而且还存在诸多误导。

  Some medical practitioners still tell patients pregnancy is an effective treatment.One physician this year told me she suspected endometriosis–but,she added,“there’s not much we can do unless you fancy getting pregnant”.Given that the disease can impact fertility of patients,this seems at the very least insensitive.It’s also inaccurate:while it may relieve symptoms of endometriosis,it’s only for the duration of the pregnancy.

  有些医生仍然告诉患者怀孕是一种有效的治疗手段。今年有一位医生怀疑我有子宫内膜异位症,但是她又补充道:“除非你考虑怀孕,否则我们也无能为力。”疾病会影响患者的生育能力,因此这个说法非常不合理,而且也不准确:虽然怀孕可以缓解子宫内膜异位症的症状,但只是在怀孕期间。

  Meanwhile,writer and performer Lena Dunham raised the profile of hysterectomy as a treatment for endometriosis by writing about her choice to undergo the surgery in Vogue US earlier this year.But its use as a treatment for endometriosis is controversial.As the condition is characterised by lesions outside of the uterus not inside of it,its removal is by no means a cure and endometriosis can recur afterwards.

  今年早些时候,作家兼演员邓纳姆(Lena Dunham)在接受美版《时尚》杂志(Vogue)采访时说她切除了子宫来治疗子宫内膜异位症,这一治疗方法于是更加广为人知,但仍然饱受争议。病变是发生在子宫外部而非内部,因此切除子宫并不是个办法,疾病仍会复发。

  Because the development of endometriosis lesions is controlled by oestrogen,hormonal treatments are often one of the first prescribed.These can help manage the condition,but do not cure it,and can have their own side effects.A 2016 study by researchers in Denmark found that women using hormonal contraceptives were more likely to seek treatment for depression.

  子宫内膜异位症的病变受雌激素控制,因此一般会先采用激素疗法。这种手段能帮助控制病情,但并不能根除疾病,而且往往会有副作用。2016年丹麦的一项研究发现,使用激素类避孕药的女性发生抑郁症的可能性更高。

  Another potential treatment is medical menopause.However,it is not a long-term option because it can affect bone density,particularly in young people,and,although rare,one of the potential side effects cited by the brand Zoladex is accidental full menopause.Cook told me there is a lack of informed consent around the use of this treatment.She says,“One of the things I hear a lot of is the number of women who end up taking drugs or having injections to go into medical menopause and they do not realise that’s what it is.”

  另一种治疗方法是医学停经。但这不是长久之计,会影响骨密度,对年轻女性尤其如此,而且,药品厂家诺雷得(Zoladex)表示,停经药物可能会导致永久性闭经,虽然这种情况非常少见。库克(Cook)告诉我,这种治疗手段并没有给予患者知情权,她说:“我经常听说,女性被通过药物或注射等医学手段停经,但是她们并不知道这是在做什么。”

  As such,there is research ongoing into potential alternatives.

  因此,人们正在研究是否有其他的治疗手段。

  “Drug treatments for endometriosis are entirely focused on hormones and we need something else because we know for a lot of women that doesn’t work very well,”says Krina Zondervan,a professor of reproductive and genomic epidemiology at the University of Oxford.“And it gives a lot of side effects that women are not that happy to experience in the long term.”

  牛津大学生殖和基因流行病学教授桑德范(Krina Zondervan)说:“子宫内膜异位症的药物治疗都是通过激素,我们需要从其他角度突破,因为我们发现激素治疗在很多女性身上的效果并不好。副作用太多,女性并不想将它作为长期的治疗方案。”

  Although they treat only the symptoms,not the condition,painkillers are another option.But they aren’t without adverse effect,either.Bodenham tells me how the opioid painkillers she’s been taking for the past three years have left her with a constellation of side-effects including“anaemia and hypertension”.She says,“I used to run a 5k every week…and now some days just walking downstairs to get a glass of water feels like doing a marathon.”

  止痛药也是一种选择,虽然只能缓解症状,对于病情并无作用。但它也有副作用。博登翰告诉我,过去三年她一直在服用类鸦片止痛药,饱受其副作用之害,“包括贫血和高血压”,她说:“以前我每周都能跑五公里……但是现在,下楼喝个水就跟跑马拉松似的。”

  Despite this,Bodenham feels lucky to receive them–she knows trying to access strong painkillers can lead to accusations of addiction.(There is also a risk that use of opioid painkillers will lead to abuse or dependency,although this is small among those with no history of substance abuse or addiction.)

  尽管如此,博登翰还是很高兴有止痛药,她很清楚服用强力止痛药可能会上瘾。(类鸦片止痛药还可能会导致使用过度或产生药物依赖。虽然对于无药物滥用或药物依赖史的人来说这种情况很少发生。)

  There is some hope.The illness’profile is on the rise and efforts are being made to educate GPs and patients about pelvic pain.But as patients wait for the medical system to catch up,their symptoms are still being misunderstood and their illnesses misdiagnosed with serious mental and physical health consequences.

  希望也是有的。人们对于疾病的了解正在不断完善,也正在向全科医生以及患者普及盆腔疼痛的知识。但在患者等待医疗系统迎头赶上的同时,她们的症状仍然在被曲解,还是有误诊,对身心都造成了极大影响。

  Having found that birth control adversely affected my mental health,my next step is deciding whether to start treatment via the Mirena coil’s low dose of hormone,or to continue pursuing a definitive diagnosis via laparoscopy.But laparoscopy would require several weeks of recovery–and as a freelance writer with little job stability,I would need more savings than I have.It’s one more example of the difficult choices women with chronic pelvic pain face every day.

  在发现避孕会有损我的心理健康之后,我开始思考使用曼月乐(Mirena)避孕环低剂量的激素来治疗,还是先通过腹腔镜检查进行确诊。但是腹腔镜检查往往需要数周的恢复时间,身为一名工作不怎么稳定的自由撰稿人,我手头上的积蓄并不允许我这么做。这又是一个慢性盆腔疼痛女性患者日常需要面临的抉择之一。

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