호르몬 불균형으로 난소에 작은 낭종(물혹)이 생기는 질환으로 알려진 '다낭성난소증후군'.

이 질환의 영문명 'PCOS'(Polycystic ovary syndrome)가 최근 'PMOS'(Polyendocrine Metabolic Ovarian Syndrome)로 변경되자 환자들이 환영을 표하고 있다.

새 명칭에 '대사'(Metabolic)와 '내분비'(Endocrine)라는 표현이 포함돼 단순 난소 질환이 아니라 호르몬·대사 질환이라는 의미를 담았기 때문이다.

환자들은 용어 변경을 계기로 진단 기준과 의료 현장의 판단에도 변화가 생기기를 기대했다.

◇ 14년만에 바뀐 명칭…"단순 난소 문제 아닌 호르몬·대사 질환"

25일 국제 학술지 란셋(The Lancet)에 발표된 논문에 따르면 이번 명칭 변경은 약 14년에 걸쳐 약 1만4천명 이상의 환자와 임상의 답변을 수집하고 56개 국제 전문학회 및 환자단체의 지지를 끌어낸 데 따른 결과물이다.

PMOS는 호르몬 불균형과 남성호르몬(안드로겐) 과다 분비에 따른 질환으로, 생리불순과 난임뿐 아니라 체중 변화와 혈당 조절 등에도 영향을 미친다. 이로 인해 인슐린 저항성이나 제2형 당뇨병 위험이 높아지는 것으로 알려져 있다.

가임기 여성의 6~15%가 겪는다는 이 질환의 명칭 변경은 기존 이름이 질환의 특성을 충분히 반영하지 못한다는 지적에 따라 세계 각국 의료진과 연구자, 환자 단체의 논의를 거쳐 추진됐다. 한국어 공식 명칭은 아직 발표되지 않았지만 직역하면 '다내분비 대사 난소 증후군'이다.

호주 모나쉬대 여성 생식 건강 연구 우수센터(CRE WHiRL) 주도로 구성된 국제 연구진은 기존 명칭 속 '다낭성'(Polycystic)이란 표현이 질환을 단순히 난소에 생기는 물혹 문제로 오해하게 해 진단을 지연시키거나 대사·호르몬 등 전신적 특성을 충분히 반영하지 못하도록 만들 수 있다고 지적했다.

실제로 국내 PMOS 환자들은 진단 과정에서 이 질환이 호르몬·대사 이상과 관련된 질환이라는 설명을 충분히 듣지 못했다고 토로했다.

올해 초 PMOS를 진단받은 최모(16) 씨는 키 161㎝, 몸무게 47㎏으로 저체중에 가까운 체격이었지만 진료 과정에서 체중 문제를 반복적으로 지적받았다며 "체중과 증후군이 왜 관련이 있는지 자세한 설명을 듣지 못했다"고 말했다.

8년 전 진단 받은 임모 씨(20대)는 "다낭성 경향이 있다"는 모호한 말과 함께 경구피임약을 처방받았다. 임씨는 약 복용 이후에도 생리 불순 증상이 반복되자 혈당과 인슐린 저항성에 대해 스스로 공부하며 몸을 관리했다.

그는 "왜 환자인 내가 직접 원인을 찾아야 하는지 억울했다"고 말했다.

PMOS 환자들은 새 명칭이 단순한 이름 변경에 그치지 않고 의료진과 사회 전반의 인식 변화를 끌어내길 기대했다.

임씨는 "기존 명칭은 질환의 본질을 왜곡하고 있었다고 생각한다"며 "새 명칭을 계기로 질환이 단순 생식 장애 질환이 아닌 대사·호르몬 장애 질환으로 이해되고 관련 연구와 치료도 확대되길 기대한다"고 말했다.

◇ "명칭 변경보다 '환자 맞춤형 진단·치료'가 우선"

전문가들도 기존 명칭이 질환의 특성을 충분히 설명하지 못했으며 적절한 처방도 이뤄지지 못한 면이 있다고 지적했다.

김주희 서울아산병원 산부인과 교수는 "과체중 PMOS 환자에게 체중 감량이 증상 완화에 효과적인 것은 사실이지만 정상 체중 환자에게 일괄적으로 체중 감량을 권고하는 것은 적절하지 않다"며 "마른 체형이더라도 PMOS 환자 약 75%에서 인슐린 저항성이 관찰된다"고 말했다.

그러면서 명칭 변경과 함께 환자 맞춤형 진단·치료가 이뤄져야 한다고 강조했다.

김 교수는 "피임약 처방은 남성호르몬 과다와 월경 불규칙 증상을 일시적으로 잡아주는 대증 치료(증상 완화 치료)"라며 "PMOS는 완치보다 관리의 개념으로 접근해야 하는 질환이기에 피임약 복용을 꾸준히 유지하는 것이 현재로서는 가장 중요한 전략"이라고 설명했다.

황규리 서울보라매병원 산부인과 교수는 "병 이름을 바꾸는 것보다 더 중요한 건 진단 방식을 바꾸는 것"이라며 "앞으로는 초음파 사진만 보는 게 아니라, 호르몬 수치와 실제 증상까지 함께 살펴보는 방향으로 진단이 이뤄져야 한다"고 당부했다.

일부 전문가들은 새로 바뀐 명칭도 PMOS의 핵심 원인인 남성호르몬 과다 현상을 충분히 담아내지 못할 수 있다며 추가적인 보완이 필요하다고 지적했다.

새 명칭의 '대사'라는 표현이 강조될 경우 다모증이나 여드름, 비만, 대사 이상 등 증상이 없을 경우 의료진조차 PMOS로 의심하지 않고 넘어갈 수 있기 때문이다.

김 교수는 "새 명칭이 기존 한계를 완전히 해소할 수 있는지에 대해서는 학계의 별도 검토가 필요하다"며 대한산부인과내분비학회 차원에서도 향후 국제적인 논의와 연구 진행 상황을 지속적으로 모니터링하며 새로운 명칭이 국내 임상 현장에 미칠 영향을 면밀히 검토해 나갈 예정이라고 덧붙였다.

seohyoju@yna.co.kr

Sindrom Ovarium Polikistik, dikenal sebagai kondisi di mana ketidakseimbangan hormon menyebabkan pembentukan kista kecil (kista air) di ovarium.

Ketika nama Inggris penyakit ini 'PCOS' (Polycystic Ovary Syndrome) baru-baru ini diubah menjadi 'PMOS' (Polyendocrine Metabolic Ovarian Syndrome), para pasien menyambut dengan baik.

Nama baru mencakup istilah 'Metabolik' (Metabolic) dan 'Endokrin' (Endocrine), membawa makna bahwa ini bukan sekadar penyakit ovarium tetapi penyakit hormon dan metabolik.

Pasien berharap bahwa perubahan istilah akan memicu perubahan dalam standar diagnosis dan pertimbangan di bidang medis.

◇ Nama yang Berubah Setelah 14 Tahun…"Bukan Sekadar Masalah Ovarium, Tetapi Penyakit Hormon dan Metabolik"

Menurut makalah yang diterbitkan pada tanggal 25 di jurnal akademik internasional The Lancet, perubahan nama ini adalah hasil dari pengumpulan respons dari lebih dari 14.000 pasien dan praktisi klinis selama sekitar 14 tahun, serta dukungan dari 56 organisasi profesional internasional dan kelompok pasien.

PMOS adalah penyakit yang disebabkan oleh ketidakseimbangan hormon dan sekresi berlebih dari hormon pria (androgen), yang mempengaruhi tidak hanya ketidakteraturan menstruasi dan infertilitas tetapi juga perubahan berat badan dan kontrol gula darah. Diketahui bahwa ini meningkatkan risiko resistansi insulin dan diabetes tipe 2.

Perubahan nama untuk kondisi ini, yang dialami oleh 6-15% wanita usia reproduksi, didorong melalui diskusi antara profesional medis, peneliti, dan kelompok pasien di seluruh dunia berdasarkan keberatan bahwa nama sebelumnya tidak mencerminkan karakteristik penyakit dengan cukup baik. Nama resmi dalam bahasa Korea belum diumumkan, tetapi terjemahan literalnya adalah 'Sindrom Ovarium Metabolik Poliendokrin'.

Tim peneliti internasional yang dipimpin oleh Pusat Keunggulan Penelitian Kesehatan Reproduksi Wanita Universitas Monash Australia (CRE WHiRL) menunjukkan bahwa istilah 'Polikistik' (Polycystic) dalam nama sebelumnya dapat menyebabkan kesalahpahaman bahwa penyakit ini hanya masalah kista di ovarium, yang dapat menunda diagnosis atau gagal mencerminkan karakteristik sistemik seperti metabolik dan hormon dengan cukup baik.

Pada kenyataannya, pasien PMOS dalam negeri mengeluh bahwa mereka tidak menerima penjelasan yang cukup selama proses diagnosis bahwa penyakit ini terkait dengan gangguan hormon dan metabolik.

Choi, seorang perempuan berusia 16 tahun yang didiagnosis dengan PMOS pada awal tahun ini, memiliki tinggi 161 cm dan berat 47 kg, yang tergolong di bawah berat badan normal, tetapi masalah berat badannya terus-menerus disoroti selama konsultasi medis. Dia berkata, "Saya tidak menerima penjelasan detail tentang mengapa berat badan terkait dengan sindrom ini."

Lim, seorang perempuan dalam 20-an tahun yang didiagnosis 8 tahun lalu, menerima resep pil KB oral dengan penjelasan yang samar bahwa dia "memiliki kecenderungan polikistik". Setelah minum obat terus-menerus mengalami gejala ketidakteraturan menstruasi, Lim mempelajari gula darah dan resistansi insulin sendiri untuk mengelola tubuhnya.

Dia berkata, "Saya merasa tidak adil mengapa saya sebagai pasien harus menemukan penyebabnya sendiri."

Pasien PMOS berharap bahwa nama baru tidak sekadar perubahan nama tetapi dapat membawa perubahan kesadaran di kalangan profesional medis dan masyarakat luas.

Lim berkata, "Saya pikir nama sebelumnya telah mendistorsi esensi penyakit ini," dan menambahkan, "Saya berharap bahwa dengan nama baru ini, penyakit ini akan dipahami bukan hanya sebagai gangguan reproduksi tetapi sebagai gangguan metabolik dan hormon, dan penelitian serta perawatan terkait juga akan diperluas."

◇ "Diagnosis dan Perawatan yang Disesuaikan dengan Pasien Harus Menjadi Prioritas Daripada Perubahan Nama"

Para ahli juga menunjukkan bahwa nama sebelumnya tidak menjelaskan karakteristik penyakit dengan cukup baik dan ada aspek di mana resep yang tepat tidak diberikan.

Prof. Kim Ju-hee dari Departemen Obstetri dan Ginekologi di Rumah Sakit Asan Seoul mengatakan, "Meskipun benar bahwa penurunan berat badan efektif dalam meringankan gejala pada pasien PMOS yang kelebihan berat badan, tidak tepat untuk secara universal merekomendasikan penurunan berat badan kepada pasien dengan berat badan normal," dan menambahkan, "Bahkan pada pasien dengan tubuh kurus, resistansi insulin diamati pada sekitar 75% pasien PMOS."

Dia menekankan bahwa bersama dengan perubahan nama, diagnosis dan perawatan yang disesuaikan dengan pasien harus dilakukan.

Prof. Kim menjelaskan, "Resep pil KB adalah perawatan simtomatik (perawatan pereda gejala) yang sementara mengatasi androgen berlebih dan gejala menstruasi yang tidak teratur," dan menambahkan, "Karena PMOS adalah penyakit yang harus didekati dengan konsep manajemen daripada penyembuhan lengkap, mempertahankan asupan pil KB secara konsisten saat ini adalah strategi paling penting."

Prof. Hwang Gyu-ri dari Departemen Obstetri dan Ginekologi di Rumah Sakit Boramae Seoul mengatakan, "Lebih penting daripada mengubah nama penyakit adalah mengubah cara diagnosis," dan menekankan, "Di masa depan, diagnosis harus dilakukan tidak hanya dengan melihat foto ultrasonografi tetapi juga dengan mempertimbangkan tingkat hormon dan gejala aktual."

Beberapa ahli menunjukkan bahwa nama baru juga mungkin tidak menangkap fenomena androgen berlebih yang merupakan penyebab inti PMOS dengan cukup baik dan diperlukan penyempurnaan lebih lanjut.

Ini karena jika istilah 'metabolik' dalam nama baru ditekankan, bahkan profesional medis mungkin tidak akan mencurigai PMOS dan akan melewatkannya jika gejala seperti hirsutisme, jerawat, obesitas, dan kelainan metabolik tidak ada.

Prof. Kim mengatakan, "Diperlukan tinjauan akademik terpisah untuk menentukan apakah nama baru dapat sepenuhnya mengatasi keterbatasan yang ada," dan menambahkan bahwa Asosiasi Obstetri dan Ginekologi Endokrin Korea juga akan terus memantau diskusi internasional masa depan dan perkembangan penelitian, dan akan melakukan tinjauan menyeluruh tentang dampak nama baru terhadap praktik klinis domestik.

seohyoju@yna.co.kr

Polycystic ovary syndrome, known as a disease where small cysts form in the ovaries due to hormonal imbalance.

The English name 'PCOS' (Polycystic ovary syndrome) for this disease was recently changed to 'PMOS' (Polyendocrine Metabolic Ovarian Syndrome), and patients are welcoming the change.

This is because the new name includes the terms 'Metabolic' and 'Endocrine,' conveying that it is not just a simple ovarian disease but a hormonal and metabolic disease.

Patients hoped that the terminology change would lead to changes in diagnostic criteria and medical practice.

◇ Name changed after 14 years... "Not just a simple ovarian problem but a hormonal and metabolic disease"

According to a paper published in the international journal The Lancet on the 25th, this name change is the result of collecting responses from over 14,000 patients and clinicians over approximately 14 years and gaining support from 56 international professional societies and patient organizations.

PMOS is a disease caused by hormonal imbalance and excess male hormone (androgen) secretion, affecting not only irregular menstruation and infertility but also weight changes and blood sugar control. It is known that this increases the risk of insulin resistance and type 2 diabetes.

The name change of this disease, which affects 6-15% of women of reproductive age, was promoted through discussion by medical professionals, researchers, and patient organizations from around the world based on the point that the existing name does not adequately reflect the characteristics of the disease. The official Korean name has not yet been announced, but a direct translation would be 'Polyendocrine Metabolic Ovarian Syndrome.'

An international research team led by Australia's Monash University Center for Research Excellence in Women's Reproductive Health (CRE WHiRL) pointed out that the term 'Polycystic' in the existing name could cause the disease to be misunderstood as simply a cyst problem in the ovaries, delaying diagnosis or failing to adequately reflect systemic characteristics such as metabolism and hormones.

In fact, domestic PMOS patients complained that they did not receive sufficient explanation during the diagnostic process about how this disease is related to hormonal and metabolic abnormalities.

Choi, 16, who was diagnosed with PMOS in early this year, had a near-underweight physique with a height of 161 cm and weight of 47 kg, but said she was repeatedly pointed out about weight issues during treatment and stated, "I did not receive a detailed explanation about why weight and the syndrome are related."

Lim, in her 20s, who was diagnosed 8 years ago, was prescribed oral contraceptives along with the vague statement "you have polycystic tendencies." After taking the medication, when irregular menstruation symptoms continued to repeat, Lim managed her health by studying blood sugar and insulin resistance on her own.

She said, "I felt unjustly treated that as a patient, I had to find the cause myself."

PMOS patients hoped that the new name would not just be a simple name change but would bring about changes in awareness among medical professionals and society as a whole.

Lim said, "I think the existing name was distorting the true nature of the disease," and added, "I hope that with the new name, the disease will be understood not as a simple reproductive disorder but as a metabolic and hormonal disorder, and that related research and treatment will be expanded."

◇ "Patient-tailored diagnosis and treatment should take priority over name change"

Experts also pointed out that the existing name did not adequately explain the characteristics of the disease and that appropriate prescriptions were not made.

Kim Joo-hee, professor of obstetrics and gynecology at Seoul Asan Medical Center, said, "While weight loss is effective in alleviating symptoms for overweight PMOS patients, it is not appropriate to recommend weight loss uniformly to normal weight patients," and added, "Even in those with lean physiques, insulin resistance is observed in approximately 75% of PMOS patients."

While emphasizing this, he stressed that patient-tailored diagnosis and treatment should be implemented along with the name change.

Professor Kim explained, "Contraceptive prescription is symptomatic treatment (symptom relief treatment) that temporarily addresses excess male hormone and irregular menstruation symptoms," and said, "Since PMOS is a disease that should be approached as a concept of management rather than cure, maintaining consistent use of contraceptives is currently the most important strategy."

Hwang Gyu-ri, professor of obstetrics and gynecology at Seoul Boramae Medical Center, said, "What is more important than changing the disease name is changing the diagnostic method," and urged, "In the future, diagnosis should be made not only by looking at ultrasound images but by considering hormone levels and actual symptoms together."

Some experts pointed out that the newly changed name may also not adequately capture the excess male hormone, which is the core cause of PMOS, and that additional supplementation is necessary.

This is because if the term 'metabolic' in the new name is emphasized, medical professionals may not suspect PMOS in cases where symptoms such as hirsutism, acne, obesity, or metabolic abnormalities are absent and simply overlook them.

Professor Kim said, "Separate review by the academic community is necessary to determine whether the new name can completely resolve existing limitations," and added that the Korean Society of Obstetrics and Gynecology will also continuously monitor future international discussions and research progress and plan to carefully examine the impact the new name will have on domestic clinical practice.

seohyoju@yna.co.kr