Study Objective

To explore the effect of the diagnosis of Mayer-Rokitansky-Küster-Hauser (MRKH) syndrome on affected Malaysian women.

Design

Qualitative study with a quantitative component.

Setting

Pediatric and adolescent gynecology unit at Universiti Kebangsaan Malaysia Medical Centre, Malaysia.

Participants

Twelve women with MRKH.

Interventions

Face-to-face interview and short questionnaire.

Main Outcome Measures

Thematic analysis was used to understand participants’ experiences.

Results

There were 7 themes identified: (1) delayed diagnoses; (2) doctors' roles and attitudes; (3) gender identity; (4) family and society's response; (5) reaction toward infertility; (6) managing sexual intimacy; and (7) coping mechanisms. Several participants consulted their physicians regarding their primary amenorrhea at an opportunistic setting. When they were referred to the gynecologists, they were dismayed at the lack of information given. The term, “MRKH” plays an important role to ease information-seeking. Participants felt that the doctors were insensitive toward them. Mental illness is a significant complication of MRKH. All participants acknowledged that infertility was the hardest part of the condition. The importance of blood lineage affects their outlook on childbearing options. Some were afraid of sexual intimacy and worried that they would not be able to satisfy their partners. Participants gained support and bonded with their counterparts in the MRKH support group.

Conclusion

A multidisciplinary approach including medical, psychological, and social support is essential for the management of MRKH. Adequate information and sexual education plays the utmost importance in preventing social-related complications of MRKH.

中文翻译：

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子宫缺失，诊断遗漏和护理缺失。马来西亚妇女生活中的Mayer-Rokitansky-Küster-Hauser综合征

研究目的

探讨Mayer-Rokitansky-Küster-Hauser（MRKH）综合征的诊断对受影响的马来西亚妇女的影响。

设计

定量研究的定性研究。

环境

马来西亚Universiti Kebangsaan马来西亚医学中心的儿科和青春期妇科科。

参加者

十二名患有MRKH的妇女。

干预措施

面对面访谈和简短问卷。

主要观察指标

主题分析用于了解参与者的经验。

结果

确定了7个主题：（1）延迟诊断；（2）医生的角色和态度；（3）性别认同；（四）家庭和社会的回应；（5）对不孕症的反应；（6）处理性亲密关系；（七）应对机制。几位参与者在机会性环境中就其原发性闭经咨询了医生。当他们被转诊给妇科医生时，他们对所提供的信息不足感到沮丧。“ MRKH”一词在简化信息搜索方面起着重要作用。参加者感到医生对他们不敏感。精神疾病是MRKH的重要并发症。所有参与者都承认，不孕是该病最难的部分。血统的重要性会影响他们对生育选择的看法。有些人害怕性亲密，担心无法满足伴侣的需求。与会者获得了支持，并与MRKH支持小组的同行保持了联系。

结论

包括医学，心理和社会支持在内的多学科方法对于MRKH的管理至关重要。充分的信息和性教育对于预防MRKH的社会相关并发症至关重要。