METHODS: The participants (aged 6-18 years) were 23 patients raised as males and 7 patients raised as females. Control data were obtained from representatives of the patients' siblings matched for age and gender. The Pediatric Quality of Life InventoryTM Version 4.0 (PedsQL) Generic Core Scales were used as the study tool.
RESULTS: In comparison with the reference data, the patient group had significantly lower overall PedsQL (p < 0.01) and school functioning (p < 0.01) scores. Also, the total PedsQL score was significantly lower in patients with DSD who were of female social sex as compared to the controls who were females. Family income, surgical procedures, degree of virilization, and mode of puberty did not influence the PedsQL scores.
CONCLUSION: This study revealed a poorer quality of life for patients with DSD as compared to the age-matched control group. This highlights the need for a skilled multidisciplinary team to manage this group of patients.
CASE: We report on a 19-year-old who is phenotypically male, with a 46,XX/46,XY mosaicism karyotype, who presented later in life with cyclical abdominal pain that resembled menstrual cramps and unilateral undescended testes.
SUMMARY AND CONCLUSION: He underwent laparoscopic hysterectomy and right salpingo-oophorectomy, resulting in cessation of his symptoms and improved sperm count.
PURPOSE: This study explores the menstrual experiences of people with DSD and sex reassignment in Nigeria.
METHODS: A qualitative approach with a phenomenological study design was employed in this study to explore and describe the experiences of people with DSD at the Usmanu Danfodiyo University Teaching Hospital in Sokoto, Nigeria. The data were collected using face-to-face interviews, transcribed verbatim, and analyzed using NVivo software.
RESULTS: The findings show that the participants experienced menstrual problems: men with menstruation and women with amenorrhea. The female participants generally described amenorrhea as a disappointment and linked menstruation with womanhood. Amenorrhea evinced both emotional and psychological effects. However, some of the female participants considered amenorrhea in a positive light and were happy with their lives without menstruation. The menstrual experiences of male participants included menarche, lower abdominal pain, regular monthly bleeding, and ovulation. The male participants described menstruation as a disaster in their lives and a source of anxiety, suicidal ideation, and depression. Menstruation negatively affected their psychosocial well-being.
CONCLUSIONS: The menstrual experience of individuals with DSD negatively affects their quality of life. The women with DSD in this study showed a generally poor knowledge of menarche, menstruation, and puberty, indicating that their parents had ignored the initial symptoms of DSD. DSD were only recognized at puberty because of the development of ambiguous physical traits and of the onset of menstruation in men and the confirmation of amenorrhea in women.
BACKGROUND: The quality of life of people with disorders of sex development depends largely on the availability of good psychosocial and psychosexual management. There is a lack of qualitative systematic reviews of the literature on the experiences of people with disorders of sex development.
DESIGN: The seven steps of qualitative meta-ethnography were employed in this review.
DATA SOURCES: The following electronic databases were systematically searched until January 2017: Science Direct, Scopus, Sage online, CINAHL, PsycINFO, Medline, Wiley Online Library, and Google Scholar. Search terms for this review were "disorders of sex development," "intersex," "ambiguous genitalia," "experiences," "qualitative study," and "method".
REVIEW METHOD: A 13-item scale was applied to evaluate the quality of the selected studies and synthesized using the principles of meta-ethnography.
FINDINGS: Twelve studies met the eligibility criteria. Six major themes described the experiences of people with disorders of sex development. These included a range of physical, psychological, social, and sexual experiences which affect their quality of life. Different coping strategies were employed by individuals who live with the lifelong condition.
CONCLUSION: Disorders of sex development affect the quality of life of people living with these disorders. Nurses are tasked with providing holistic care for people with disorders of sex development in order to improve their quality of lives. As such, there is a need to explore the experiences of nurses in the management of disorders of sex development.
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.