Living with permanent infertility: A German study on attitudes toward motherhood in individuals with Complete Androgen Insensitivity Syndrome (CAIS) and Mayer-Rokitansky-Küster-Hauser Syndrome (MRKHS).

In this study the authors examined the issue of permanent infertility in two diagnoses of the diverse sex developments (DSD) spectrum: Complete Androgen Insensitivity Syndrome (CAIS) and Mayer-Rokitansky-KÏster-Hauser Syndrome (MRKHS). The participants with CAIS (n = 12) was older, showed a lower wish for a child and was less distressed about their infertility compared to participants with MRKHS (n = 49). Our data indicated an "indifferent" attitude toward motherhood in CAIS and an "ambivalent" attitude in MRKHS. Depression was frequent in both. Infertility is a source of distress. However, the two groups seem to cope in different ways. Comprehensive medical information and psychological support should be provided.

[The Wish for a Child in the Case of (Permanent) Infertility: Development of the "German Questionnaire on Attitudes Toward Motherhood"]. / Kinderwunsch bei (permanenter) Infertiliät: Entwicklung und Ergebnisse des "Fragebogens Einstellungen zur Mutterschaft (FEMu)".

Study 1 Development of the questionnaire Most questionnaires on attitudes toward motherhood presume that the subject is fertile and positive and negative attitudes are represented on a one-dimensional scale. Moreover, the questionnaires often do not provide German versions and German norms. The aim of this study is to examine whether the German Questionnaire on Attitudes toward Motherhood ("FEMu") can be used to describe attitudes toward motherhood multi-dimensionally and whether it is applicable independent of a person's fertility status. The FEMu was developed based on a female sample (n=932) using principal factor analysis (oblique rotation) which yielded 2 independent main factors ("pro child", "contra child") with 5 subfactors (privation/conformation, attractiveness/balance, incompleteness, relation, affiliation) and 4 prototypes (idealization, rejection, ambivalence, indifference). Study 2Evaluation of clinical Samples of people with Complete Androgen Insensitivity Syndrome (CAIS, n=12), Mayer-Rokitansky-Küster-Hauser Syndrome (MRKHS, n=49) and Polycystic Ovary Syndrome (PCOS, n=55) were included for testing. The first 2 suffer from permanent infertility, in the latter fertility is compromised. The intensity of their wish for a child, the FEMu main factors and the prototypes were analyzed. The independence of pro and contra child scores and the prototypes were emipirically confirmed. Participants with CAIS had a low wish for a child and an indifferent attitude toward motherhood, women with MRKHS had a moderate wish for a child and were ambivalent, women with PCOS had a maximum wish for a child and idealized motherhood. Conclusion The FEMu represents attitudes toward motherhood in a multi-dimensional way. It is appropriate for use in fertile and infertile individuals and can be applied in research and single-case settings. The FEMu results can be useful in individual counseling, e. g. within the scope of fertility treatmernt, at gynecological consultations, in pregnancy counseling or psychological counseling. In psychotherapy the results can help to develop suited interventions. The FEMu could also bring about valuable insights outside of the clinical setting, e. g., in the realms of family planning and women's conflict between family and career.

Sexual life and sexual wellness in individuals with complete androgen insensitivity syndrome (CAIS) and Mayer-Rokitansky-Küster-Hauser Syndrome (MRKHS).

INTRODUCTION: Sexual wellness depends on a person's physical and psychological constitution. Complete Androgen Insensitivity Syndrome (CAIS) and Mayer-Rokitansky-Küster-Hauser Syndrome (MRKHS) can compromise sexual well-being. AIMS: To compare sexual well-being in CAIS and MRKHS using multiple measures: To assess sexual problems and perceived distress. To gain insight into participants' feelings of inadequacy in social and sexual situations, level of self-esteem and depression. To determine how these psychological factors relate to sexual (dys)function. To uncover what participants see as the source of their sexual problems. METHODS: Data were collected using a paper-and-pencil questionnaire. Eleven individuals with CAIS and 49 with MRKHS with/without neovagina treatment were included. Rates of sexual dysfunctions, overall sexual function, feelings of inadequacy in social and sexual situations, self-esteem and depression scores were calculated. Categorizations were used to identify critical cases. Correlations between psychological variables and sexual function were computed. Sexually active subjects were compared with sexually not active participants. A qualitative content analysis was carried out to explore causes of sexual problems. MAIN OUTCOME MEASURES: An extended list of sexual problems based on the Diagnostic and Statistical Manual of Mental Disorders, 4th ed., text revision, by the American Psychiatric Association and related distress. Female Sexual Function Index (FSFI), German Questionnaire on Feelings of Inadequacy in Social and Sexual Situations (FUSS social scale, FUSS sexual scale), Rosenberg Self-Esteem Scale (RSE), Brief Symptom Inventory (BSI) subscale depression. Open question on alleged causes of sexual problems. RESULTS: The results point to a far-reaching lack of sexual confidence and sexual satisfaction in CAIS. In MRKHS apprehension in sexual situations is a source of distress, but sexual problems seem to be more focused on issues of vaginal functioning. MRKHS women report being satisfied with their sex life. CONCLUSION: Different conditions can affect individuals in diagnosis-specific ways despite some shared clinical features. Professionals should adopt an interdisciplinary approach and provide custom-made care in order to promote sexual well-being in patients.

[A questionnaire for the assessment of women's perception of their own femininity: a study on women with Mayer-Rokitansky-Kuster-Hauser-syndrome and women with polycystic ovary syndrome]. / Fragebogen zum Erleben der eigenen Weiblichkeit (FB-W): Ergebnisse von Frauen mit Mayer-Rokitansky-Küster-Hauser Syndrom und Frauen mit polyzystischem Ovarsyndrom.

Women with Mayer-Rokitansky-Kuster-Hauser syndrome (MRKHS) or polycystic ovary syndrome (PCOS) experience substantial changes in female body characteristics. It was investigated how this is associated with changes concerning the experience of one's own femininity. A questionnaire was developed to measure the experience of one's own femininity. The question-naire assesses how important several aspects are to women for their experience of their own femininity. Data from 49 women with MRKHS and 55 women with PCOS were compared to a non-clinical sample (932 women). The experience of their own femininity differed between the clinical groups as well as in comparison to the control sample. Diagnosis-specific characteristics emerged, which should be considered in the treatment of affected women. The developed questionnaire proved to be suitable for measuring differences in the experience of one's own femininity between groups of gynecological -patients.

Sexual Function and Socio-Sexual Difficulties in Women with Polycystic Ovary Syndrome (PCOS).

Introduction PCOS is the most common endocrine syndrome in women of the reproductive age that has manifold effects on the life of affected women. Little scientific attention has been devoted to these women's sexual lives. Aim To investigate sexual quality of life in women with PCOS. Methods The sample size was n = 44. Measures employed were: An extended list of sexual dysfunctions and perceived distress based on DSM-IV-TR, Female Sexual Function Index (FSFI), German Questionnaire on Feelings of Inadequacy in Social and Sexual Situations (FUSS), Rosenberg Self-Esteem Scale (RSE), Brief Symptom Inventory (BSI) subscale depression. The relationships of these components were examined including further variables (body mass index, degree of hirsutism using the Ferriman-Gallwey Score, wish for a child). An open question about what participants see as the source of their sexual problems was presented. Results Only moderate impairment in sexual function was detected, but feelings of inadequacy in social and sexual situations were markedly elevated and positively correlated with the degree of hirsutism. Depression showed to be a major problem. Conclusion Patients with PCOS should be screened for socio-sexual difficulties and emotional problems. Specialized psychological and sexological counselling can complement patient care.

Gender Role, Gender Identity and Sexual Orientation in CAIS ("XY-Women") Compared With Subfertile and Infertile 46,XX Women.

The perception of gender development of individuals with complete androgen insensitivity syndrome (CAIS) as unambiguously female has recently been challenged in both qualitative data and case reports of male gender identity. The aim of the mixed-method study presented was to examine the self-perception of CAIS individuals regarding different aspects of gender and to identify commonalities and differences in comparison with subfertile and infertile XX-chromosomal women with diagnoses of Mayer-Rokitansky-Küster-Hauser syndrome (MRKHS) and polycystic ovary syndrome (PCOS). The study sample comprised 11 participants with CAIS, 49 with MRKHS, and 55 with PCOS. Gender identity was assessed by means of a multidimensional instrument, which showed significant differences between the CAIS group and the XX-chromosomal women. Other-than-female gender roles and neither-female-nor-male sexes/genders were reported only by individuals with CAIS. The percentage with a not exclusively androphile sexual orientation was unexceptionally high in the CAIS group compared to the prevalence in "normative" women and the clinical groups. The findings support the assumption made by Meyer-Bahlburg ( 2010 ) that gender outcome in people with CAIS is more variable than generally stated. Parents and professionals should thus be open to courses of gender development other than typically female in individuals with CAIS.