Objective
The objective of the study was to investigate health, well-being, and sexual function in women with Rokitansky syndrome.
Study Design
Fifty-eight women with Rokitansky syndrome completed 4 questionnaires assessing health-related quality of life, emotional distress, and sexual function and attended for a vaginal examination.
Results
Participants reported better overall physical health and poorer overall mental health compared with normative data. Anxiety levels were higher, especially for women who had undergone vaginal treatment. Sexual wellness and function scores were poor. Mean vaginal length was 5.4 cm and was greater in women currently sexually active. Vaginal length had a positive correlation with overall sexual satisfaction but was not related to overall quality of life.
Conclusion
Rokitansky syndrome has a negative impact on emotional and sexual wellness. Relationships between physical and psychological parameters are complex and require further exploration. There is a need for better treatment studies using prospective methodology to assess the effects of surgical and nonsurgical treatments.
Women with Rokitansky syndrome (Meyer-Rokitansky-Kuster-Hauser syndrome) have agenesis of the uterus and vagina. Until now, the key focus of clinical management has been to increase vaginal size to permit penetrative sexual intercourse. Depending on presentation and operative history, vaginal lengthening may be achieved by surgical and nonsurgical techniques. Vaginal length measurements are frequently used as the single parameter on which to quantify treatment success and, until recently, only clinical anecdotes existed for sexual experience and function.
Few individuals diagnosed with a disorder of development, including Rokitansky syndrome, are happy to disclose their diagnosis, even to people to whom they are closest. Permanent loss of bodily integrity and fertility and the need for an artificially constructed vagina can be surmised to have an impact on identity and self-evaluation. These challenges may compromise emotional well-being, relationship outcomes, and sexual function. Given what is already known about the unrelenting emotional distress associated with infertility alone, the methodical identification of emotional and sexual difficulties is conspicuous by the absence in the literature on Rokitansky syndrome.
The aims of this study were to first of all describe what can be expected in terms of overall health and well-being in women with Rokitansky syndrome. The second aim was to explore the relationships between vaginal length and psychosexual wellness and function. The final aim was to identify what lessons may be drawn for future research and clinical management.
Materials and Methods
This study took place over a 2 year period at a multidisciplinary clinic in a tertiary referral service for adults with disorders of sex development (DSD). The study was approved by the Committee on the Ethics of Human Research. All women with a confirmed diagnosis of Rokitansky syndrome who had been seen in our clinic within the previous year were invited to take part in the study. Length of follow-up under our clinic ranged from 6 months to 5 years. Of the 93 women identified, 4 had moved overseas and 2 did not have contactable addresses. Of the 87 eligible research participants, 56 of 87 (64%) took part in the study.
Each research participant attended for a vaginal examination. Vaginal length was measured as previously reported by this team by inserting a cotton bud into the vagina; the length in centimeters from the posterior fourchette to the most proximal part of the blind ending vagina was recorded. Medical notes were reviewed to confirm the diagnosis and record surgical and nonsurgical interventions.
All participants were asked to complete self-administered standardized questionnaires assessing psychosexual wellness, emotional distress, and health-related quality of life. In addition, sexual function was assessed in sexually active participants by self-administered standardized questionnaires described in the following text. All questionnaires chosen for this study have been previously developed as research tools using a general population, which then allows us to compare our clinical data with normative data. The term, sexually active, was used to mean penetrative vaginal intercourse.
Short Form 12 Health Survey (SF-12)
The SF-12 is a brief evaluation of health-related quality of life, developed as a shorter alternative to the Short Form-36. The SF-12 contains 12 items that lead to 2 final summary scores: physical health (PCS-12) and mental health (MCS-12). Scoring is based on the description by the original authors and a higher physical (PCS-12) or mental (MCS-12) health score reflects better quality of life.
Hospital Anxiety and Depression Scale (HADS)
The HADS is a 14 item brief screening assessment of anxiety and depression, markers of emotional distress, in nonpsychiatric hospital patients. It was developed in the United Kingdom, and since its introduction in 1983, it has been validated and widely used in nonclinical, clinical, and research settings. Of the 14 items, 7 items form the anxiety subscale and a further 7 items form the depression subscale. Patients select their response to each item on a 4 point scale. Each response is scored from 0 to 3, and the sum of the scores of all the items in each subscale gives a final score. A score of 7 or lower indicates normative functioning for each domain, with 8-10 reflecting borderline status and 11 or higher suggesting significant distress.
Female Sexual Function Index (FSFI)
Sexually active participants completed the FSFI. The 19 questions assess 6 domains of female sexual function: sexual desire, arousal, lubrication, orgasm, sexual satisfaction, and pain during sexual intercourse. Higher scores reflect better sexual function.
Multidimensional Sexuality Questionnaire (MSQ)
The MSQ was developed to assess psychological tendencies associated with sexual relationships. Unlike many sexual function assessments, completion of the MSQ is not restricted only to people who are sexually active because responses can be based on a current, past, or imagined relationship. The assessment tool comprises 12 subscales, each with 5 items (60 items) assessing: sexual esteem, sexual preoccupation, internal sexual control, sexual consciousness, sexual motivation, sexual anxiety, sexual assertiveness, sexual depression, external sexual control, sexual monitoring, fear of sexual relationships, and sexual satisfaction. Individuals rate their level of agreement with each item on a 5 point scale. The sum of each item in each subscale is than added up to give a final subscale score (maximum score of 20). A higher score means a poorer outcome. The MSQ is useful to allow internal comparisons, but statistical comparisons cannot be performed because SDs for the normative data are not available.
Statistical analysis
All statistical analysis was performed using SPSS version 16.0 (SPSS Inc, Chicago, IL). Questionnaires were assessed using published standardized scoring systems. Comparison of mean scores from questionnaires were analyzed using 1 way Student t test compared with reference data for 2 groups and analysis of variance for more than 2 groups. Correlations between variables were sought using Spearman correlation coefficients.
Stay updated, free articles. Join our Telegram channel
Full access? Get Clinical Tree
