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Emotional and sexual wellness and quality of life in women with Rokitansky syndrome
Lih-Mei Liao, BSc, MSc, PhD; Gerard S. Conway, MD, FRCP; Ida Ismail-Pratt, MB ChB; Maligaye Bikoo, RGN, DMS; Sarah M. Creighton, MD, FRCOG
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 com-

nal 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 emo-

pleted 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 vagi-

tional 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. Key words: quality of life, Rokitansky syndrome, sexual function, vaginal dilation

Cite this article as: Liao L-M, Conway GS, Ismail-Pratt I, et al. Emotional and sexual wellness and quality of life in women with Rokitansky syndrome. Am J Obstet Gynecol 2011;205:117.e1-6.

omen 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.1-3 Vaginal length measurements are frequently used as the single parameter on which to

From the Elizabeth Garrett Anderson UCL Institute of Womens Health, University College London, London, United Kingdom.
Received Oct. 28, 2010; revised Feb. 14, 2011; accepted Feb. 28, 2011. Reprints: Sarah M. Creighton, MD, The University College London Elizabeth Garrett Anderson Institute of Womens Health, Second Floor North, 250 Euston Rd., London NW1 0PG, UK. sarah.creighton@uclh.nhs.uk. This work was undertaken at University College London Hospitals/University College London, which received a proportion of funding from the funding scheme of the National Institute for Health Research Biomedical Research Centres, Department of Health. 0002-9378/$36.00 2011 Mosby, Inc. All rights reserved. doi: 10.1016/j.ajog.2011.03.013

quantify treatment success and, until recently, only clinical anecdotes existed for sexual experience and function.4 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.5 Permanent loss of bodily integrity and fertility and the need for an articially 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 identication of emotional and sexual difculties is conspicuous by the absence in the literature on Rokitansky syndrome.6 The aims of this study were to rst 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 nal aim was to identify what lessons may be drawn for future research and clinical management.

M ATERIALS AND M ETHODS

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 conrmed 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 identied, 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.7 Medical notes were reviewed to conrm the diagnosis and record surgical and nonsurgical interventions. All participants were asked to complete self-administered standardized questionnaires assessing psychosexual well117.e1

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intercourse. Higher scores reect better sexual function.

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not been sexually active in the past 4 weeks or longer.

ness, 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)8,9 The SF-12 is a brief evaluation of healthrelated quality of life, developed as a shorter alternative to the Short Form-36. The SF-12 contains 12 items that lead to 2 nal 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 reects better quality of life. Hospital Anxiety and Depression Scale (HADS)10 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,11 clinical, and research settings.12 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 nal score. A score of 7 or lower indicates normative functioning for each domain, with 8-10 reecting borderline status and 11 or higher suggesting signicant distress. Female Sexual Function Index (FSFI)13 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
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Multidimensional Sexuality Questionnaire (MSQ)14,15 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 nal 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 coefcients.

Comparison with reference data Quality of life (SF-12). In terms of physical health (PCS-12), the study sample yielded higher mean scores than the standardization sample (55.8 vs 50.9, respectively, P .001). For mental health (MCS-12), the study sample yielded lower mean scores (poorer mental health) compared with the standardization sample (42.0 vs 52.1, P .001).
HADS. The participants yielded higher mean scores for anxiety compared with the standardization sample (8.4 vs 4.3, P .002). No signicant difference was observed for depression (4.0 vs 4.4, P .64). FSFI. Thirty-six of 39 of the currently sexually active women completed the FSFI. The mean total FSFI score for the current sample was lower than the standardization population, indicating reduced sexual function (23.4 vs 30.5, P .001). Lower scores were evident in all of the subscales equally: desire, arousal, lubrication, orgasm, satisfaction, and pain.

R ESULTS
The median (range) age of the 56 participants was 21.7 years (18 52 years). Fortyeight of the participants (88%) were white; 38 (64%) were in a stable relationship; 49 (88%) were employed or in fulltime education. Fifty women (89%) reported having had at least 1 episode of sexual intercourse, 39 (70%) were currently sexually active, and 11 (20%) had

Predictor of outcomes MSQ. In the MSQ questionnaire, 36 subjects answered questions in relation to their current sexual partner, 13 in relation to their previous sexual partner, and 7 with regard to a potential sexual partner. Because statistical comparison with the reference data was not possible, mean scores are expressed as a percentage of the mean reference value and considered important if they deviated by more than 30%. Of the 12 subscales, scores were lower than reference for sexual esteem (50%) and sexual preoccupation (53%) and greater than reference for sexual depression (205%), sexual anxiety (172%), and fear of sexual relations (146%). Scores for sexual monitoring, internal and external sexual control, sexual consciousness, motivation, satisfaction, and assertiveness were within 30% of the reference value. Further exploration of the data was carried out to identify potential associations between patient characteristics and the measurements (Table). Characteristics studied were: age (above and below

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TABLE

Outcome of measurement of vaginal length and questionnaires grouped according to type of intervention for the vagina
Type of intervention for the vagina Variable n Age None 12 24.9 (6.1) 4.8 (2.6) 5.8 (2.1) 1.3 (1.2) Dilator only 36 23.5 (6.2) 5.1 (2.6) 9.5 (4.7) 5.1 (4.9) Surgery 8 32.3 (12.9) 7.4 (2.6) 9.0 (4.8) 4.4 (4.6) Standardization data Numbers in standardization data, n

................................................................................................................................................................................................................................................................................................................................................................................ a ................................................................................................................................................................................................................................................................................................................................................................................

Vaginal length (n 44) HADS anxiety HADS depression

................................................................................................................................................................................................................................................................................................................................................................................ b ................................................................................................................................................................................................................................................................................................................................................................................ b ................................................................................................................................................................................................................................................................................................................................................................................ a

6.14 (3.76) 3.68 (3.07) 5.68

1792 1792 257 257 257

MSQ sexual esteem MSQ sexual anxiety FSFI desire

................................................................................................................................................................................................................................................................................................................................................................................ b ................................................................................................................................................................................................................................................................................................................................................................................ a

11.2 (5.4) 5.2 (5.3) 13.7 (6.3)

5.2 (4.9) 7.4 (6.4) 3.5 (1.2) 3.6 (1.7)

8.9 (6.1)

13.93

10.7 (6.9)

12.1 (6.6) 3.9 (1.3) 4.8 (1.0) 5.0 (0.8) 5.5 (0.8)

MSQ sexual satisfaction FSFI arousal

................................................................................................................................................................................................................................................................................................................................................................................ a ................................................................................................................................................................................................................................................................................................................................................................................ a ................................................................................................................................................................................................................................................................................................................................................................................

11.2 (7.9)

12.53

4.9 (1.0) 5.2 (1.0) 4.9 (1.3) 5.1 (1.1) 5.6 (0.4)

6.90 (1.89)

131 130 130 130

16.80 (3.62) 12.70 (3.16) 12.80 (3.03)

FSFI lubrication FSFI orgasm PCS-12

................................................................................................................................................................................................................................................................................................................................................................................ a ................................................................................................................................................................................................................................................................................................................................................................................ a

4.2 (1.7)

5.3 (0.7)

18.60 (1.17)

130

3.32 (2.0) 4.0 (2.0)

FSFI satisfaction MCS-12

................................................................................................................................................................................................................................................................................................................................................................................ ................................................................................................................................................................................................................................................................................................................................................................................

56.5 (5.1)

55.6 (9.0)

56.1 (7.6)

50.9 (9.4) 52.1 (8.7)

1751 1751

45.9 (10.7)

40.0 (13.0)

39.9 (12.3)

................................................................................................................................................................................................................................................................................................................................................................................

Data shown as mean (SD). FSFI, Female Sexual Function Index; HADS, Hospital Anxiety and Depression Scale; MCS-12, mental health score using the SF-12; MSQ, Multidimensional Sexuality Questionnaire; PCS-12, physical health score using the SF-12.
a

Different from dilator-only group; b Different from no-treatment group. Note FSFI applies only to 36 who are sexually active. Normative data from standardized questionnaires has been added.

Liao. Sex and quality of life in Rokitansky syndrome. Am J Obstet Gynecol 2011.

median age of 22 years), current relationship status (in or not in a relationship), higher education (A-levels or university degree, yes or no), and employment status (employed or not employed). A Mann-Whitney U test was performed to examine group differences on HADS-anxiety scores, FSFI total score, and both domains of SF-12. There was a weak age effect identied on the SF12 mental health domain, with women above the age of 22 years having better scores (37.7 vs 45.0, P .05). Women who had had higher education had a signicantly higher mean FSFI (25 vs 21.3, P .01) and SF-12 PCS score (better reported physical health) (58.3 vs 52.6 P .01). Women in a current relationship scored better on the FSFI total score (25.2 vs 17.5, P .01).

including penetrative intercourse. It is likely these women increased their vaginal length by coitus alone. Thirty-six women had used dilators in the past (20 sexually active, 55%) and 8 (7 sexually active, 88%) had had vaginal surgery comprising a laparoscopic Vecchietti in 4, McIndoe-Reed, Williams bowel, and skin ap vaginoplasty each in 1 woman. No participant had surgery during the study period, and the range of time from surgery to participation in the study was from 5 to 16 years. Those who had had vaginal surgery were older than the nonsurgical subgroup presumably reecting a change in clinical practice. Women who had surgery or used vaginal dilation did not have better indicators of sexual wellness or sexual function than those who were untreated (Table).

Vaginal intervention Twelve women had had no vaginal surgery and had not used dilators, of whom 10 (83%) were currently sexually active

Vaginal length Vaginal length was measured in 44 women and the mean was compared with normal reference values previously

established by our unit.7 Overall mean (SD) vaginal length was 5.4 (2.7) cm, which was was signicantly shorter than the published mean vaginal length of 9.6 cm (1.5) (P .001).7 However, on further analysis, mean [SD] vaginal length was signicantly greater in women who had vaginal surgery compared with others (7.4 [2.6] vs 4.8 [2.6] cm for no treatment and 5.1[2.6] for dilation; P .001) and in fact fell within the normal range. Vaginal length in women who had used dilators alone was not different from those women who had not had vaginal intervention (4.9 [2.6] vs 4.8 [2.5] cm). Women who were currently sexually active had signicantly greater mean [SD] vaginal length compared with those who had previously been sexually active or had never been sexually active (6.3 [2.3] vs 3.2 [2.5] vs 3.6 [2.9], P .05) (Figure). There was a signicant positive correlation between vaginal length and the 117.e3

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FIGURE

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Our group has previously published data from young women with premature ovarian failure (POF) using similar questionnaires.16 Statistical comparison of the sexual satisfaction score of the MSQ does conrm that both the patients from this study and our patients with POF had reduced sexual satisfaction compared with the normative data. The values for both groups of patients was similar with a mean (SD) value for this study group of 9.4 (7.0) compared with 9.1 (6.3) for women with POF (P .1). Our sample comprised a high percentage of women in employment and women who have had higher education. As can be expected, these demographic factors appeared to offer a level of advantage in physical health, 1 of the 2 SF-12 domains. Despite this social advantage though, SF-12 scores also suggested diminished overall mental health. In addition, scores on the HADS further suggested raised anxiety. Women with Rokitansky syndrome are asymptomatic. Vagina creation invariably connects them to the diagnosis.17 This may partly account for the unexpected nding that women who were currently undergoing treatment to the vagina reported a higher level of anxiety than those who had not. A previous small but detailed qualitative study on 7 women with Rokitansky syndrome did identify both positive and negative psychological and psychosexual responses following a diagnosis or vaginal agenesis.18 The FSFI scores for the overall sample suggested compromised sexual function. Although sexual difculties should not come as a surprise, these difculties have not been reported before. A limited number of recent reports that had measured sexual function using the FSFI concluded, somewhat surprisingly, that women with the Rokitansky syndrome can achieve entirely normal sexual function following a variety of vaginal interventions.6,19,20 This would seem unlikely, given the physical and psychological challenges of the lifelong condition. The differences in the sample characteristics (if specied), the variations in follow-up periods, and the different research designs in the studies

Vaginal length measurements separated by sexual activity

White circles indicate no treatment, gray circles indicate dilation only, and black circles indicate vaginal surgery. Vaginal length is greater in sexually active women, regardless of treatment. The control group is to the normal data for vaginal length in women without the Rokitansky syndrome previously published by our group.7
Liao. Sex and quality of life in Rokitansky syndrome. Am J Obstet Gynecol 2011.

MSQ sexual satisfaction subscale (r 0.35; P .02), the FSFI parameters, vaginal lubrication score (r 0.38; P .02), and orgasm score (r 0.35, P .03). No signicant correlation was found between vaginal length and mean HADS and SF-12 scores.

C OMMENT
This study shows that Rokitansky syndrome, with its long-term implications for identity, sexuality, relationships, and parenthood, is associated with compromised emotional and sexual wellness. Although the study has identied new information relating to Rokitansky syndrome, a major drawback lies in its cross-sectional design, which does not 117.e4

permit interpretation of causal relationships. Furthermore, although the response rate was high and the series of 56 cases is acceptable for rare conditions like Rokitansky syndrome, the actual number did not lend itself to robust regression analyses that would enable us to identify key factors in emotional and sexual wellness with condence. In addition, the normative data used in this study are from a general population, and one would perhaps expect women with Rokitansky syndrome to score poorly, although this has not been demonstrated in previous studies. It would be useful in future studies to compare this with normative data from other gynecological conditions.

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have rendered it difcult to reach a conclusion with any level of condence. There was a positive relationship between vaginal length and MSQ sexual satisfaction scores as well as the FSFI orgasm and vaginal lubrication scores. Furthermore, longer vaginal length was associated with being sexually active rather than treatment to the vagina. Conversely, the vagina was shorter in women who had never been or had not recently been sexually active, conrming that dilation is needed to maintain patency in periods of coital inactivity. In terms of implications for interventions to the vagina, the mixed results from the small number of observational studies including this one, using a mixture of cross-sectional, retrospective, and prospective designs, point to the necessity for more authoritative work in future. Several operations have been reported,1 but the lack of consensus on criteria for treatment selection pinpoint a real need for comparative studies. A sufciently powered randomized controlled trial evaluating multiple outcomes in the immediate, medium, and long term would help to determine the relative benets and risks, as perceived by doctors and patients, of surgical and nonsurgical interventions to the vagina. It is doubtful whether any patient would consider being randomized to have an intestinal vaginoplasty with its signicant risks. Because the laparoscopic Vecchietti procedure is associated with low levels of surgical morbidity, it is potentially more feasible and ethical to carry out a randomized study of nonsurgical vaginal dilation and the Vecchietti operation. In terms of implications for psychological research, our ndings suggest that, rst of all, prospective longitudinal studies with quantitative and qualitative arms are required to clarify the multiple problems for women in different age groups. Although the challenges of living with the condition may only ever be partially resolved via clinical interventions, it is nevertheless important to develop a more thorough understanding of patient needs to design quality services that meet appropriate care standards.

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In the interim, our ndings also suggest that specic psychological interventions are required to tackle womens anxiety21,22 and sexual difculties.23 Although there is psychological input to some DSD centers, this is typically limited in scope, often without capacity to follow up patients, and the more substantial investment required for integrated evidence-based psychological treatments is currently absent in specialist medical centers. In the United Kingdom, psychological treatments are funded locally and offered by generic practitioners, most of whom would not have heard of the Rokitansky syndrome. Medical management, on the other hand, takes place in national centers of excellence that can be geographically distant from the patients locality. Congenital disorders are lifelong, and service models for disablement, whereby resource allocation takes formal account of social and psychological effects, may mirror patient needs better than specialist services tailored to acute diseases. Service improvement for the Rokitansky syndrome and similar conditions will remain an important topic for discussion between care providers, stakeholders, and patient forums. Above all, the results of this study emphasize a need to look harder at the challenges of living with the Rokitansky syndrome. Rather than competing for success stories to valorize a preferred vaginal treatment, an orientation that can lead clinicians to overlook (residual) patient distress, care providers may need to investigate multiple clinical needs more thoroughly. In particular, the role of psychological intervention as both a primary and adjuvant treatment needs clear evaluation. Without this approach, the literature will continue to be suffused with small disparate results arising from mixed methodologies and as such is no help to evidence-based practice. f
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