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GENERAL GYNECOLOGY

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- pleted 4 questionnaires assessing health-related quality of life, emo-

nal length was 5.4 cm and was greater in women currently sexually ac- tive. Vaginal length had a positive correlation with overall sexual satis- faction but was not related to overall quality of life.

CONCLUSION: Rokitansky syndrome has a negative impact on emo-

tional distress, and sexual function and attended for a vaginal tional and sexual wellness. Relationships between physical and psycho-

examination.

RESULTS: Participants reported better overall physical health and poorer overall mental health compared with normative data. Anxiety lev- els were higher, especially for women who had undergone vaginal treatment. Sexual wellness and function scores were poor. Mean vagi-

logical 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.

W omen with Rokitansky syndrome (Meyer-Rokitansky-Kuster-Hauser

quantify treatment success and, until re- cently, only clinical anecdotes existed for

Few individuals diagnosed with a dis- order of development, including Roki-

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

syndrome) have agenesis of the uterus sexual experience and function. 4

and vagina. Until now, the key focus of clinical management has been to in- crease vaginal size to permit penetrative sexual intercourse. Depending on pre- sentation 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

tansky syndrome, are happy to disclose was approved by the Committee on the

their diagnosis, even to people to whom they are closest. 5 Permanent loss of

Ethics of Human Research. All women with a confirmed diagnosis of Rokitan-

bodily integrity and fertility and the need sky syndrome who had been seen in our

for an artificially constructed vagina can

clinic within the previous year were in-

be surmised to have an impact on iden- vited to take part in the study. Length of

tity and self-evaluation. These challenges

follow-up under our clinic ranged from

From the Elizabeth Garrett Anderson UCL Institute of Women’s 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 Women’s 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

may compromise emotional well-being, 6 months to 5 years. Of the 93 women

relationship outcomes, and sexual func- tion. Given what is already known about

identified, 4 had moved overseas and 2 did not have contactable addresses. Of

the unrelenting emotional distress asso- the 87 eligible research participants, 56 ciated with infertility alone, the method- of 87 (64%) took part in the study.

ical identification of emotional and sex-

Each research participant attended for

ual difficulties is conspicuous by the a vaginal examination. Vaginal length

absence in the literature on Rokitansky syndrome. 6 The aims of this study were to first of

was measured as previously reported by this team by inserting a cotton bud into the vagina; the length in centimeters

all describe what can be expected in from the posterior fourchette to the

terms of overall health and well-being in

most proximal part of the blind ending

women with Rokitansky syndrome. The vagina was recorded. 7 Medical notes

second aim was to explore the relation- were reviewed to confirm the diagnosis

ships between vaginal length and psy- chosexual wellness and function. The fi- nal aim was to identify what lessons may be drawn for future research and clinical

management.

and record surgical and nonsurgical interventions. All participants were asked to com- plete self-administered standardized que- stionnaires assessing psychosexual well-

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ness, emotional distress, and health-re- lated quality of life. In addition, sexual function was assessed in sexually active participants by self-administered stan- dardized questionnaires described in the following text. All questionnaires chosen for this study have been previously de- veloped as research tools using a general

intercourse. Higher scores reflect better sexual function.

Multidimensional Sexuality Questionnaire (MSQ) 14,15

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

Comparison with reference data

Quality of life (SF-12). In terms of physi-

The MSQ was developed to assess psy- cal health (PCS-12), the study sample

chological tendencies associated with sexual relationships. Unlike many sexual

yielded higher mean scores than the stan- dardization sample (55.8 vs 50.9, respec- tively, P .001). For mental health (MCS-12), the study sample yielded lower mean scores (poorer mental health) compared with the standardiza- tion sample (42.0 vs 52.1, P .001).

HADS. The participants yielded higher mean scoresfor anxiety comparedwith the standardization sample (8.4 vs 4.3, P .002). No significant difference was ob- served for depression (4.0 vs 4.4, P .64).

ual depression, external sexual control, sexual monitoring, fear of sexual rela- FSFI. Thirty-six of 39 of the currently

population, which then allows us to function assessments, completion of the

compare our clinical data with norma- tive 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 health- related quality of life, developed as a shorter alternative to the Short Form-36. The SF-12 contains 12 items that lead to

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 com- prises 12 subscales, each with 5 items (60 items) assessing: sexual esteem, sexual preoccupation, internal sexual control, sexual consciousness, sexual motivation, sexual anxiety, sexual assertiveness, sex-

2 final summary scores: physical health tionships, and sexual satisfaction. Indi- (PCS-12) and mental health (MCS-12). viduals rate their level of agreement with Scoring is based on the description by the each item on a 5 point scale. The sum of

original authors and a higher physical each item in each subscale is than added

(PCS-12) or mental (MCS-12) health score reflects better quality of life.

up to give a final subscale score (maxi-

sexually active women completed the FSFI. The mean total FSFI score for the current sample was lower than the stan- dardization population, indicating re- duced sexual function (23.4 vs 30.5, P

mum score of 20). A higher score means .001). Lower scores were evident in all of

Hospital Anxiety and Depression Scale (HADS) 10

a poorer outcome. The MSQ is useful to allow internal comparisons, but statisti- cal comparisons cannot be performed

The HADS is a 14 item brief screening because SDs for the normative data are

the subscales equally: desire, arousal, lu- brication, orgasm, satisfaction, and pain.

Predictor of outcomes

assessment of anxiety and depression, markers of emotional distress, in non- psychiatric hospital patients. It was de-

not available.

Statistical analysis

veloped in the United Kingdom, and All statistical analysis was performed us- since its introduction in 1983, it has been ing SPSS version 16.0 (SPSS Inc, Chi-

validated and widely used in nonclini- cal, 11 clinical, and research settings. 12 Of

cago, IL). Questionnaires were assessed using published standardized scoring

the 14 items, 7 items form the anxiety systems. Comparison of mean scores

subscale and a further 7 items form the from questionnaires were analyzed using

depression subscale. Patients select their

1 way Student t test compared with ref-

response to each item on a 4 point scale. erence data for 2 groups and analysis of

Each response is scored from 0 to 3, and variance for more than 2 groups. Corre-

the sum of the scores of all the items in each subscale gives a final score. A score of 7 or lower indicates normative func- tioning for each domain, with 8-10 re- flecting borderline status and 11 or higher suggesting significant distress.

lations between variables were sought using Spearman correlation coefficients.

R ESULTS

The median (range) age of the 56 partici- pantswas 21.7 years (18 –52 years). Forty-

MSQ. In the MSQ questionnaire, 36 subjects answered questions in relation to their current sexual partner, 13 in re- lation 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 percent- age of the mean reference value and con- sidered important if they deviated by more than 30%. Of the 12 subscales, scores were lower than reference for sex- ual esteem (50%) and sexual preoccupa- tion (53%) and greater than reference for sexual depression (205%), sexual anxiety (172%), and fear of sexual rela- tions (146%). Scores for sexual monitor- ing, internal and external sexual control, sexual consciousness, motivation, satis-

Female Sexual Function Index (FSFI) 13

Sexually active participants completed the FSFI. The 19 questions assess 6 do- mains of female sexual function: sexual desire, arousal, lubrication, orgasm, sex- ual satisfaction, and pain during sexual

eight of the participants (88%) were faction, and assertiveness were within

white; 38 (64%) were in a stable relation- ship; 49 (88%) were employed or in full- time education. Fifty women (89%) re- ported having had at least 1 episode of sexual intercourse, 39 (70%) were cur-

30% of the reference value. Further exploration of the data was carried out to identify potential associa- tions between patient characteristics and the measurements (Table). Characteris-

rently sexually active, and 11 (20%) had tics studied were: age (above and below

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General Gynecology Research

 

TABLE

Outcome of measurement of vaginal length and questionnaires grouped according to type of intervention for the vagina

 
 

Type of intervention for the vagina

 

Numbers in standardization

 

Variable

None

Dilator only

Surgery

Standardization data

data, n

 

12

36

8

 

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

 

n Age

24.9 (6.1)

23.5 (6.2)

32.3 (12.9) a

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

 

Vaginal length (n 44)

4.8 (2.6)

5.1 (2.6)

7.4 (2.6)

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

 

HADS anxiety

5.8 (2.1)

9.5 (4.7) b

9.0 (4.8)

6.14 (3.76)

1792

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

 

HADS depression

1.3 (1.2)

5.1 (4.9) b

4.4 (4.6)

3.68 (3.07)

1792

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

 

MSQ sexual esteem

11.2 (5.4) a

5.2 (4.9)

8.9 (6.1)

13.93

257

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

 

MSQ sexual anxiety

5.2 (5.3)

10.7 (6.9) b

12.1 (6.6)

5.68

257

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

 

MSQ sexual satisfaction

13.7 (6.3) a

7.4 (6.4)

11.2 (7.9)

12.53

257

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

 

FSFI desire

4.9 (1.0) a

3.5 (1.2)

3.9 (1.3)

6.90 (1.89)

131

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

 

FSFI arousal

5.2 (1.0) a

3.6 (1.7)

4.8 (1.0)

16.80 (3.62)

130

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

 

FSFI lubrication

4.9 (1.3)

4.2 (1.7)

5.3 (0.7)

18.60 (1.17)

130

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

 
 

5.1 (1.1) a

3.32 (2.0)

5.0 (0.8)

12.70 (3.16)

130

 

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

 

FSFI orgasm FSFI satisfaction

5.6 (0.4) a

4.0 (2.0)

5.5 (0.8)

12.80 (3.03)

130

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

 

PCS-12

50.9 (9.4)

1751

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

 

MCS-12

56.5 (5.1) 45.9 (10.7)

55.6 (9.0) 40.0 (13.0)

56.1 (7.6) 39.9 (12.3)

52.1 (8.7)

1751

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

 

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 rela-

tionship status (in or not in a relation- ship), higher education (A-levels or university degree, yes or no), and em- ployment status (employed or not em- ployed). 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 identified 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 significantly 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 rela- tionship scored better on the FSFI total score (25.2 vs 17.5, P .01).

Vaginal intervention

Twelve women had had no vaginal sur- gery and had not used dilators, of whom 10 (83%) were currently sexually active

including penetrative intercourse. It is likely these women increased their vagi- nal 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, William’s bowel, and skin flap 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 non- surgical subgroup presumably reflecting 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 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 significantly 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 significantly greater in women who had vaginal sur- gery 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 inter- vention (4.9 [2.6] vs 4.8 [2.5] cm). Women who were currently sexually ac- tive had significantly 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 significant positive corre- lation between vaginal length and the

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FIGURE

Vaginal length measurements separated by sexual activity

Our group has previously published data from young women with premature ovarianfailure (POF) using similar ques-

Research General Gynecology www.AJOG.org FIGURE Vaginal length measurements separated by sexual activity Our group has previously

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, vag- inal lubrication score (r 0.38; P .02), and orgasm score (r 0.35, P .03). No

permit interpretation of causal relation-

tionnaires. 16 Statistical comparison of the sexual satisfaction score of the MSQ does confirm 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 percent- age of women in employment and women who have had higher education. As can be expected, these demographic factors appeared to offer a level of advan- tage in physical health, 1 of the 2 SF-12 domains. Despite this social advantage though, SF-12 scores also suggested di-

minished overall mental health. In addi- tion, scores on the HADS further sug- gested raised anxiety. Women with Rokitansky syndrome are asymptomatic. Vagina creation in-

variably connects them to the diagno- sis. 17 This may partly account for the un- expected finding 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 re- sponses following a diagnosis or vagi- nal agenesis. 18 The FSFI scores for the overall sample

ships. Furthermore, although the re- suggested compromised sexual function.

sponse rate was high and the series of 56

cases is acceptable for rare

conditions

Although sexual difficulties should not come as a surprise, these difficulties have

significant correlation was found be- like Rokitansky syndrome, the actual not been reported before.

tween vaginal length and mean HADS and SF-12 scores.

  • C OMMENT

This study shows that Rokitansky syn- drome, with its long-term implications

number did not lend itself to robust re- gression analyses that would enable us to identify key factors in emotional and

sexual wellness with confidence. In addition, the normative data used in this study are from a general popula-

A limited number of recent reports that had measured sexual function using the FSFI concluded, somewhat surpris- ingly, that women with the Rokitansky syndrome can achieve entirely normal sexual function following a variety of

for identity, sexuality, relationships, and tion, and one would perhaps expect vaginal interventions. 6,19,20 This would

parenthood, is associated with compro- mised emotional and sexual wellness. Although the study has identified new information relating to Rokitansky syn- drome, a major drawback lies in its cross-sectional design, which does not

women with Rokitansky syndrome to score poorly, although this has not been demonstrated in previous studies. It would be useful in future studies to com- pare this with normative data from other gynecological conditions.

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seem unlikely, given the physical and psychological challenges of the lifelong condition. The differences in the sample characteristics (if specified), the varia- tions in follow-up periods, and the dif- ferent research designs in the studies

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have rendered it difficult to reach a con- clusion with any level of confidence.

There was a positive relationship be- tween vaginal length and MSQ sexual satisfaction scores as well as the FSFI or- gasm 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, confirming that dilation is needed to maintain pa- tency in periods of coital inactivity. In terms of implications for interven- tions to the vagina, the mixed results from the small number of observational studies including this one, using a mix- ture of cross-sectional, retrospective, and prospective designs, point to the ne- cessity for more authoritative work in fu- ture. Several operations have been re- ported, 1 but the lack of consensus on criteria for treatment selection pinpoint a real need for comparative studies. A sufficiently powered randomized controlled trial evaluating multiple out- comes in the immediate, medium, and long term would help to determine the relative benefits 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 signifi- cant risks. Because the laparoscopic Vec- chietti procedure is associated with low levels of surgical morbidity, it is poten- tially more feasible and ethical to carry out a randomized study of nonsurgical vaginal dilation and the Vecchietti operation. In terms of implications for psycho- logical research, our findings suggest that, first 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 par- tially 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.

In the interim, our findings also sug- gest that specific psychological interven- tions are required to tackle women’s anxiety 21,22 and sexual difficulties. 23 Al- though there is psychological input to some DSD centers, this is typically lim- ited in scope, often without capacity to follow up patients, and the more sub- stantial investment required for inte- grated evidence-based psychological tre- atments is currently absent in specialist medical centers. In the United Kingdom, psychological treatments are funded locally and of- fered by generic practitioners, most of whom would not have heard of the Roki- tansky syndrome. Medical management, on the other hand, takes place in national centers of excellence that can be geo- graphically distant from the patient’s 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 special- ist services tailored to acute diseases. Ser- vice improvement for the Rokitansky syndrome and similar conditions will re- main an important topic for discussion between care providers, stakeholders, and patient forums. Above all, the results of this study em- phasize a need to look harder at the chal- lenges 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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