Key words
polycystic ovary syndrome - sexual quality of life - feelings of inadequacy in social
and sexual situations - depression - hirsutism
Schlüsselwörter
polyzystisches Ovarsyndrom - sexuelle Lebensqualität - Unsicherheit in sexuellen Situationen
- Depression - Hirsutismus
Introduction
Sexuality has a high impact on the overall well-being [1]. Sexual quality of life comprises all aspects that result in a satisfying sexuality.
That means sexual quality of life is more than the mere absence of an illness or a
disorder that might impair sexual functioning. It also involves the ability to fall
in love, to initiate and maintain a sexual and romantic relationship and to feel certain
about oneʼs own sexuality [2]. A sexual disorder can be an indicator for an impaired sexual quality of life but
sexual well-being should be assessed in more detail. Moreover, overall physical functioning,
partnership, and the self-worth have been identified to influence sexual quality of
life [1], [3]. Additionally, the attitude towards the own body, more specific the genitals [4], [5], [6] and the body image [7], have an effect on our sexuality.
The most common endocrinopathy amongst women at the reproductive stage [8], [9], [10], [11], the polycystic ovary syndrome (PCOS) with a prevalence rate of about 5% [12], [13] or even up to 17.8% in a community sample [14], is associated with an impaired general quality of life and psychological well-being
in affected women [15], [16], [17], [18], [19], [20], [21], [22]. However, not much is known about the sexual quality of life of women with PCOS.
Most research focuses on sexual function whereby most studies report only global scores
(e.g. [23], [24], [25], [26], [27], [28]) and specific sexual dysfunctions are only sporadically reported [29], [30], [31], [32], [33]. So far it appears that sexual satisfaction and sexual self-worth are impaired [16], [23], [24], [29], [30], [34], [35], [36], [37]. More research on sexual quality of life is necessary because PCOS affects a high
number of women and is associated with a number of symptoms that each by itself can
mediate sexuality.
The syndrome is currently defined as a combination of hyperandrogenism (hirsutism
and/or hyperandrogenemia) and ovarian dysfunction (oligo-anovulation and/or polycystic
ovaries) (NIH criteria [38]; Rotterdam criteria [39]). Affected women face multiple problems, for example menstrual irregularities or
amenorrhea, hirsutism, acne, alopecia and obesity while there is a wide variety in
the clinical presentation [40].
Obesity has been documented to have a negative effect on sexuality [41], [42], but in women with PCOS the results are mixed [23], [26], [41], [42].
Hirsutism has been described to have aversive effects on sexuality by causing body dissatisfaction
and interfering with the womenʼs feminine self-perception [16], [25], [29], [31], [37], [43], [44], [45], [46], [47]. Infertility is a burden that can lead to marital problems and sexual dysfunction [48], [49], [50]. Barnard et al. found that infertility was the third most troubling symptom of PCOS
after weight concerns and menstrual problems [51]. A negative association between the wish for a child and sexual well-being in women
with PCOS would thus seem plausible.
Literature on self-esteem and sexuality seems to support a positive relationship between these two variables
[3]. Low self-esteem can also adversely affect a personʼs body image and in this way
negatively influence sexuality [3], [52], [53]. Systematic studies on self-esteem in women with PCOS are scarce [20], [30], [37], [44], [54]. Depression or more generally mood is a known mediator in female sexual function [55], [56]. Depression has often been reported to be elevated in women with PCOS [17], [24], [36], [51], [57], [58], [59], [60], a negative influence on sexuality in PCOS patients could thus be expected.
Aims
This study is designed to investigate sexual quality of life in women with polycystic
ovary syndrome (PCOS). First, sexual difficulties and perceived distress will be described
at the level of individual sexual problems as outlined in the DSM-IV-TR of the American
Psychiatric Association [61]. The second aim is to explore total sexual function scores, feelings of inadequacy
in social and sexual situations as well as to take a look at general self-esteem and
depression. Third, the relationships of these variables will be examined linking them
to putative mediators such as body mass index, the wish for a child and hirsutism.
The study will close with an inquiry about what participants see as the source of
their sexual problems.
Materials and Methods
Procedure
This cross-sectional study was conducted within the scope of the research project
“Androgens, Quality of Life and Femininity in People with Complete Androgen Insensitivity
(CAIS), Mayer-Rokitansky-Küster-Hauser Syndrome (MRKHS) and Polycystic Ovary Syndrome
(PCOS)” at the University Medical Center Hamburg-Eppendorf, Institute for Sex Research
and Forensic Psychiatry. Recruitment of participants was accomplished by contacting
support groups and professionals in the field of gynaecology and endocrinology and
via an internet announcement.
An extensive paper & pencil questionnaire was developed which included standardised
as well as self-developed scales and open questions. The study employed scales and
questions also used in a previously conducted study on intersex conditions – University
Medical Center Hamburg-Eppendorf, Institute for Sex Research and Forensic Psychiatry
[62], [63], [64]. Participants filled out the questionnaire at home or at the research centre. A
compensation of 20 EUR was granted. The data were collected between 03/2010 and 07/2011.
The study was approved of by the ethics committee.
Participants
Participants had to be of full legal age (≥ 18 years) and data were included only
if informed consent had been given. Diagnostic information was accepted with a differentiation
between two levels of confirmation: Participants had to confirm that they had the
polycystic ovary syndrome and that they had been diagnosed by a medical doctor. This
was considered “second degree confirmation”. If consent was given, the attending medical
doctors were contacted and asked to verify the diagnosis and send in medical records.
Diagnoses attested directly by doctors were considered “first degree confirmation”.
Outcome measures
Sexual problems and dysfunctions
A list of sexual problems was presented. It was developed based on DSM-IV-TR diagnoses
[61], but extended to include further problems [62]. First, participants had to indicate whether the respective situation was true for
them (“yes” or “no”) and then, whether this problem caused them distress (“yes” or
“no”). A mean number of sexual problems was calculated (maximum: 12).
Comparison data were available from a previous study by the authors [65]. Sexual problems that required previous sexual experience were only analysed in
experienced individuals.
Standardised scales
All scores were calculated according to the manuals. For all scales satisfactory to
excellent psychometric properties are reported [65], [66], [67], [68], [69].
Female Sexual Function Index (FSFI)
The Female Sexual Function Index [66], [70] is a self-report scale used to assess sexual function in women during the past four
weeks. Full-scale scores range from 2.0 to 36.0, with high numbers indicating better
sexual function. Comparison data were available from the publication by Rosen [66]. Full-scale scores have been classified as “poor” when ≤ 23, as “good” or “satisfactory”
when within the range of 24 – 29, and as “very good” when ≥ 30 [71], [72].
Feelings of Inadequacy in Social and Sexual Situations (FUSS)
The questionnaire by Fahrner assesses feelings of inadequacy during interactions with
a potential or an actual romantic partner [73]. It contains two subscales: “social” and “sexual”. Each subscale consists of 11
statements. Participants indicate their level of agreement (0 = “not at all true”
and 5 = “absolutely true”). “I feel anxious when talking to an attractive man/woman”
is an example of a social situation that might trigger feelings of inadequacy (FUSS
social), “I donʼt know how to tell a man/woman when I would like to have sex with
him/her” refers to insecurity in the sexual domain (FUSS sexual). Comparison data
from a healthy control group were available from the publication by Fahrner [73].
Rosenberg Self-Esteem Scale (RSE)
The Rosenberg Self-Esteem Scale [74] is measure for the assessment of global self-worth [67], [75], [76]. The scale consists of 10 statements scaled 1 (“not true at all”) to 4 (“absolutely
true”). A high RSE score (max. 40) represents high self-confidence. The current study
employed the version by von Collani and Herzberg [68]. Comparison data from a non-clinical sample were available from a publication by
Martín-Albo et al. [77].
Brief Symptom Inventory (BSI)
The Brief Symptom Inventory is a questionnaire on psychological distress by Derogatis
and Melisaratos [69], [78]. It is divided into 9 subscales. In this study only the depression subscale was
employed. Original scores are transformed into t-scores according to the manualʼs
norm charts. T-values ≥ 63 are classified as clinically relevant [69].
Ferriman Gallwey Score (FG)
Hirsutism was assessed using the modified Ferriman-Gallwey method [79], [80], [81] including nine body parts. FG-Scores ≥ 6 were considered significant hirsutism [12], [82].
Wish for a child
The intensity of the participantsʼ current wish for a child was assessed using a single
question: “How much would you currently like to have a child?” The answer was measured
on a Likert scale of 1 “not” to 5 “very much”.
Open question on alleged cause(s) of sexual problems
The list of Sexual Problems and Dysfunctions was supplemented by an open question:
“If you have any of the sexual problems mentioned above, what do you think is/are
the reason(s) for it?”
Statistical methods
All calculations were conducted using the SPSS software package PASW Statistics 18.0.0.
Categorical data were compared using Pearsonʼs χ2, when expected frequencies were not adequate Fisherʼs exact probability test was
used instead.
Differences between the PCOS group and comparison samples [66], [73], [77] were analysed using t-tests (check [Table 2]).
Continuous data were categorised in order to find out how many individuals showed
critical scores. For both FUSS scales and the RSE scale each individualʼs score was
z-transformed. Scores above + 1.64 (FUSS social, FUSS sexual) or below − 1.64 (RSE)
were defined as “critical”, for in the general population only 5% of the people would
be expected to show scores this extreme. For the FSFI and the BSI depression scale
categorisations were already available (see above).
Pearsonʼs correlations were employed to identify relationships between variables.
For better comparability between measures effect sizes were calculated for Mann–Whitney
U and t-tests and expressed as correlation coefficient r, whereby r ≥ 0.10 stands
for a small, r ≥ 0.30 for a medium and r ≥ 0.50 for a large effect [83].
Qualitative data were analysed using Mayringʼs qualitative content analysis method
[84]. Numbers and ratios of participants who mentioned a derived topic are given. Ratios
refer to the total number of people who gave an answer to the question.
Results
Participants
Eleven questionnaires had to be discarded at the outset (no informed consent, unclear
or missing diagnosis). Of the remaining 55 participants, another eleven were excluded
(currently pregnant, recently delivered a baby). A total of 44 data sets could finally
be included in the study.
The diagnosis was confirmed by a medical doctorʼs statement or medical records (“first
degree confirmation”) for 27 (61.4%) participants. For the rest 17 (38.6%) “second
degree confirmation” was available. 21 (47.7%) women were informed about the study
by a fertility clinic.
Sample characteristics
The median age of the participants was 28.5 years (Q25 = 27.0, Q75 = 30.8). The PCOS group showed the following median level of education of 4.0 (Q25 = 3.0, Q75 = 6.0). A value of 4 corresponds to German “Abitur” which is equivalent to 12 – 13
years of schooling. 84.1% (n = 37) reported being in a relationship whereby the partnerships
were exclusively heterosexual. The sampleʼs median body mass index (BMI) was 25.8
(Q25 = 21.2, Q75 = 32.6). 21 (47.7%) women had a BMI below 25, eight (18.2%) participants were overweight
(BMI ≥ 25 to < 30) and 15 (43.1%) were obese (BMI ≥ 30).
The participantsʼ current wish for a child was Md = 5.0 (Q25 = 3.0, Q75 = 5.0) which is the maximum possible value and corresponds to a very strong wish
for a child.
Hirsutism as assessed by the modified Ferriman-Gallwey method yielded a median score
of 7.5 (Q25 = 4.0, Q75 = 13.75), with n = 27 (61.4%) showing relevant hirsutism as defined by a FG-score
≥ 6 points [12], [82].
Descriptive data – PCOS symptoms and sexual experience
For information on menstruation, acne, greasy hair (“seborrhea”) and hair loss (“alopecia”)
check [Table 1].
Table 1 Descriptive data – PCOS symptoms and sexual experience.
|
Variables
|
PCOS
n = 44
|
|
1 Percentages add up to 100%
2 Item scale: 1 (“very dissatisfied”) – 5 (“very satisfied”)
|
|
n (%)1
|
|
Menstruation
|
|
|
|
14 (31.8)
|
|
|
27 (61.4)
|
|
|
3 (6.8)
|
|
Acne
|
|
|
|
17 (38.6)
|
|
|
25 (56.8)
|
|
|
2 (4.5)
|
|
Greasy hair
|
|
|
|
24 (54.5)
|
|
|
19 (43.2)
|
|
|
1 (2.3)
|
|
Hair loss
|
|
|
|
7 (15.9)
|
|
|
33 (75.0)
|
|
|
4 (9.1)
|
|
Intercourse experience
|
|
|
|
43 (97.7)
|
|
|
1 (2.3)
|
|
|
–
|
|
Masturbation experience
|
|
|
|
38 (86.4)
|
|
|
6 (13.6)
|
|
|
–
|
|
Orgasm experience
|
|
|
|
41 (93.2)
|
|
|
–
|
|
|
3 (6.8)
|
|
Mdn (Q25 – Q75)
Range
|
|
Age at first intercourse (yrs.)
|
17.5 (16.0 – 20.0)
13.0 – 30.0
|
|
|
n = 2 (4.5%)
|
|
Age at first masturbation (yrs.)
|
14.0 (13.0 – 16.5)
5.0 – 30.0
|
|
|
n = 7 (15.9%)
|
|
Satisfaction with sex life2
|
3.0 (2.0 – 4.0)
1.0 – 5.0
|
|
|
n = 1 (2.3%)
|
43 women (97.7%) indicated having had sexual intercourse at least once in a lifetime,
38 women (86.4%) reported having masturbated in the past. 41 of the women (93.2%)
reported orgasm experience. Median age at first intercourse was 17.5 years (Q25 = 16.0, Q75 = 20.0), median age at first masturbation was 14.0 years (Q25 = 13.0, Q75 = 16.5). Satisfaction with sex life was a median of 3.0 (Q25 = 2.0, Q75 = 4.0) which stands for “moderately satisfied”, the item scale ranged from 1 (“very
dissatisfied”) to 5 (“very satisfied”). Please check [Table 1].
Main Results
Sexual problems and dysfunctions
No differences were observed between PCOS and a non-clinical convenience sample (data
were collected in a previous study, see [65]) regarding sexual problem rates. For an overview of sexual problem rates and distress
see [Fig. 1].
Fig. 1 Sexual problems and dysfunctions: problem rates and distress.
The PCOS group and the control sample did not differ significantly in terms of the
number of sexual problems (Mann–Whitney U = 2479.5, p = 0.673, r = − 0.03; PCOS: Md = 2.0,
Q25–Q75 = 0.00 – 4.00, missing n = 5; non-clinical controls: Md = 3.0, Q25–Q75 = 1.00 – 4.00, missing n = 12).
Standardised scales
Group comparisons
A difference between women with PCOS and controls was revealed concerning total sexual
function scores (FSFI). The PCOS sample showed significantly lower values (t[40] =
− 3.59, p ≤ 0.001, r = 0.49). The comparison of feelings of inadequacy in social situations
(FUSS social) also yielded a significant difference (t[43] = 1.80, p = 0.015, r = 0.36)
indicating stronger insecurity in women with PCOS. For feelings of inadequacy in sexual
situations a clear difference emerged (t[43] = 3.62, p ≤ 0.001, r = 0.48) again showing
higher levels of discomfort in women with PCOS. Self-esteem ratings (RSE) were comparable
to controls (t[40] = − 0.25, p = 0.805, r = 0.04). The mean depression score (BSI
t-score: Mean [SD] = 62.0 [11.71]) almost reached the cut-off value for relevant clinical
depression (t-score ≥ 63). Please check [Table 2].
Table 2 Psychosexual variables, self-esteem and depression in PCOS: group comparisons.
|
PCOS
n = 44
|
Comparison samples
|
|
PCOS vs. controls
|
|
Mean (SD)
|
Mean (SD)
|
|
t-tests
|
|
1 ns “not significant”, * significant at α-level of 5%, ** significant at α-level of
1%, *** significant at α-level of 0.1%
2 Full scale scores are “poor” when ≤ 23, as “good” or “satisfactory” when within the
range of 24 – 29, and as “very good” when ≥ 30 [61], [62].
3 High scores indicate high levels of insecurity.
4 Items scaled: 1 – 4, high scores indicate high self-esteem
5 t-scores standardization: M = 50, SD = 10; in the BSI t-scores ≥ 63 are seen as clinically
relevant, high scores indicate high levels depression [59]
|
|
Female Sexual Function Index (FSFI)
|
|
Full-scale score 2
|
27.5 (5.33)
|
30.5 (5.29)
|
Rosen et al. [66]
|
***
|
t(40) = − 3.59, p ≤ 0.001, r = 0.49
|
|
|
n = 3
|
|
|
|
|
Feelings of Inadequacy in Social and Sexual Situations (FUSS) 3
|
|
Social insecurity – Scale 1
|
14.4 (11.92)
|
9.82 (7.35)
|
Fahrner et al. [73]
|
*
|
t(43) = 2.54, p = 0.015, r = 0.36
|
|
|
–
|
|
|
|
|
Sexual insecurity – Scale 2
|
17.7 (10.71)
|
11.82 (7.79)
|
Fahrner et al. [73]
|
***
|
t(43) = 3.62, p ≤ 0.001, r = 0.48
|
|
|
–
|
|
|
|
|
Rosenberg Self-Esteem Scale (RSE)
|
|
Total Score 4
|
30.9 (5.73)
|
31.1 (4.55)
|
Martín-Albo et al. [77]
|
ns
|
t(40) = − 0.25, p = 0.805, r = 0.04
|
|
|
n = 3
|
|
|
|
|
Brief Symptom Inventory (BSI) Depression Scale
|
|
Mean t-score 5
|
62.0 (11.71)
|
–
|
Franke [69]
|
|
|
|
–
|
|
|
|
Categorisations
With respect to the FSFI eight women (19.5%) of the PCOS sample were categorised as
having “poor” sexual function. As far as feelings of inadequacy in social situations
(FUSS social) were concerned n = 11 (25.0%) showed “critical” scores. Results are
five times higher than expected in the general population. With regard to feelings
of inadequacy in sexual situations (FUSS sexual) the score was “critical” in 8 (18.2%)
individuals. This is more than three times the expected rate. Only one person (2.4%)
was classified as having critically low self-esteem. The depression scale identified
an extraordinarily high number of participants with a clinical depression: n = 24
(54.4%). Please check [Table 3].
Table 3 Psychosexual variables, self-esteem and depression in PCOS: Critical cases
|
|
|
PCOS
|
|
|
|
n = 44
|
|
Score
|
Category
|
n (%)
|
|
1 Full scale scores are “poor” when ≤ 23, as “good” or “satisfactory” when within
the range of 24 – 29, and as “very good” when ≥ 30 [71], [72].
2 High scores indicate high levels of anxiety, z-scores above z = + 1.64 (FUSS social,
FUSS sexual) were defined as “critical”, in the general population only 5% of the
people would be expected to show scores above this cut-off value.
3 High scores indicate high levels of self-esteem, scores below − 1.64 (RSE) were
defined as “critical”, for in the general population only 5% of the people would be
expected to show scores below this cut-off value.
4 High scores indicate high levels of depression BSI t-scores ≥ 63 are seen as clinically
relevant [69].
|
|
Female Sexual Function Index (FSFI)1
|
|
Full-scale score
|
≤ 23
|
“poor”
|
8 (19.5)
|
|
24 – 29
|
“satisfactory”
|
15 (36.6)
|
|
≥ 30
|
“good”
|
18 (43.9)
|
|
missing
|
|
n = 3
|
|
Feelings of Inadequacy in Social and Sexual Situations (FUSS)2
|
|
Social insecurity – Scale 1
|
≤ 1.64
|
“average”
|
33 (75.0)
|
|
> 1.64
|
“critical”
|
11 (25.0)
|
|
missing
|
|
–
|
|
Sexual insecurity – Scale 2
|
≤ 1.64
|
“average”
|
36 (81.8)
|
|
> 1.64
|
“critical”
|
8 (18.2)
|
|
missing
|
|
–
|
|
Rosenberg Self-Esteem Scale (RSE)3
|
|
|
|
|
Total Score
|
< −1.64
|
“critical”
|
1 (2.4)
|
|
≥ −1.64
|
“average”
|
40 (97.6)
|
|
missing
|
|
n = 3
|
|
Brief Symptom Inventory (BSI)4 Depression Scale
|
|
Mean t-score
|
< 63
|
“average”
|
20 (45.5)
|
|
≥ 63
|
“critical”
|
24 (54.5)
|
|
missing
|
|
–
|
Correlation matrix – standardised measures
Sexual function showed negative correlations with feelings of inadequacy in social
and even more so in sexual situations (FSFI & FUSS social: r = − 0.37; FSFI & FUSS
sexual: r = − 0.54), whereas the two FUSS scales are highly interrelated (FUSS social
& FUSS sexual: r = − 0.75). Sexual function showed a negligible association with depression
(FSFI & BSI depression: r = 0.01), but depression was considerably correlated with
apprehension in social and sexual situations (BSI depression & FUSS social: r = 0.40;
BSI depression & FUSS sexual: r = 0.51) and showed a strong correlation with self-esteem
(BSI depression & RSE: r = − 0.63). Hirsutism showed a relevant association with FUSS
social (FG & FUSS social: r = 0.31). Body mass index showed a positive medium-size
correlation with sexual function (BMI & FSFI: r = 0.32). Age did not reach a medium
size correlation with any of the scales, neither did the wish for a child. Please
check [Table 4].
Table 4 Correlations.
|
FSFI
|
FUSS social
|
FUSS sexual
|
RSE
|
BSI depression
|
|
FSFI
|
–
|
− 0.367
|
− 0.536
|
0.187
|
0.007
|
|
FUSS social
|
|
–
|
0.753
|
− 0.393
|
0.398
|
|
FUSS sexual
|
|
|
–
|
− 0.578
|
0.510
|
|
RSE
|
|
|
|
–
|
− 0.626
|
|
BSI depression
|
|
|
|
|
–
|
|
Age
|
0.038
|
− 0.086
|
0.074
|
− 0.084
|
− 0.139
|
|
Body Mass Index
|
0.315
|
− 0.038
|
− 0.110
|
− 0.212
|
0.188
|
|
Wish for a child
|
0.222
|
− 0.231
|
− 0.184
|
− 0.058
|
0.177
|
|
Ferriman-Gallwey Score
|
− 0.177
|
0.308
|
0.288
|
− 0.166
|
0.214
|
Content analysis
Of the total number of 44 participants, 24 (54.5%) commented on the question “If you
have any of the sexual problems mentioned above, what do you think is/are the reason(s)
for it?”. Important themes that arose were related to psychological difficulties,
the sexual experience, somatic conditions and partnership. Psychological difficulties such as “Low self-esteem” and “Feeling of being unattractive” were seen in 2 of 24
(8.3%) women, respectively. “General emotional problems” were reported by 3 women
(12.5%). The section of Sexual experience yielded the “fear not to get pregnant” as a reason for sexual problems and “insufficient
lubrication”: these problems were each reported by 2 of 24 (8.3%) women. Somatic conditions included “hormones” as reasons for sexual dysfunctions in 5 (20.8%) participants.
Issues related to “partner and relationship characteristics” were given as reasons
by 6 of 24 (25.0%) women in the section of Partnership. Please check [Table 5].
Table 5 Subjective reasons for sexual problems.
|
Category
|
Subcategory
|
n (%)
|
Representative quote
|
|
|
PCOS
n = 24*
|
|
|
* The n refers to the number of participants who gave an answer to the open question
at all. The number serves as the base rate for the percentages given. Each participant
could touch on multiple themes in the answer given.
|
|
Psychological difficulties
|
|
2 (8.3)
|
“Low self-confidence”
|
|
|
2 (8.3)
|
“I am ashamed of the body hair, razor burn”
|
|
|
1 (4.2)
|
“Fear that he could find out about the PCOS, especially the body hair”, ”fear of his
lack of understanding”
|
|
|
3 (12.5)
|
“Psychological difficulties”
|
|
Sexual experience
|
|
2 (8.3)
|
“I have the feeling that I wonʼt get pregnant anyway, I think itʼs standing in the
way”
|
|
|
2 (8.3)
|
“Maybe Iʼm not wet enough”
|
|
Somatic conditions
|
|
5 (20.8)
|
“I think itʼs due to the anti-baby pill. But I canʼt say for sure”
|
|
|
1 (4.2)
|
“Because of the PCO Syndrome”
|
|
|
1 (4.2)
|
“Health issues”
|
|
Partnership
|
|
6 (25.0)
|
“My partner doesnʼt excite me any more”
|
|
|
3 (12.5)
|
“Different working hours between me and my partner, stress”
|
|
Other
|
|
2 (8.3)
|
“I have always had problems, donʼt know it any other way.”
|
|
|
3 (12.5)
|
“?”
|
Discussion
The presented study assessed sexual quality of life in women with PCOS and was not
restricted to sexual functioning. The impact of the diverse factors that were assessed
are discussed in the following section.
Sexual functioning and sexual satisfaction
Previous studies have found mixed results regarding sexual functioning. Some authors
have reported impairment women with PCOS in certain areas like orgasm completion [32], genital pain [29], [35] or sexual desire [30], [31], but many studies have not found a significant reduction in overall sexual functioning
[24], [27], [28], [32]. Taken together our study showed moderate impairment of sexual functioning. There
was no impairment at the level of individual sexual problems according to the list
of “sexual problems and dysfunctions”, but the mean FSFI score was significantly lower
than that of a comparison group. The group mean of the FSFI score was still within
the “satisfactory” range (27.5 [5.33], compare [Table 2]) but 19.5% showed a poor outcome when the scores were categorised (i.e. number of
scores below 23). Bearing in mind that sexual dysfunctions are widespread in the population
[66], [85], [86], [87], [88] further studies are necessary to examine whether PCOS contributes to a higher prevalence
of sexual dysfunctions.
This study found moderate sexual satisfaction in PCOS. Regarding sexual satisfaction,
our sample with PCOS was less satisfied than a group of women with vaginal agenesis
[89]. The results are in line with previous research that indicates a reduced sexual
satisfaction in PCOS compared to controls [16], [24], [34], [35].
Social and sexual insecurity
To our knowledge, this study is the first that examined social and sexual insecurity
in PCOS with a detailed questionnaire. The findings showed highly elevated insecurity
in the PCOS sample compared to controls and the scores were notably correlated with
the degree of body hair. Previous studies indicate that there are several psychological
problems associated with hirsutism that can lead to the impairment of sexual well-being
[44]. Hirsute women can feel inhibited, ashamed of their body hair and less feminine
so that their sexual confidence is compromised [32], [37], [54], [90]. Many hirsute women avoid certain social situations [43], [47], and show stronger social fears [45], [47]. Women with PCOS feel less sexually attractive compared to controls [16] or before antiandrogen treatment [29]. Therefore, the presented results are in line with previous findings uncovering
sizable associations between hirsutism and feelings of insecurity. Taking a closer
look at the two subscales of feelings of inadequacy in “social” vs. “sexual” situations,
our participants with PCOS showed higher anxiety in the social domain. A different
picture is seen in women with vaginal agenesis where the bodily condition is not visible
to the naked eye. These women report higher distress in sexual compared to social
situations [89]. These aspects of sexual quality of life are important to the sexual experience
but are an area that remains uncovered when only focussing on sexual dysfunctions.
Self-esteem
Keegan et al. found higher self-esteem in women with PCOS using the RSE, but the sample
was skewed towards the better in socio-demographical terms [44]. DeNiet et al. found lower self-esteem using the same scale, yet, a large sample
size might have led to a significant result [20]. In this study women with PCOS did not differ from controls regarding RSE results.
This contradicts the outcomes of qualitative studies [30], [37], [54]. The RSE assesses a global level of self-worth. In order to detect PCOS-related
problems, questionnaires might have to be more focussed on specific areas of body
image and sexual confidence [4], [5], [6], [7].
Depression
Depression is an important mediator of sexuality in women. This study found depression
in more than half of the women with PCOS (54.5%). High rates have also been reported
by other authors [17], [24], [36], [51], [57], [91], but not all [27]. Tan et al. found a rate of about 50% with at least a mild depression [91], Pastore et al. found 40 – 60% in a PCOS cohort [58]. These numbers are comparable with the result of this study. The point prevalence
of depression in Germany is 5.6% [92]. Studies reporting lower levels might be biased in that they excluded participants
with any prior psychiatric diagnosis or current use of psychiatric medication [27], [34].
The results suggest that enormous rates of depression can be expected in PCOS. Depression
can thus be seen as an important contributor to impaired sexual quality of life in
PCOS and should also always be considered as a treatment focus apart from gynaecological,
endocrinological and sexological care.
Body weight
While the literature presents a clear picture of the inverse relationship between
body weight and sexual function [93], [94] the situation is less clear in women with PCOS [26], [41], [42]. For instance, Ferraresi et al. presented a study showing FSFI scores in the low
functioning range in obese women without PCOS while women with PCOS showed borderline
scores irrespective of weight status [26]. In this study, unexpectedly, a positive correlation between body weight and sexual
function was found. As obesity is only one factor that can contribute to the sexual
experience it seems that other parameters might be overshadowing body weight effects
in PCOS.
Wish for a child
The intensity of the “wish for a child” did not show any substantial correlations
with the main outcome measures. This might be an effect of the two roads infertile
couples can take: Infertility might put strain on the partnership [48], [49], [50], [51] or lead to an intensified sense of belonging [33], [91].
Limitations
The study is based on self-report and did not include expert ratings or physical examinations.
Data on hormonal levels would have allowed the authors to gain more insight into the
data, yet, as Caruso and colleagues suggested psychological and social factors might
indeed be overriding hormonal effects in PCOS [29]. A problem with PCOS is the heterogeneous clinical picture that makes it difficult
to attribute research findings to one common feature. In future studies more homogenous
subgroups could be selected.
The sample size is rather small and the sampling routes might have caused biased results.
Therefore, the results cannot be generalised to the whole population of women with
PCOS. The participants were largely informed about the study via fertility clinics
which most certainly affects sexual activity and partnership rates [95]. For instance feelings of insecurity and the fear of being rejected might be much
more pronounced in samples with lower partnership rates. These fears might even stop
women from engaging in social and sexual encounters and lower their chance of positive
experiences. Recently, differences in medical (e.g. cycle length) and lifestyle measures
have been reported in women with PCOS who had children vs. no children [96]. Depression might exacerbate these difficulties by typical cognitions as a negative
view on the self and a pessimistic view on the world. These effects and mutually reinforcing
mechanisms should be investigated in further quantitative and qualitative studies.
Some strong points of this study are that the investigation was not confined to the
assessment of global scores of sexual function, but especially included the assessment
of feelings of inadequacy in social and sexual situations and single sexual problems.
Several standardised scales were included to ensure comparability and correlations
between them were analysed to reveal associations. The study was not conducted within
a treatment setting, so common social desirability effects could be minimised.
Conclusion
While sexual function per se is only partly impaired, feelings of inadequacy in social
and sexual situations are frequent and considerably correlated with the degree of
hirsutism in women with PCOS and constitute a major problem in their sexual quality
of life. The issue of sexuality should be openly addressed with the patients in order
to reduce feelings of shame and inhibition. Unfortunately, sexual counselling is still
not a standard procedure in hospital and outpatient care, as special training is needed
for doctors and psychologists. If the screening for sexual problems is positive, the
patient should be offered to talk to their attending gynaecologist, see a psychologist
or be referred to a specialist if problems are severe. A more widespread acknowledgement
of the importance of sexual quality of life and the integration of “sexual counselling”
into academic curricula might help to improve the treatment situation.
A main issue in women with PCOS is depression. All patients with PCOS should be screened
for socio-sexual difficulties and emotional problems. Gynaecologists can ask for problems
during the exploration or for instance use short questionnaires for the screening
for depression. If the screening is positive patients should be referred to a psychiatrist
or psychotherapist.
Interdisciplinary cooperation should be fostered and targeted interventions for the
treatment of hirsutism and specialised psychological and sexological counselling should
be offered in order to optimise patient care.
