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European Journal of Obstetrics & Gynecology and Reproductive Biology 169 (2013) 392–396

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European Journal of Obstetrics & Gynecology and


Reproductive Biology
journal homepage: www.elsevier.com/locate/ejogrb

More than just bad sex: sexual dysfunction and distress in patients
with endometriosis
N. Fritzer a,b,*, D. Haas c, P. Oppelt c, St. Renner d, D. Hornung e, M. Wölfler f, U. Ulrich g,
G. Fischerlehner h, M. Sillem i, G. Hudelist b
a
Institute of Psychology, Department of Clinical Psychology and Psychotherapy, Alps-Adria University Klagenfurt, Austria
b
Department of Obstetrics and Gynaecology/Endometriosis and Pelvic Pain Clinic, Wilhelminen Hospital Vienna, Austria
c
Department of Obstetrics and Gynaecology/Center for Endometriosis, General Hospital Linz, Austria
d
Department of Obstetrics and Gynaecology/Center for Endometriosis, Hospital Erlangen, Germany
e
Department of Obstetrics and Gynaecology/Center for Endometriosis, University Hospital Schleswig-Holstein (Campus Lübeck), Germany
f
Department of Obstetrics and Gynaecology/Center for Endometriosis, University Hospital Aachen, Germany
g
Department of Obstetrics and Gynaecology/Center for Endometriosis, Martin-Luther Hospital Berlin, Germany
h
Department of Obstetrics and Gynaecology, Krankenhaus der Barmherzigen Schwestern Linz, Germany
i
Department of Obstetrics and Gynaecology/Center for Endometriosis, Kreiskrankenhaus Emmendingen, Germany

A R T I C L E I N F O A B S T R A C T

Article history: Objectives: The aim of the current study was to evaluate the prevalence and the impact of sexual
Received 30 September 2012 dysfunction, sexual distress and interpersonal relationships in patients with endometriosis.
Received in revised form 7 April 2013 Study design: A questionnaire-based multicentre cohort study was conducted in eight tertiary referral
Accepted 10 April 2013
centres in Austria and Germany. One hundred and twenty-five patients with histologically proven
endometriosis and dyspareunia were included. The Female Sexual Function Index and the Female Sexual
Keywords: Distress Scale were used to screen women’s sexuality. Additionally, we evaluated psychological
Endometriosis
parameters and pain intensity during/after sexual intercourse via a self-administered questionnaire.
Dyspareunia
Sexual dysfunction
Results: Female sexual distress and sexual dysfunction were observed in 97/125 and 40/125 patients.
Statistically significant correlations were found between sexual dysfunction and pain intensity during/
after sexual intercourse (p < 0.01/p < 0.01), a lower number of episodes of sexual intercourse per month
(p < 0.01), greater feelings of guilt towards the partner (p < 0.01) and fewer feelings of feminity
(p < 0.01). Thirty-eight out of 125 women agreed that the primary motivation for sexual intercourse was
to conceive and nearly half of women (46%) included stated that satisfying the partner acted as primary
motivation for sexual contact.
Conclusion: Overall, our findings demonstrate that dyspareunia as a common complaint in patients with
endometriosis causes a severe impairment of sexual function, relationship and psychological wellbeing.
ß 2013 Elsevier Ireland Ltd. All rights reserved.

1. Introduction reduced level of fertility [1]. Endometriosis affects approximately


2% of the general female population and about 50–70% of
Endometriosis is one of the most common gynaecological symptomatic women in their reproductive years [2].
diseases in women’s reproductive years. It is defined as endome- Dyspareunia, one of the most common symptoms, is classified
triotic tissue outside the uterine cavity, which responds to the into two types: superficial (pain in and around the vaginal
ovarian steroids and reacts in the same way as the endometrium introitus) and deep (pain with deep penetration) dyspareunia (SD,
during the menstrual cycle. Endometriosis has been shown to DD). Dyspareunia can be observed in 60–70% of women undergo-
cause adhesions, local inflammatory reactions and symptoms such ing surgery [3–5] and between 50% and 90% of those using
as dysmenorrhea, dyspareunia, chronic pelvic pain and/or a hormonal therapies [6,7].
Sexuality is a complex phenomenon influenced by psychosocial
as well as physiological factors affecting not only physical health,
but also psychological wellbeing, feelings of feminity and
* Corresponding author at: Alps-Adria-University Klagenfurt, Austria Institute of
Psychology, Department of Clinical Psychology and Psychotherapy, Uni-
relationship [8–11]. Dyspareunia has been shown to be associated
versitätsstraße 65, 9020 Klagenfurt, Austria. with important negative sequelae, reduced levels of sexual desire/
E-mail address: fritzern@gmx.net (N. Fritzer). arousal and lower frequency of sexual intercourse [12]. Sexual

0301-2115/$ – see front matter ß 2013 Elsevier Ireland Ltd. All rights reserved.
http://dx.doi.org/10.1016/j.ejogrb.2013.04.001
N. Fritzer et al. / European Journal of Obstetrics & Gynecology and Reproductive Biology 169 (2013) 392–396 393

problems are distressing for women. Interestingly, patients with patient data was obtained from all women included in the analysis.
low relationship satisfaction were nearly six times more likely to The study was approved by the local Institutional Review Board.
have very distressing sexual problems than controls [13].
A principal pathogenic mechanism in dyspareunia is altered 2.2. Main outcome measures
awareness of pain recurrence due to previous experiences of coital
pain. Therefore, the focus during sexual intercourse turns to 2.2.1. FSDS
sensation of (possible) pain instead of enjoyment [14]. The The standardised Female Sexual Distress Scale revised (FSDS) is
experience of pain and the loss of pleasure are recurrently a screening instrument consisting of 13 items for measuring
recognised and become reinforced by repeated experiences. This sexually related personal distress. The fixed choice response
process creates a cognitive scheme of negative expectations that format offered the five increments: ‘‘never’’, ‘‘rarely’’, ‘‘occasional-
disturbs sexuality [14]. ly’’, ‘‘often’’ and ‘‘always’’. Sexual distress was defined as a FSDS-R-
Young women in particular suffering dyspareunia continue to score > 11, based on the published validation studies. The higher
have sexual intercourse despite having pain. One reason is striving the score, the greater the distress [20]. A very good discriminate
to be affirmed in their image of an ideal woman [14]. Furthermore, validity and ability to predict the prevalence of sexual problems
feelings of guilt, sacrifice and resignation may encourage this have been shown for this instrument [21].
behaviour. These facts show that partner’s pleasure is more
important for many women than their own pleasure and wellbeing 2.2.2. FSFI
[14]. The last part consisted of the Female Sexual Function Index
Rape has been demonstrated to have a deleterious effect on (FSFI) which is made up of 19 items encompassing the six domains
female sexual function [15], with lifetime prevalence rates of 17.6% desire (item 1–2), arousal (item 3–6), lubrication (item 7–10),
[16]. According to Golding, sexual assault is significantly associat- orgasm (item 11–13), satisfaction (item 14–16) and pain (item 17–
ed with dysmenorrhea, irregular menstrual bleeding and pain 19). The answering format was a Likert scale with scores varying
during sexual intercourse [17]. Premenopausal women with a from 0 to 5. The total FSFI-score is the sum of all points, and the
posttraumatic stress disorder (PTSD) after rape are 1.5, 3.4, 2.7 and higher the score, the better the sexuality. Sexual dysfunction was
0.6 times more likely to experience sexually transmitted infec- defined as an FSFI-score < 26.55, based on the published valida-
tions, dyspareunia, symptomatic endometriosis and fewer preg- tions studies [22]. For this tool also, a very good discriminate
nancies, respectively [12,18]. Altogether, the literature shows that validity and ability to predict the prevalence of sexual problems
sexual assault has an impact on quality of sex life (QoSL). We have been reported [21].
assume the same effect in our sample and therefore, we also
evaluated history of sexual assault. 2.2.3. NAS
To date, there is a lack of prospective studies evaluating A numeric analogue scale (NAS) ranging from 1 to 10 was used
dyspareunia in women with endometriosis and its impact on sexual to assess pain intensity during and after sexual intercourse. Higher
function. The objective of the present analysis was to investigate the scores indicate greater severity of pain. Validity and reliability of
prevalence and impact of female sexual dysfunction (FSD) and NAS for pain measurement have been demonstrated [23].
sexual distress in these patients. Furthermore, psychosocial Altogether, 67 items evaluated clinical, personal, sexual and
parameters, QoSL and the impact on relationship were evaluated. psychological parameters of subjects.

2. Materials and methods 2.3. Statistical analysis

2.1. Patient data Normality of data distribution was determined by mean and
standard deviation. Statistical analysis was performed by using the
The present work was designed as a multicenter cohort study chi-square test and Fisher’s exact test in the SPSS 15ß software for
conducted in Austria and Germany with eight participating categoric variables, and independent t-test for equality of means to
certified endometriosis and pelvic pain clinics from May 2011 investigate associations between variables and study outcomes. A
until August 2012. Only patients with dyspareunia lasting for at p-value of <0.05 was considered statistically significant and was
least six months (and additional other pain symptoms related to the threshold to reject the null hypothesis.
endometriosis) were included. Women without a histologically
proven diagnosis of endometriosis, pain symptoms of other origin 3. Results
or a history gynaecological malignancy or internal diseases were
excluded. 3.1. Patients and surgical findings
Women were operated on by different surgeons, but all surgical
reports were re-evaluated by an experienced gynaecological One hundred and twenty-five patients fully completed the
surgeon (G.H.). Disease stage was documented using the revised questionnaire and underwent surgical resection with histological
American Fertility Society scoring system (revAFS) [19]. In every proof of endometriotic disease according to surgical and histologi-
case, all visible lesions were removed and the anatomical locations cal reports. Assessed by the revAFS, 38 women (30%) had a minimal
recorded. Every participating woman had histologically proven (Stage I), 31 (25%) a mild (Stage II), 29 (23%) a moderate (Stage III)
endometriosis. and 27 (22%) patients had a severe form (Stage IV) of endometri-
Furthermore, only heterosexually active women without osis.
hormonal treatment (oral contraceptive pills, GnRH, etc.) at the At Stage I of the revAFS, 27 (71%) patients had sexual distress
time of interview and 3 months before were invited to participate. and 4 (11%) a sexual dysfunction. At Stage II, 21 (68%) suffered from
Consecutive recruitment led to generation of data from 128 sexual distress and 10 (32%) from sexual dysfunction. At Stages III
patients. Out of 128 women, one patient was homosexual and two and IV, 26 (90%) and 23 (85%) respectively had sexual distress, and
patients did not provide informed consent and were excluded from 11 (38%) and 15 (56%) respectively had sexual dysfunction. For
the study. detailed information see Table 1.
In addition, the gynaecological, obstetrical, and sociodemo- The mean age of the patients was 30.8 (SD: 6.0) and the median
graphic history was evaluated. Informed consent regarding the duration of the current relationship was 7.1 years (SD: 6.3).
394 N. Fritzer et al. / European Journal of Obstetrics & Gynecology and Reproductive Biology 169 (2013) 392–396

Table 1 Table 2
Sociodemographic characteristics of 125 women with dyspareunia. Sexual behaviour and emotions of all 125 patients.

Mean SD Number (n) Percent (%)

Age 30.8 yrs. 6.0 yrs. Frequency of interrupted intercourse


Duration of partnership 7.1 yrs. 6.3 yrs. Almost always 13 11%
Number of children 0.4 0.8 Frequently 38 30%
Number of abortions 0.1 0.4 Rarely 49 39%
Number of miscarriages 0.1 0.8 Almost never 25 20%
Feelings during sexual intercoursea
N %
Psychological tension 42 34%
Deep infiltrating endometriosis 74 59% Physical tension 51 41%
Superficial/peritoneal endometriosis 51 41% Afraid of pain 82 66%
revAFS Physical and psychical relaxation 33 26%
Stage I 38 (30%) Frequency of communication with the partner about sex
Stage II 31 (25%) Very frequently 25 20%
Stage III 29 (23%) Frequently 68 54%
Stage IV 27 (22%) Rarely 27 22%
Never 5 4%
yrs. = years.
Frequency of communication with the partner about coital pain
Very frequently 17 14%
Frequently 57 45%
Rarely 39 31%
Seventy-four (59%) women were diagnosed with deep infiltrating Never 12 10%
Want more communication 36 29%
and 51 (41%) with superficial/peritoneal endometriosis. Thirty-two
Patients motivation for intercourse is to conceive
out of 125 patients (26%) were observed to be victims of rape once Agree 38 30%
(20 cases) or multiple times (12 cases). Disagree 87 70%
Suffer pain to satisfy the partner
3.2. Sexuality and behaviour Agree 57 46%
Disagree 68 54%
Feelings of being a bad wife because of pain
As depicted in Table 2, 11% (13) of patients reported having to Agree 38 30%
interrupt sexual intercourse because of pain almost always and 30% Disagree 87 70%
(38) frequently. Only 20% (25) out of 125 almost never have to a
Multiple answers possible.
interrupt. The majority of women (66%, 82) are afraid of pain before/
during sexual intercourse, 34% (42) feel psychological and 41% (51)
physical tension. Only 26% (33) experience physical and psychologi- 3.4. Female sexual dysfunction (FSD)
cal relaxation (multiple answers possible).
An important aspect in this context is frank communication There were significant correlations between pain intensity
with the partner. Twenty percent (25) of patients speak very measured via NAS (1–10) and FSD during sexual intercourse (6.5
frequently and 54% (68) frequently with their partner about their [SD: 2.7] vs. 5.2 [SD: 2.3, p < 0.01] and after it (5.7 [SD: 2.8] vs. 4.0
sexual experiences. Only 4% (5) avoid this topic. Communication [SD: 2.6, p < 0.01]) compared to women without this disorder.
about their coital pain is less often: 14% (17) talk very frequently Patients without FSD have also a significantly higher number of
and 45% (57) frequently about their dyspareunia. One-third of episodes of sexual intercourse per month (8.0 [SD: 5.7] vs 4.3 [SD:
patients (31%, 39) communicate rarely and 12 (10%) never. Twenty- 5.0, p < 0.01]. Furthermore, women without a FSD have, measured
nine percent (36) of women want more communication about their via a 5-point-rating-scale, significantly greater feelings of femininity
sexual complaints. (3.5 [SD: 1.0] vs. 2.7 [SD: 1.2, p < 0.01], fewer feelings of guilt
Thirty percent (38) agree that the primary motivation for sexual towards their partner (2.5 [SD: 1.5] vs. 3.2 [SD: 1.3, p < 0.01] and
intercourse is to conceive and nearly half (46%, 57) of the sample less fear of separation because of coital pain (1.9 [SD: 1.2] vs. 2.7 [SD:
agree that they only suffer coital pain to satisfy the partner and to 1.3, p < 0.01], Table 3.
avoid a conflict. Also 30% (38) of women believe to be a bad wife
because of pain.
Patients were given the opportunity to state causes for ‘‘being Table 3
an insufficient partner’’. Relationships between psychological and clinical characteristics of 125 patients
with and without a female sexual dysfunction (FSD) measured via FSFI.
A selection of answers as follows (analogues translation):
Patient 1: ‘‘No enjoyment [during sexual intercourse], just Clinical and psychological features With FSD Without FSD p-value
frustration’’ Mean SD Mean SD
Patient 2: ‘‘Pain limits oneself and the partner’’
Duration of dyspareunia 5.8 yrs. 4.9 yrs. 4.5 yrs. 4.0 yrs. 0.12
Patient 3: ‘‘Unfulfilled desire to have children’’
NAS during intercourse 6.5 2.7 5.2 2.3 <0.01*
Patient 4: ‘‘No desire for sex because of pain’’ NAS after intercourse 5.7 2.8 4.0 2.6 <0.01*
Patient 5: ‘‘Femininity means pain’’ Frequencies of 4.3 5.0 8.0 5.7 <0.01*
Patient 6: ‘‘Can’t fulfil the role model of a ‘real’ women’’ intercourse/month
Patient 7: ‘‘Can’t give the partner what he wants and deserves’’ Feelings of feminity 2.7 1.2 3.5 1.0 <0.01*
Feelings of guilt towards 3.2 1.5 2.5 1.5 <0.01*
3.3. Prevalence the partner
Fear of separation because 1.9 1.2 2.7 1.3 <0.01*
of pain
As assessed with the FSDS and the FSFI, the prevalence of female Feel of understanding by the partner 4.2 1.0 3.8 1.4 0.02*
sexual distress (78%, 97/125) and sexual dysfunction (32%, 40/125)
yrs = years; SD = standard deviation; FSD = female sexual dysfunction.
are both very high. Thirty-eight out of 125 patients (30%) had a a,b
= Numeric Analouge Scale 1–10.
sexual dysfunction and sexual distress simultaneously. Only 21% c f
= Rating Scale 1–5.
(26) of women had none of these disorders. *
p < 0.05; t-test for equality of means.
N. Fritzer et al. / European Journal of Obstetrics & Gynecology and Reproductive Biology 169 (2013) 392–396 395

Table 4
Factors influencing patients with sexual distress (SD, n = 97) and patients with female sexual dysfunction (FSD, n = 40).

Variables SD FSD

n (%) p-value n (%) p-value

Deep infiltrating endometriosis 57 (59) 0.90 24 (60) 0.90


Previous sexual abuse 22 (23) 0.12 14 (35) <0.04*
Motivation for intercourse is to conceivea 34 (35) 0.04* 14 (35) 0.44
Suffer coital pain to satisfy the partnera 57 (59) <0.01* 26 (65) <0.01*
Feeling of being a bad wife because of paina 65 (67) <0.01* 26 (65) 0.13
Feeling of physical tension during intercoursea 47 (49) <0.01* 25 (63) <0.01*
Afraid of pain during intercoursea 71 (73) <0.01* 30 (75) 0.13
a
selected factors were measured via 5-point-rating scale (1 = not at all; 5 = extremely).
*
p < 0.05; Chi-square test.

3.5. Relationship between sexual function and sexual distress is possible. As a consequence, negative emotions towards
themselves, feelings of guilt towards the partner, the opinion of
A significant association was found between FSD and previous being an insufficient partner and fear of breaking up the
sexual abuse (p = 0.04). relationship were predominant.
FSD and sexual distress are also significantly associated with It is very important, therefore, that gynaecologists involved in
feelings of being an ‘‘insufficient partner’’ because of pain (p < 0.01, the management of endometriosis offer patients a profound
p < 0.01), feelings of physical tension during sexual intercourse conversation about their sexuality, because these professionals in
(p < 0.01, p < 0.01) and with suffering pain to satisfy the partner most cases are the first reference persons for suffering women. Due
(p < 0.01, p < 0.04). Being afraid of pain before/during sexual to the fact that sexuality, especially impaired sexuality, is often a
intercourse and main motivation for sexual intercourse is to conceive shameful topic, it is the task of the gynaecologist to address this
are significantly associated with sexual distress (p < 0.01, p = 0.04) delicate issue in a pleasant way.
but not with FSD (p = 0.12, p = 0.44). A limitation of this study might be that only patients recruited
No significant relationship was observed between FSD/sexual in special endometriosis clinics were interviewed and, not
distress and deep infiltrating endometriosis (p = 0.93, p = 0.55). See surprisingly, 45% of women had an advanced stage of endometri-
also Table 4. osis. Obviously, the characteristics of sex life and impairment of
this sample possibly are not identical to those of all women with
4. Comments endometriosis.
A strength of this paper lies in the exclusion of patients using
Dyspareunia is four times more frequent in women with hormonal therapies (LNG IUD, oral contraceptive pill, GnRH, etc.),
endometriosis than in controls and five times more frequent in since these medications exert an effect on dyspareunia and sexual
patients with peritoneal endometriosis than in those with function [26,27].
endometriotic cysts [24]. Dyspareunia is most severe before Many studies have evaluated the prevalence of female sexual
menstruation [25] and associated with deep infiltrating endome- dysfunction [28–30], but to our knowledge, this work is the first
triotic lesions of the uterosacral ligaments (USL) [26]. Another investigation on the prevalence of sexual dysfunction compared
factor for the severe coital pain may also be the traction of scarred with psychological parameters in women with endometriosis. Our
inelastic USL during sexual intercourse [25]. results provide evidence that dyspareunia often causes sexual
Despite the fact that dyspareunia is a common sexual problem dysfunction/distress and distinctly reduces women’s psychological
in patients with endometriosis the impact on sexuality, female wellbeing.
identity and relationship in these patients has rarely been a subject In conclusion, dyspareunia is a predominant symptom in
of research. women with endometriosis, with a significant negative impact on
This study found a lower prevalence of female sexual sexuality and therefore quality of life and psychological wellbeing.
dysfunction than previously conducted investigations [28–30], Psychological and psychosexual counselling should be offered
interviewing middle-aged women with a prevalence between 37% when dealing with endometriosis patients and should be an
and 56%. The National Health & Social Life Survey, recruiting 1749 essential component of endometriosis treatment.
women, found a prevalence of 43% with most common sexual Overall, our findings demonstrate that dyspareunia in most
complaints in younger age [31] in contrast to Castelo-Branco et al., cases confers a severe impairment of sexual function, relationship
who showed an increase of dysfunction with advancing years and psychological wellbeing in women affected by endometriosis.
interviewing middle-aged women [28].
Apart from the varying age and menopausal status, reasons for Conflict of interest
the considerable differences could be differing definitions of sexual
dysfunction and differing evaluation methods. In our sample, No competing financial interests exist.
however, 32% of women had a sexual dysfunction and 78% sexual
distress.
Acknowledgements
The results of coital pain were a reduced number of episodes of
sexual intercourse, interruption or avoidance. Some of the women
The authors want to thank all participating women for their
tried to cope with the complaints, either to satisfy the partner or to
support. This work was supported by the OEGEO, Österreichische
conceive. Hence, they sacrificed their own pleasure and had sexual
Gesellschaft für Endokrinologische Onkologie.
intercourse despite pain with the focus on the partner’s pleasure
instead of themselves.
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