Keywords
endometriosis;
longitudinal; mental
health; physical health;
psychosocial; PROMIS
PSyChOl OGy & hEAl Th 1157
1. Introduction
Endometriosis (EM) is a chronic inflammatory gynecological disease defined as the
growth of tissue similar to the uterine lining outside of the uterus (Giudice, 2010).
EM affects about 10% of people born with female-assigned reproductive organs and
is associated with infertility and pelvic pain, in some cases chronic pelvic pain (Bulun,
2018). Research shows that EM is associated with impaired mental health (l aganà
et al., 2015; Pope et al., 2015; van Barneveld et al., 2021), a reduced quality of life
(de Graaff et al., 2016; Siedentopf et al., 2008) and debilitated sexual functioning
(Aerts et al., 2018; Pérez-l ópez et al., 2020). It takes 4–11 years from the first onset
of symptoms (Taylor et al., 2021) and the consultation of several doctors (De Graaff
et al., 2013; Greene et al., 2009) to receive the correct diagnosis. This long diagnostic
delay has repeatedly been described as particularly distressing by individuals affected
by the disease (Ballard et al., 2006; Denny, 2004; Jones et al., 2004) as it can lead to
an exacerbation of pain symptoms, hopelessness, difficulties in patient–
doctor-relationships and a general lack of trust in the medical system (Facchin et al.,
2017b). Research highlights the relevance of the relationship between patient and
practitioner in this context (Kundu et al., 2015; Roomaney et al., 2019) as communi -
cation about pain and the recognition of EM symptoms by the attending doctor have
been shown to be of particular importance on the path to diagnosis (Bullo & Weckesser,
2021; Drinkell et al., 2023; Fernley, 2021; Manderson et al., 2008). According to l ukas
et al. ( 2018) these factors are associated with the satisfaction with medical support
in individuals affected by EM. Satisfaction with medical support, in turn, is an import -
ant factor in the individual’s adherence in general (Anhang Price et al., 2014; l ewin
et al., 2001) and thus can be assumed to be critical for their overall health.
The association between (chronic) pelvic pain symptoms and health outcomes
(physical health, mental health, quality of life) in EM has been widely demonstrated
(Brooks et al., 2020; Comptour et al., 2020; Facchin et al., 2017a; Márki et al., 2017;
Netzl et al., 2022; van Barneveld et al., 2021), whereas psychosocial factors relevant
to the treatment of EM are still understudied. In previous studies, for example, dis -
positions, personality traits, resilience, coping styles or stress associated with EM
have been examined. The results pointed toward a reduced optimism (Morán-Sánchez
et al., 2020) and higher trait anxiety (Quiñones et al., 2015) in people affected by
EM and an association between painful EM and higher harm avoidance as well as
lower exploratory excitability (Facchin et al., 2016). Other research suggests that
resilience in individuals living with EM may be an important factor in their life sat -
isfaction (Romaniuk & Oniszczenko, 2023). In other studies, the importance of coping
styles for the emotional well-being in EM has been investigated (Eriksen et al., 2008;
Quiñones et al., 2015; Rees et al., 2020) and a bidirectional relationship between EM
and chronic stress has been suggested (Petrelluzzi et al., 2008; Reis et al., 2020).
Generally, the experience of EM is considered a disruption in the individual’s life,
posing the challenge to integrate this chronic condition into one’s self-concept
(Facchin et al., 2017b ) and to regain interpretative control over one’s own life
(Wischmann, 2008) or a sense of coherence (SOC). The concept of SOC is defined
as a global orientation that expresses the extent to which one has a pervasive,
enduring though dynamic feeling of confidence in the comprehensibility,
1158 J. NETZl ET Al.
manageability and meaningfulness of the internal and external demands in one’s
life (l angeland, 2014). A higher SOC is associated with lower levels of anxiety and
depression, greater physical well-being and lower perceived stress (Zirke et al., 2007).
The concept of self-efficacy is closely related to SOC and refers to the belief in one’s
abilities, skills and competencies across various situations. h igher self-efficacy is
associated with higher self-esteem and optimism and lower anxiety (Beierlein et al.,
2012). In people living with EM, lower self-efficacy was associated with poorer mental
health (Facchin et al., 2017a), as were negative feelings toward the medical profes -
sions and impaired sexual functioning (Roomaney et al., 2019). Uncontroversially, EM
is known to be a heavy sexual burden (la Rosa et al., 2020; Sullivan-Myers et al.,
2023) and several researchers pointed out the association between impaired sexual
functioning and psychological distress in individuals living with the disease (de Graaff
et al., 2016; Facchin et al., 2017b; Roomaney et al., 2019). These studies provided
important insights into the associations between psychosocial factors and well-being
in EM. Still, it remains necessary to investigate additional psychosocial factors in EM
to improve the understanding of this complex disease and its physical, psychological
and social consequences and, thus, overcome them. Moreover, there have been
repeated calls to include longitudinal data in the research (Facchin et al., 2017a;
Márki et al., 2017).
The goal of this study was to increase the knowledge about physical and psycho -
social factors associated with self-reported physical and mental health in individuals
living with EM. First, cross-sectional associations between putative physical and psy -
chosocial predictor variables and physical and mental health were explored.
Sociodemographic (age, income, relationship status, EM-related strain on the relation -
ship), EM-related (diagnostic delay, time since receiving the EM diagnosis, number of
surgeries, number of pelvic pain types, pelvic pain intensity, number of pelvic pain
days per month, hormonal treatment, infertility) and psychosocial variables (SOC,
self-efficacy, sexual satisfaction, satisfaction with the gynecological treatment) were
included. Based on the referenced literature, the included psychosocial factors were
assumed to be of high relevance for the well-being in EM. The goal was to test them
in a comprehensive statistical model. The statistical procedure was repeated for phys -
ical and mental health assessed at t2 three months later, controlling for physical or
mental health at survey date t1. By including data from a second survey date, we
aimed to increase the knowledge about longer-term associations between physical
and psychosocial factors and self-reported health in people living with EM, and con -
sequently derive treatment implications.
2. Material and methods
This online study was conducted at the Endometriosis Centre of Charité—
Universitätsmedizin Berlin. Data were collected between February and August 2021
using Research Electronic Data Capture (REDCap) tools hosted at Charité—
Universitätsmedizin Berlin (harris et al., 2009, 2019). REDCap is a secure, web-based
software platform designed to support data capture for research studies, providing
(1) an intuitive interface for validated data capture, (2) audit trails for tracking data
manipulation and export procedures, (3) automated export procedures for seamless
PSyChOl OGy & hEAl Th 1159
data downloads to common statistical packages and (4) procedures for data integra -
tion and interoperability with external sources.
2.1. Ethical approval
The study was conducted in accordance with the Declaration of helsinki, and approved
by the Ethics Committee of Charité—Universitätsmedizin Berlin (Number: EA4/248/19).
Informed consent to collect and publish the data has been obtained from all partic -
ipants via an opt-in item. If participants did not consent, the survey ended
automatically.
2.2. Participants and procedure
Participation in the study was publicly advertised (e.g. on Facebook and Instagram).
The participants had to meet the following inclusion criteria: being at least 18 years
old and pre-menopausal, speaking fluent German, not suffering from a malignant
disease or infection, no current pregnancy and no ovariectomy. If any of these criteria
were not met, the survey ended automatically. After obtaining informed consent,
participants were asked to generate a pseudonym to match the data from survey
dates t1 and t2. At the end of survey date t1, participants were asked to send an
e-mail to the study team so that their e-mail-addresses could be saved independently
of the study data. After three months, participants were sent the browser link to
survey date t2.
Initially, 734 participants met the inclusion criteria and completed the survey at
t1. All of them had been born with a uterus and ovaries and 723 (98%) reported a
female, 5 (1%) a male and 6 (1%) a diverse gender identity. To avoid bias in the
analyses, these 11 (2%) people were excluded. EM diagnoses by laparoscopy ( n = 624,
86%), magnetic resonance imaging ( n = 25, 4%) or sonography ( n = 74, 10%) were
accepted. The final sample comprised n_t1 = 723 cis women with EM at t1 (cis or
cisgender describes individuals who identify with the gender they were assigned at
birth: cis women were assigned the female gender at birth and identify with the
female gender), of whom n_t2 = 216 cis women with EM also completed the ques -
tionnaire at the second survey date t2. All of these n_t2 = 216 participants had received
the EM diagnosis by laparoscopic surgery. To rule out attrition bias, participants who
completed t2 ( n_t2 = 216) were tested against participants who only completed t1
(n = 507) in sociodemographic and EM-related data. In these analyses, no significant
differences were found ( Table 1 ).
2.3. Measures and instruments
Participants responded to a comprehensive item battery collecting sociodemographic,
clinical and EM-/pelvic-pain-related information. Participants were asked to rate the
strain EM puts on their current relationship (0 = not at all to 100 = extremely strained
by EM). household net income was assessed with one item (3000€). Participants were
1160 J. NETZl ET Al.
asked whether they suffered from dysmenorrhoea, non-menstrual cyclical pelvic pain
(e.g. during ovulation), non-cyclical pelvic pain, chronic pelvic pain, pain related to
sexual intercourse, dyschezia and dysuria, and to rate the typical intensity of each of
the reported types of pain (0 = no pain to 100 = worst pain imaginable). An average
pelvic pain intensity item was calculated.
Table 1. s ociodemographic, eM-related and psychosocial data at t1 and physical and mental
health scores at t1 and t2.
Variable
t1 sample ( n_t1 = 723) t2 sample ( n_t2 = 216)
N
M ± sD/Frequency
(%) N
M ± sD/Frequency
(%) pa
age 723 30.60 ± 6.31 216 30.56 ± 6.47 .915
Min, Max 18, 51 18, 47
Relationship 723 553 (77%) 216 160 (74%) .829
eM-related strain on the
relationship
541 66.98 ± 20.10 157 64.95 ± 21.63 .132
Min, Max [0–100] 0, 100 0, 100
o ther gynecologic
diseaseb
723 159 (22%) 216 42 (19%) .280
o ther pain disorder b 723 271 (38%) 216 78 (36%) .619
children b 720 125 (17%) 30 (14%) .107
Infertility 718 174 (24%) 216 45 (21%) .163
hormonal treatment 723 380 (53%) 216 125 (58%) .062
t ime since eM diagnosis
(years)
721 3.45 ± 4.18 216 3.49 ± 4.52 .862
Min, Max 0, 30 0, 30
Diagnostic delay (years) 705 9.11 ± 6.45 209 8.91 ± 6.51 .596
Min, Max 0, 32 0, 31
Number of surgeries 721 1.43 ± 1.24 215 1.39 ± 1.20 .209
Min, Max 0, 6 0, 6
Dysmenorrhoea b 723 364 (50%) 216 109 (51%) .967
Non-menstrual cyclical
pelvic pain b
723 390 (54%) 216 108 (50%) .165
Non-cyclical pelvic pain b 723 503 (70%) 216 154 (71%) .511
chronic pelvic pain b 723 157 (22%) 216 41 (19%) .245
Pain at sexual
intercourseb
723 526 (73%) 216 153 (71%) .449
Dyscheziab 723 408 (56%) 216 119 (55%) .636
Dysuriab 723 237 (33%) 216 59 (27%) .041
Number of pelvic pain
types
723 3.58 ± 1.63 216 3.44 ± 1.68 .145
Min, Max 0, 7 0, 7
Pelvic pain days per
month
723 12.26 ± 9.44 216 11.69 ± 9.33 .290
Min, Max 0, 31 0, 31
Pelvic pain intensity 723 29.52 ± 16.90 216 27.82 ± 16.76 .077
Min, Max [0–100] 0, 93 0, 89
soc l -9 723 4.17 ± 1.10 216 4.22 ± 1.10 .366
aKsU 714 3.65 ± 0.71 216 3.60 ± 0.72 .188
KFsP-F – sexual
satisfaction c
696 13.59 ± 5.35 216 14.00 ± 4.96 .154
FIPs 690 3.32 ± 1.00 216 3.25 ± 0.95 .253
Physical health t1 d 723 45.54 ± 8.34 216 45.90 ± 8.24 .336
Mental health t1 d 723 37.98 ± 7.04 216 38.59 ± 7.27 .068
Physical health t2 d – 216 46.28 ± 8.44
Mental health t2 d – 216 40.45 ± 7.68
aIndependent samples t-tests were used for continuous variables and χ 2-tests were used for categorical variables
to compare participants who completed t2 ( n_t2 = 216) with those who only completed t1 ( n = 507, descriptive
Results
not shown).
bVariables are reported descriptively only.
cl evene’s test showed that the variances for KFsP-F sexual satisfaction were not equal, p = .009.
dt -scores: M = 50 ± 10.
PSyChOl OGy & hEAl Th 1161
Physical and mental health were measured using the Patient Reported Outcomes
Measurement Information System 29 v2.1 (PROMIS-29 Profile v2.1, hays et al., 2018).
Using item response theory methods for item selection, the PROMIS initiative devel -
oped a variety of item banks to assess different health domains. The complete ques -
tionnaire can be found online and is openly accessible (‘PROMIS-29 Profile v2.1’ , 2023).
The PROMIS Profile 29 assesses the seven health domains physical function (e.g. ‘Are
you able to do chores such as vacuuming or yard work?’), anxiety (e.g. ‘I felt fearful’),
depression (e.g. ‘I felt worthless’), fatigue (e.g. ‘I feel fatigued’), sleep disturbance (e.g.
‘I had a problem with my sleep’), ability to participate in social roles and activities
(e.g. ‘I have trouble doing all of my regular leisure activities with others’) as well as
pain interference (e.g. ‘how much did pain interfere with your day to day activities?’)
with four questions each. Additionally, it comprises one item on the average general
pain intensity in the past seven days (0 = no pain to 10 = worst pain imaginable).
Physical functioning and the ability to participate in social roles and activities are
assessed without a specific timeframe, whereas all other health domains come with
the instruction to refer to the past seven days. Reliability scores for the subscales in
the study sample were Cronbachs α = .831 to .946 (t1) and Cronbachs α = .828 to
.945 (t2). Raw scores and T-scores for each domain and raw scores for the general
pain intensity item of sample n_t1 are presented in Appendix A. Based on the scoring
instructions provided by hays et al. ( 2018) and Spritzer and hays ( 2018), physical and
mental health summary T-scores were calculated with M = 50 ± 10. These T-scores are
derived from the general U.S. population and are commonly used as default values
as there are no country-specific scoring algorithms to date (Fischer et al., 2018). h igher
scores in these summary scores represent better physical or mental health. Additionally,
they include a direct comparison with the U.S. general population, with M = 50 ± 10
representing the average range. In the calculation of the PROMIS physical and mental
health summary scores all seven health domains, that is physical, psychological and
social factors, are used, each with a different weighting.
Sense of Coherence SOC was assessed using the Sense of Coherence Scale l -9 SOC
l -9 (Schumacher, Wilz, Gunzelmann, & Brähler, 2000; possible scores: 1–7, Cronbachs
α = .859 (t1), Cronbachs α = .876 (t2)), self-efficacy was assessed according to the
Self-Efficacy Scale—Short Form AKSU (Beierlein et al., 2012; possible scores: 1–5,
Cronbachs α = .847 (t1), Cronbachs α = .852 (t2)). Sexual satisfaction was measured
along one scale of a German adaptation of the Brief Index of Sexual Functioning
KFSP-F (hartmann et al., 2002; possible scores: 3–21, Cronbachs α = .792 (t1), Cronbachs
α = .858 (t2)) and satisfaction with the gynecological treatment according to the
Freiburg Index of Patient Satisfaction FIPS (Schoenthaler et al., 2012) with the specific
instruction to think about ‘the gynecological examinations and treatments carried out’
(possible scores: 1–6, Cronbachs α = .778 (t1), Cronbachs α = .774 (t2)). h igher scores
on all of these scales represent a larger portion of the measured concept, except for
the FIPS scale, where lower scores represent greater treatment satisfaction.
2.4. Statistical analyses
Descriptive statistics were calculated by Mean ± Standard deviation. Parametric Pearson
correlation analyses between the outcome variables physical and mental health
1162 J. NETZl ET Al.
assessed at t1 and the putative predictor variables collected at t1 were calculated to
preselect predictor variables for the subsequent regression analyses. The following
putative predictor variables were examined: sociodemographic (age, income, relation -
ship status, EM-related strain on the relationship), EM-related (diagnostic delay, time
since receiving the EM diagnosis, number of surgeries, number of pelvic pain types,
pelvic pain intensity, number of pelvic pain days per month, hormonal treatment,
infertility) and psychosocial variables (SOC, AKSU, KFSP-F—sexual satisfaction, FIPS).
Putative predictor variables that showed significant bivariate associations with the
outcome variable were then entered stepwise (enter method) into multiple regression
analyses with step I sociodemographic, step II EM-related and step III psychosocial
variables. All three steps were calculated for physical and mental health at t1. Pairwise
exclusion of missing values was used to keep the sample size at a maximum and to
avoid limiting the data set: Since the item on EM-related strain on the relationship
had only been answered by participants who were in a relationship at the time, a
listwise exclusion of missing values would have resulted in the exclusion of all par -
ticipants who were single and thus in a less representative sample. To evaluate the
predictive power of each set of predictor variables, R2 and the change in variance
explanation are reported for each step. To test whether the results were different
when only those participants who had received the EM diagnosis by laparoscopy
(n = 624) were considered cross-sectional correlation and regression analyses were
repeated for this subsample (Appendix C).
Analyses were repeated for the outcome variables physical and mental health
assessed three months later at t2, with physical or mental health at t1 included as a
control variable to partialize out its influence (Reinders, 2006). Partial correlation
analyses between the health outcome at t2 and the sociodemographic, physical and
psychosocial putative predictor variables collected at t1 were performed, controlling
for the same health outcome at t1. Next, multiple regression analyses with the steps
I physical health at t1 or mental health at t1 and II putative predictor variables that
were significantly associated in the partial correlation analyses were performed. Again,
pairwise exclusion of missing values was used and R2 is reported.
Statistical analyses were performed using IBM SPSS Statistics for Windows, Version
26.0 (IBM Corp, 2019) and p-values of p ≤ 0.05 were considered statistically significant.
Statistical assumptions of multiple linear regression analysis (Field, 2009) were tested
for all regression analyses (Appendices B and C).
3. Results
The descriptive results of sociodemographic, EM-related and psychosocial data col -
lected at t1 are presented in Table 1 . At t1, participants were on average 30 years old
and three quarters of them were in a relationship. Median monthly net household
income was 2001–2500€ with percentile 25 = 1001–1500€ and percentile 75 = >3000€.
Most participants did not have children and about one quarter reported being infer -
tile. The average time since EM diagnosis was 3.5 years and half of the sample received
hormonal treatment. The average delay in diagnosis from the first onset of EM symp -
toms was 9 years. Most participants suffered from pelvic pain symptoms and one-fifth
of them reported chronic pelvic pain.
PSyChOl OGy & hEAl Th 1163
The PROMIS physical and mental health summary T-scores at both t1 and t2 are
shown in Table 1 . Compared to the general U.S. population ( M = 50 ± 10), participants
reported about half a standard deviation below average physical health and one
standard deviation below average mental health at t1 (physical health: 45.54 ± 8.34,
mental health: 37.98 ± 7.04) and t2 (physical health: 46.28 ± 8.44, mental health:
40.45 ± 7.68).
3.1. Cross-sectional analyses
Table 2 presents the results of Pearson correlation analyses between the putative
predictor variables and physical and mental health scores at t1. Both higher physical
health and higher mental health were associated with higher income, lower EM-related
strain on the relationship, shorter diagnostic delay, fewer surgeries, fewer pelvic pain
types, lower pelvic pain intensity, fewer pelvic pain days per month, a higher SOC,
higher self-efficacy, higher sexual satisfaction and higher satisfaction with the gyne -
cological treatment.
Putative predictor variables that showed significant correlations with the health out -
come were then entered into hierarchical multiple regression analyses in three steps: I
sociodemographic, II EM-related and III psychosocial predictor variables. The results are
presented in Table 3. All three steps were significant for both physical and mental health
at t1 ( p < .001). The variance explained by sociodemographic variables was 7.3% for
physical and 14.5% for mental health at t1. The inclusion of EM-related variables (step II)
increased the percentage of variance explained by 24.6% for physical and 12.7% for
mental health at t1. Step III, which additionally included psychosocial predictor variables,
led to an increase in variance explanation of 8.4% for physical and of 25.8% for mental
Table 2. c ross-sectional correlation analyses between physical and mental health scores at t1
and putative predictor variables.
Putative predictor
variable
Physical health t1 a Mental health t1 a
N r p N r p
s ociodemographic variables
Income 719 .160 <.001 719 .167 <.001
eM-related strain
on the relationship
541 −0.218 <.001 541 −0.344 <.001
eM-related variables
Diagnostic delay 705 −0.115 .002 705 −0.077 .041
Number of
surgeries
721 −0.187 <.001 721 −0.079 .035
Number of pelvic
pain types
723 −0.435 <.001 723 −0.347 <.001
Pelvic pain intensity 723 −0.454 <.001 723 −0.408 <.001
Pelvic pain days
per month
723 −0.472 <.001 723 −0.360 <.001
Psychosocial variables
soc l -9 723 .359 <.001 723 .626 <.001
aKsU 714 .297 <.001 714 .356 <.001
KFsP-F – sexual
satisfaction
696 .099 .009 696 .144 <.001
FIPs 690 −0.343 <.001 690 −0.363 .05).
1164 J. NETZl ET Al.
health at t1. The percentage of variance explained by the overall models was 40.3% for
physical health at t1 and 53.0% for mental health at t1 (see R2 in the footnotes of Table 3).
In cross-sectional regression analyses, physical health was higher if the number of
surgeries, the pelvic pain intensity and the number of pelvic pain days per month were
lower and if SOC, self-efficacy and satisfaction with the gynecological treatment were
higher ( Table 3). Mental health was higher if the EM-related strain on the relationship,
the pelvic pain intensity and the number of pelvic pain days per month were lower
and if SOC and satisfaction with the gynecological treatment were higher ( Table 3 ).
Table 3. Results of the cross-sectional multiple regression analyses for the outcome variables
physical health at t1 and mental health at t1.
o utcome variable Predictor variable a
c oefficientsb
B (s td.-error) β pb 95%-cI b
Physical health t1 c c onstant 46.06 (2.65) <.001 40.85, 51.27
Income 0.18 (0.14) .05 .209 −0.10, 0.45
eM-related strain on
the relationship
−0.01 (0.02) −0.01 .774 −0.04, 0.03
Diagnostic delay d −0.09 (0.05) −0.07 .051 −0.18, 0.00
Number of surgeries −0.67 (0.24) −0.10 .004 −1.14, −0.21
Number of pelvic pain
types
−0.16 (0.33) −0.03 .640 −0.80, 0.50
Pelvic pain intensity −0.10 (0.03) −0.19 .002 −0.15, −0.04
Number of pelvic pain
days per month
−0.22 (0.04) −0.25 <.001 −0.30, −0.15
soc-l9 1.22 (0.33) .16 <.001 0.58, 1.86
aKsU 1.38 (0.48) .12 .004 0.44, 2.31
KFsP-F - sexual
satisfaction
0.06 (0.06) .04 .314 −0.06, 0.18
FIPs −1.23 (0.31) −0.15 <.001 −1.83, −0.62
Mental health t1 e c onstant 33.15 (1.99) <.001 29.25, 37.06
Income 0.02 (0.10) .01 .843 −0.18, 0.23
eM-related strain on
the relationship
−0.04 (0.01) −0.10 .005 −0.06, −0.01
Diagnostic delay −0.02 (0.03) −0.02 .482 −0.09, 0.04
Number of surgeries −0.03 (0.18) −0.01 .885 −0.37, 0.32
Number of pelvic pain
types
0.18 (0.25) .04 .476 −0.31, 0.66
Pelvic pain intensity −0.09 (0.02) −0.21 <.001 −0.13, −0.04
Number of pelvic pain
days per month
−0.11 (0.03) −0.15 <.001 −0.16, −0.05
soc-l9 3.16 (0.24) .49 <.001 2.68, 3.64
aKsU 0.20 (0.36) .02 .580 −0.50, 0.90
KFsP-F - sexual
satisfaction
0.01 (0.05) .01 .854 −0.08, 0.10
FIPs −1.02 (0.23) −0.15 <.001 −1.48, −0.57
Note. linear hierarchical regression analyses (enter method).
at he number of participants without missing values in the respective predictor variable and included in the pairwise
analysis can be found in table 2 , column N.
bB = unstandardised beta coefficient. s td. error = standard error of the unstandardised beta coefficient. B = standardised
coefficient. p = p-value, probability. 95%- cI = 95% confidence interval for the unstandardised beta coefficient B.
cstep I: sociodemographic variables, R2 = .073, p <.001, F(2, 516) = 20.23, p <.001; step II: sociodemographic and
eM-related variables, R2 = .319, p <.001, F(7, 511) = 34.16, p <.001; step III: sociodemographic, eM-related and
psychosocial variables, R2 = .403, p <.001, F(11, 507) = 31.05, p <.001. t he degrees of freedom are based on the
minimum pairwise n.
dDiagnostic delay remained a significant predictor variable for physical health at t1 when only those participants
who had received the eM diagnosis by laparoscopy ( n = 624) were considered ( p < .05, a ppendix c ).
estep I: sociodemographic variables, R2 = .145, p <.001, F(2, 516) = 43.89, p <.001; step II: sociodemographic and
eM-related variables, R2 = .272, p <.001, F(7, 511) = 27.22, p <.001; step III: sociodemographic, eM-related and
psychosocial variables, R2 = .530, p <.001, F(11, 507) = 52.06, p <.001. t he degrees of freedom are based on the
minimum pairwise n.
PSyChOl OGy & hEAl Th 1165
When only participants who had received the EM diagnosis by laparoscopy ( n = 624)
were included, results were the same in all correlation analyses and both regression
analyses with the exception of diagnostic delay remaining a significant predictor for
physical health at t1 (see footnotes of Table 3 and Appendix C). In cross-sectional
regression analyses, physical health of those participants who had received the EM
diagnosis by laparoscopy was higher if the diagnostic delay was shorter, the number
of surgeries, the pelvic pain intensity and the number of pelvic pain days per month
were lower and if SOC, self-efficacy and satisfaction with the gynecological treatment
were higher.
3.2. Longitudinal analyses
Table 4 presents the results of partial correlation analyses between the putative pre -
dictor variables assessed at t1 and physical and mental health at t2. In these analyses,
the health outcome assessed at t1 was a control variable. When controlling for physical
health at t1, higher physical health at t2 was significantly associated with lower
EM-related strain on the relationship, fewer pelvic pain types, lower pelvic pain inten -
sity, fewer pelvic pain days per month and higher satisfaction with the gynecological
treatment at t1. h igher mental health at t2 was significantly associated with higher
satisfaction with the gynecological treatment at t1, when controlling for mental health
at t1. Figure 1 shows significant results from both cross-sectional and longitudinal
correlation analyses.
Those putative predictor variables that showed significant associations with the
health outcome in the partial correlation analyses were then entered into hierarchical
multiple regression analyses as a second step. In the first step, the health outcome
at t1 was entered into the analyses. The results are presented in Table 5 . Both steps
were significant for both physical and mental health at t2 ( p < .001). The variance
explained by entering the health outcome at t1 was 59.7% for physical and 60.3%
for mental health. The inclusion of physical and psychosocial predictor variables led
Table 4. Partial correlation analyses between physical and mental health scores at t2 and putative
predictor variables at t1, controlling for physical and mental health at t1.
c ontrol variable Putative predictor variable Physical health t2 a
Physical health t1 N r p
eM-related strain on the
relationship
157 −0.159 .047
Number of pelvic pain types 216 −0.201 .003
Pelvic pain intensity 216 −0.197 .004
Pelvic pain days per month 216 −0.154 .023
FIPs 216 −0.249 <.001
Mental health t2 b
Mental health t1 N r p
FIPs 216 −0.214 .002
aNo significant associations were found with the variables age, income, relationship status, diagnostic delay, time
since eM diagnosis, number of surgeries, hormonal treatment, infertility, soc-l9, aKsU and KFsP-F - sexual sat -
isfaction ( p > .05).
bNo significant associations were found with the variables age, income, relationship status, eM-related strain on the
relationship, diagnostic delay, time since eM diagnosis, number of surgeries, number of pelvic pain types, pelvic
pain intensity, number of pelvic pain days per month, hormonal treatment, infertility, soc-l9, aKsU and KFsP-F
- sexual satisfaction ( p > .05).
1166 J. NETZl ET Al.
to an increase in variance explanation of 4.5% for physical and 1.8% for mental health
at t2. The percentage of variance explained by the overall models was 64.2% for
physical and 62.1% for mental health at t2 (see R2 in the footnotes of Table 5 ). In
addition to the health outcome at t1, satisfaction with the gynecological treatment
at t1 remained a significant predictor in both analyses: Physical and mental health
at t2 were higher if satisfaction with the gynecological treatment at t1 had been
higher ( Table 5 ).
Figure 1. significant associations between physical and mental health scores in cross-sectional cor -
relation analyses. Bold variables denote significant associations in longitudinal partial correlation
analyses with physical health at t2 (control variable: physical health at t1). Italics denote significant
associations in longitudinal partial correlation analyses with mental health at t2 (control variable:
mental health at t1).
Table 5. Results of the longitudinal multiple regression analyses for the outcome variables physical
health at t2 and mental health at t2.
o utcome variable Predictor variable a
c oefficientsb
B (s td.-error) β pb 95%-cI b
Physical health t2 c c onstant 23.60 (4.00) <.001 15.70, 31.50
Physical health t1 0.67 (0.06) .66 <.001 0.56, 0.79
eM-related strain on
the relationship
−0.03 (0.02) −0.09 .096 −0.07, 0.01
Number of pelvic pain
types
−0.30 (0.49) −0.06 .541 −1.27, 0.67
Pelvic pain intensity −0.02 (0.05) −0.03 .721 −0.11, 0.08
Number of pelvic pain
days
−0.04 (0.06) −0.04 .555 −0.16, 0.08
FIPs −1.36 (0.43) −0.15 .002 −2.20, −0.51
Mental health t2 d c onstant 14.23 (0.78) <.001 9.42, 19.03
Mental health t1 0.78 (0.05) .74 <.001 0.68, 0.87
FIPs −1.14 (0.36) −0.14 .002 −1.84, −0.44
Note. linear hierarchical regression analyses (enter method).
at he number of participants without missing values in the respective predictor variable and included in the pairwise
analysis can be found in table 4 , column N.
bB = unstandardised beta coefficient. s td. error = standard error of the unstandardised beta coefficient. B = standardised
coefficient. p = p-value, probability. 95%- cI = 95% confidence interval for the unstandardised beta coefficient B.
cstep I: physical health at t1, R2 = .597, p <.001, F(1, 152) = 225.436, p <.001; step II: physical health at t1 and
sociodemographic, eM-related and psychosocial variables which showed a significant association in partial cor -
relation analyses, R2 = .642, p = .004, F(6, 147) = 43.896, p <.001. t he degrees of freedom are based on the
minimum pairwise n.
dstep I: mental health at t1, R2 = .603, p <.001, F(1, 214) = 325.178, p <.001; step II: mental health at t1 and
sociodemographic, eM-related and psychosocial variables which showed a significant association in partial cor -
relation analyses, R2 = .621, p = .002, F(2, 213) = 174.695, p <.001. t he degrees of freedom are based on the
minimum pairwise n.
PSyChOl OGy & hEAl Th 1167
4. Discussion
Previous research has shown that EM symptoms such as menstrual irregularities,
dysmenorrhoea, chronic pelvic pain, dyspareunia and infertility often negatively affect
the individual’s psychological and social functioning (laganà et al., 2017; Vitale et al.,
2016, 2017). Consequently, EM is considered a disabling condition that may signifi -
cantly compromise social relationships, sexuality and mental health. In this study,
physical and mental health in people living with EM and its associations with physical
and psychosocial characteristics were examined. In line with previous findings of
impaired health in people with EM (Brandes, 2007), participants in this study reported
their mental health to be one standard deviation below and, thus, significantly poorer
than the general population’s average. Conversely, the results for physical health were
within the average range. This is in contrast to the high level of pain symptoms
reported by participants ( Table 1) and could be explained by the design of the PROMIS
Profile 29. Firstly, the PROMIS pain intensity item does not focus on pelvic, menstrual
or premenstrual pain or the worst pain experienced in a specific time frame but the
average general pain intensity in the past seven days. Secondly, some of the items
measuring physical functioning may not detect temporary forms of impairment, for
example: ‘Are you able to go for a walk of at least 15 min?’ . Most people living with
EM would answer in the affirmative and, assuming no chronic pain symptoms are
present, which was the case for the majority of the study sample ( Table 1 ), would
be most impaired in their physical functioning during their menstruation but not
permanently. This has potentially led to an underestimation of the participants’ pelvic
pain intensity and the related physical impairment and highlights the difficulty to
adequately measure the burdens associated with EM with established, non-EM-specific
questionnaires. Nevertheless, the results of both the correlation and regression anal -
yses in this study confirm the notion that pelvic pain is a crucial factor for the
well-being in EM (Brooks et al., 2020; Comptour et al., 2020; Facchin et al., 2017a;
Márki et al., 2017; Netzl et al., 2022; van Barneveld et al., 2021) and demonstrate the
significance of psychosocial factors at the same time. These findings have important
implications for EM treatment as they highlight the necessity of a biopsychosocial
approach to improve both physical and mental health (Netzl et al., 2023).
The cross-sectional correlation analyses have shown that both physical and mental
health in people living with EM suffer if the diagnostic delay is long and pelvic pain
is present and intense. In addition to that, they indicate that surgeries should be
kept at the minimum number necessary to preserve the individual’s health. Notably,
the role of the diagnostic delay was of particular importance for physical health in
the cases where the diagnosis had been made by means of surgery. A potential
explanation for this finding might be that in most cases, treatment is only started
after the diagnosis of EM is confirmed and as certain types of EM can only be reliably
diagnosed by means of surgery this may consequently lead to a delay in treatment.
hormonal symptom-oriented treatments, however, could already be implemented at
the time of a suspected diagnosis based on a thorough anamnesis of pain symptoms
(Mechsner, 2016; Sillem, 2015). The importance of an early start of EM treatment is
underlined by the fact that earlier stages of the disease show higher metabolic activity
and are more reactive to hormonal treatment than advanced stages (Schweppe, 2011).
1168 J. NETZl ET Al.
Furthermore, the cross-sectional analyses have revealed positive associations between
the health outcomes and the household income of participants. The level of income
is one of the main factors in the calculation of socioeconomic status (l ampert et al.,
2013) and a lower socioeconomic status is generally associated with poorer health
and poorer access to health care (Binder & Rieder, 2014; Donkin et al., 2017; lampert
et al., 2019). Thus, special attention must be paid to the treatment of financially and
socially disadvantaged individuals with EM. As expected, a higher SOC, higher
self-efficacy, higher sexual satisfaction and higher satisfaction with the gynecological
treatment were associated with better physical and mental health. In line with the
presented result on the importance of participants’ treatment satisfaction, previous
research has shown that the patient-doctor-relationship is an important factor in the
well-being of people with EM (Roomaney et al., 2019). Adequate education about the
disease and its treatment options is crucial to improving patient-doctor relationships
and the individual’s trust in the medical system (l ukas et al., 2018). Additionally,
providing individuals living with a chronic illness with disease-specific knowledge can
help protect them from misinformation on the internet (Dinh et al., 2020) and improve
self-efficacy and self-care (Wu et al., 2016). These results suggest that by attending
to psychological and interpersonal factors such as the individual’s SOC, self-efficacy
and sexual functioning, their overall health could be improved.
Included in joint models, sociodemographic, EM-related and psychosocial pre -
dictor variables all significantly contributed to the variance explanation in both
physical and mental health. As expected, the increase in variance explanation for
physical health was greater when EM-related—primarily physical factors with a
focus on pain—predictor variables were included, while variance explanation for
mental health increased particularly strongly when psychosocial predictor variables
were included. By providing these detailed analyses, this study contributes to a
better understanding of the complex associations between physical and psycho -
social factors and subjective health in people with EM. These results illustrate the
necessity and importance of setting individual priorities within a multiprofessional
treatment approach depending on each individual’s current treatment needs and
potential for improvement.
When examining the associations between predictor variables at t1 and physical
and mental health at t2, physical and mental health at t1 were included as covariates
to partialize out the variables’ influence (Reinders, 2006). In the partial correlation
analyses, EM-related variables continued to show significant associations with physical
health at t2. In addition, participants’ satisfaction with the gynecological treatment
was significantly associated with both physical and mental health at t2 both in partial
correlation and regression analyses. Thus, the individual’s evaluation of the gyneco -
logical treatment can be assumed to be a key factor in their long-term well-being
(Kundu et al., 2015).
By including physical and psychosocial factors as predictor variables and health as
dependent variable, the multivariable models in this study assumed health to be a
consequence of these factors. Thus, the multivariable models were consistent with
previous albeit cross-sectional studies (Facchin et al., 2015; Márki et al., 2017). however,
the associations between the analysed constructs in this study are more complex and
probably not unidirectional: It is very likely that both physical and mental health also
PSyChOl OGy & hEAl Th 1169
have an impact on physical, psychological, social and sexual factors and that these
factors themselves are interdependent and influence each other as well. Thus, the
possibility of health influencing physical and psychosocial factors needs to be
acknowledged.
There are some limitations to this study. First, the drop-out rate between the two
survey points was quite high with less than a third of the initial participants com -
pleting the questionnaire at t2. Sample n_t2, however, was tested for a potential
attrition bias against those participants who only completed the questionnaire at
t1 ( Table 1 ) and as the two groups did not differ in any of the variables included
in the analyses, the results of these tests were acceptable to continue with the
planned analyses. To test for attrition bias, t-tests were used, which are reasonably
robust with differing sample sizes, especially with large samples and equal variances
in the test variables (Zimmerman, 1987), both of which were the case. The main
reasons for dropping out between the two survey dates were, on the one hand,
that the survey was comparatively long as it comprised several questionnaires, and,
on the other hand, that we were not allowed to ask for participants’ contact infor -
mation directly for data protection reasons. At the end of survey date t1, participants
were asked to send an e-mail to the study team to receive the browser link to
survey date t2. Additionally, there was no intervention between the two survey
points and no major differences were observed between the health outcomes at t1
and t2. Moreover, this study only included two survey points, whereas a reliable
statement about the stability of a construct would benefit from at least three survey
points to account for measurement errors and ceiling effects. It should be noted,
that the data were collected during the COVID-19 pandemic, whose potential impact
on physical and mental health was not considered. In addition, not all statistical
assumptions of the multiple linear regression analysis were met (Appendix B). Finally,
participants who did not identify as female and responded to the survey were
excluded to avoid bias in the data. Their participation, however, deserves attention
as transgender and non-binary individuals face health disparities and have an
increased risk for physical and mental health problems in general (Pulice-Farrow
et al., 2021). Transmasculine or non-binary persons suffering from a gynecological
and thus gendered disease such as EM may experience an increase in their gender
dysphoria as a consequence, which can lead to a deterioration in their state of
health (Pulice-Farrow et al., 2021).
Despite the high drop-out rate, one advantage of this study is the large sample
size. A thorough exploration of the associations between the putative predictor
variables and physical and mental health was presented. In this context, the large
sample is particularly advantageous, as it can be assumed that the reported effects
are quite stable. The selection of the putative predictor variables was both based
on previous research (Brooks et al., 2020 ; Comptour et al., 2020 ; Facchin et al.,
2017a , 2017b ; Márki et al., 2017; Netzl et al., 2022; Roomaney et al., 2019; van
Barneveld et al., 2021 ) and was consistent with a biopsychosocial approach to
health (l arsen, 2022 ) by incorporating physical and psychosocial variables. The
psychosocial variables considered in this study were SOC, self-efficacy, sexual sat -
isfaction and satisfaction with the gynecological treatment, all of which emerged
as important for the participants’ health from the analyses. The longitudinal study
1170 J. NETZl ET Al.
design is the main strength of this study. Incorporating the health outcome from
t1 in the longitudinal analyses enhances their validity and attests to the stability
of the identified associations. With this study, PROMIS Profile 29 data from a big
sample of cis women living with EM are provided, which can be used as reference
and comparison scores worldwide.
4.1. Conclusion
The findings of this study confirm that pelvic pain is a key factor in the well-being
of people living with EM and that shortening the diagnostic delay remains a signif -
icant goal in EM care. Additionally, the presented results demonstrate the relevance
of psychosocial factors for both physical and mental health in EM and highlight the
necessity of mental health care in EM management. They suggest that by attending
to psychological and interpersonal factors such as the individual’s SOC, self-efficacy,
sexual satisfaction and treatment satisfaction in addition to treating their pelvic pain
symptoms, their overall and long-term health could be maintained and improved.
Moreover, special attention should be paid to the gynecological care of financially
and socially disadvantaged individuals. Future EM research and care should strive for
an interdisciplinary, biopsychosocial perspective to adequately meet the challenges
posed by this complex disease and its consequences.
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Appendix A. Descriptive statistics of the 7 PROMIS profile 29 scales
Table A1. Descriptive statistics of the 7 PRoMIs health domains at t1 of the complete sample at
t1 ( n = 723).
PRoMIs Profile 29 scale Min Max M ± sD Mdn (P25, P75) t -score M ± sD
Physical functioning 7 20 17.26 ± 2.76 18.00 (16.00, 20.00) 46.91 ± 7.28
a nxiety 4 20 10.91 ± 3.80 11.00 (8.00, 14.00) 60.95 ± 8.22
Depression 4 20 11.34 ± 3.85 12.00 (8.00, 14.00) 60.92 ± 7.54
Fatigue 4 20 15.14 ± 3.76 16.00 (13.00, 18.00) 63.47 ± 8.31
sleep disturbance 4 20 12.52 ± 3.93 12.00 (9.00, 15.00) 55.17 ± 8.31
a bility to participate in social
roles and activities
4 20 11.59 ± 3.49 12.00 (9.00, 14.00) 43.76 ± 6.81
Pain interference 4 20 11.73 ± 4.56 12.00 (8.00, 15.00) 60.14 ± 8.31
general pain intensity a 0 10 5.00 ± 2.60 5.50 (3.00, 7.00) –
aNo t -score available for the general pain intensity item.
Appendix B. Statistical assumptions of multiple linear regression
analysis
The assumptions of no multicollinearity and uncorrelated residuals were met by all four models
(VIF .10, Durbin-Watson test = 1–3). The assumption of normally distrib -
uted residuals was met as well with an exception of the longitudinal model for physical health:
In this model, the residuals showed slight deviations from a normal distribution. Partial plots
between the residuals of the outcome variables and each predictor variable and plots of the
standardised residuals against the standardised predicted values indicated not perfectly linear
relationships and heteroscedasticity. The plots of the standardised residuals against the stan -
dardised predicted values of the regression models for mental health at t1 and t2, however,
were satisfactory so that homoscedasticity could be assumed.
Appendix C. Results for the subsample of participants who had
received the EM diagnosis by laparoscopy ( n = 624)
Table A2. c ross-sectional correlation analyses between physical and mental health scores at t1
and putative predictor variables including only those participants who had received the eM
diagnosis by laparoscopy ( n = 624).
Putative predictor
variable
Physical health t1 a Mental health t1 a
N r p N r p
s ociodemographic variables
Income 620 .166 <.001 620 .171 <.001
eM-related strain
on the relationship
467 −0.215 <.001 467 −0.343 <.001
eM-related variables
Diagnostic delay 609 −0.133 <.001 609 −0.087 .033
Number of
surgeries
622 −0.174 <.001 622 −0.084 .037
Number of pelvic
pain types
624 −0.409 <.001 624 −0.319 <.001
Pelvic pain intensity 624 −0.431 <.001 624 −0.379 <.001
Pelvic pain days
per month
624 −0.455 <.001 624 −0.350 <.001
Psychosocial variables
soc l -9 624 .338 <.001 624 .633 <.001
aKsU 617 .292 <.001 617 .388 <.001
KFsP-F – sexual
satisfaction
604 .081 .045 604 .151 <.001
FIPs 600 −0.335 <.001 600 −0.342 .05).
PSyChOl OGy & hEAl Th 1177
Statistical assumptions of multiple linear regression analysis
The following descriptions refer to the regression models presented in Table A3. The assumptions
of no multicollinearity and uncorrelated residuals were met by both models (VIF .10, Durbin-Watson test = 1–3). The assumption of normally distributed residuals was met
by both models as well. Partial plots between the residuals of the outcome variables and each
predictor variable and plots of the standardised residuals against the standardised predicted val -
ues indicated not perfectly linear relationships and heteroscedasticity. The plots of the stan -
dardised residuals against the standardised predicted values of the regression model for mental
health at t1, however, were satisfactory so that homoscedasticity could be assumed.
Table A3. Results of the cross-sectional multiple regression analyses for the outcome variables
physical health at t1 and mental health at t1 including only those participants who had received
the eM diagnosis by laparoscopy ( n = 624).
c oefficientsb
o utcome variable Predictor variable a B (s td.-error) β pb 95%-cI b
Physical health t1 c c onstant 46.57 (2.86) <.001 40.95, 52.20
Income 0.24 (0.15) .06 .116 −0.06, 0.54
eM-related strain on
the relationship
−0.01 (0.02) −0.03 .450 −0.05, 0.02
Diagnostic delay −0.11 (0.05) −0.08 .033 −0.21, −0.01
Number of surgeries −0.68 (0.26) −0.10 .010 −1.19, −0.17
Number of pelvic pain
types
−0.15 (0.36) −0.03 .687 −0.85, 0.56
Pelvic pain intensity −0.09 (0.03) −0.18 .008 −0.15, −0.02
Number of pelvic pain
days per month
−0.22 (0.04) −0.25 <.001 −0.30, −0.13
soc-l9 1.04 (0.37) .14 .005 0.32, 1.76
aKsU 1.46 (0.54) .12 .007 0.39, 2.53
KFsP-F - sexual
satisfaction
0.06 (0.07) .04 .398 −0.07, 0.18
FIPs −1.22 (0.34) −0.15 <.001 −1.88, −0.56
Mental health t1 d c onstant 31.29 (2.09) <.001 27.19, 35.40
Income 0.06 (0.11) .02 .588 −0.16, 0.28
eM-related strain on
the relationship
−0.04 (0.01) −0.10 .007 −0.06, −0.01
Diagnostic delay −0.03 (0.04) −0.03 .437 −0.10, 0.04
Number of surgeries −0.12 (0.19) −0.02 .525 −0.50, 0.25
Number of pelvic pain
types
0.21 (0.26) .05 .421 −0.30, 0.73
Pelvic pain intensity −0.09 (0.02) −0.21 <.001 −0.13, −0.04
Number of pelvic pain
days per month
−0.10 (0.03) −0.14 .001 −0.16, −0.04
soc-l9 3.16 (0.27) .49 <.001 2.63, 3.68
aKsU 0.45 (0.40) .05 .260 −0.33, 1.23
KFsP-F - sexual
satisfaction
0.03 (0.05) .02 .512 −0.06, 0.13
FIPs −0.91 (0.25) −0.13 <.001 −1.39, −0.42
Note. linear hierarchical regression analyses (enter method).
at he number of participants without missing values in the respective predictor variable and included in the pairwise
analysis can be found in table a2 , column N.
bB = unstandardised beta coefficient. s td. error = standard error of the unstandardised beta coefficient. B = standardised
coefficient. p = p-value, probability. 95%- cI = 95% confidence interval for the unstandardised beta coefficient B.
cstep I: sociodemographic variables, R2 = .073, p <.001, F(2, 448) = 17.61, p <.001; step II: sociodemographic and
eM-related variables, R2 = .302, p <.001, F(7, 443) = 27.38, p <.001; step III: sociodemographic, eM-related and
psychosocial variables, R2 = .380, p <.001, F(11, 439) = 24.45, p <.001. t he degrees of freedom are based on the
minimum pairwise n.
dstep I: sociodemographic variables, R2 = .145, p <.001, F(2, 448) = 38.06, p <.001; step II: sociodemographic and
eM-related variables, R2 = .260, p <.001, F(7, 443) = 22.26, p <.001; step III: sociodemographic, eM-related and
psychosocial variables, R2 = .532, p <.001, F(11, 439) = 45.29, p <.001. t he degrees of freedom are based on the
minimum pairwise n.