Title: A thematic synthesis of qualitative studies and surveys of the psychological experience
of painful endometriosis
Version: 2 Date: 06 Dec 2023
Reviewer's report:
GENERAL COMMENTS
The aim of the review is to analyse the nature of distress and the psychological models of pain
in women with symptomatic endometriosis. This is an extremely important topic which is often
overlooked in endometriosis research. However, the lack of attention to such topic represents
a caveat which limits a better understanding of how psychotherapeutic interventions may be
of aid in this population. Despite much has been said in the recent years regarding the need
to implement hormonal treatment for endometriosis with psychotherapy, the fact that clinical
research in this field is mainly carried out by gynaecologists has limited our knowledge regarding
the psychological aspects of this disease. This review aims to be an invitation for experts in
psychology and psychotherapy to broaden our knowledge by implementing the literature, and
an invitation for gynecologists to open to such knowledge.
The review is well conducted and provides interesting insights. However, the fact that the
references of the articles included in the study were not screened in order to check out for
potentially missed-out articles may have limited the number of studies included. I can list at
least one qualitative article on patients’ experience with endometriosis which has been left
out: ‘We needed to change the mission statement of the marriage’: biographical disruptions,
appraisals and revisions among couples living with endometriosis”, Nicky Hudson et al, 2016.
Moreover, very little attention has been given to central sensitization, which is now recognized as
a contributor to endometriosis-related pain and is tightly connected to psychological wellbeing.
This topic should be addressed more extensively in the manuscript. It would be interesting to
discuss the role of psychological wellbeing in the genesis of central sensitization, as well as
discussing how the recent focus of gynecologists on central sensitization, although representing
a positive step-forward from the outdated concept of somatization, may have shadowed a more
psychological interpretation of the existing tight connection between pain, pain perception and
the psyche.
SPECIFIC COMMENTS
Background:
1) “Endometriosis affects around 1 in 10 women of reproductive age”. This percentage is
quite high. Although prevalence estimates of endometriosis vary among studies, it is generally
accepted that around 5% of the population is affected by the disease.
2) “Typical symptoms include dysmenorrhea, noncyclic pelvic pain, dyspareunia, impaired
fertility, fatigue, bladder and bowel problems”. Infertility is not a symptom and “bladder and
bowel problems” is too generic. Please specify what kind of bladder and bowel symptoms may
be present in these patients.
3) “Pain is not only felt in the pelvis, but can be localized to various other parts of the body, such
as leg, back, or shoulder”. These are rare localizations of endometriosis-pain, which are usually
related to extra-genital endometriosis. Please modify the phrase, explicating that endometriosis-
related pain is adverted in the pelvis and in the lower back in the majority of patients and may
rarely be adverted in the lower limbs or in the shoulder.
4) “Endometriosis can be comorbid with other chronic (persistent) pain conditions, notably
fibromyalgia and myofascial pain”. Endometriosis is associated to many other chronic pain
conditions, named Chronic Overlapping Pain Conditions (COPCs), which are thought to be
due to central sensitization and include, among others, migraine, tension headache, vulvodynia,
interstitial cystitis, chronic lower back pain. Please include these painful conditions and mention
the COPCs.
5) “Access to imaging or surgical diagnosis restricted by social inequalities”. This is not always
the case, please specify that access may be restricted.
6) “Following diagnosis, the focus is often on treating the condition with pain reduction as a
secondary aim”. This is not always the case. Please change “often” with “sometimes” or with
a synonym of “sometimes”. In the recent years there has been a focus on the treatment of
endometriosis-related pain and on the various pain contributors which may play a role, including
psychological comorbidities, central sensitization and myofascial pain. It is now clear that the
magnitude of pain is independent from disease stage and, although in clinical settings this may
not be the case, in research settings much attention has been posed on pain per se.
Results
1) “Six studies each were published in 2020 and 2021, seven between 2016 and 2019, and three in
2022 up to the point of the search”. It would be more accurate to report such data in chronological
order (2016 to 2019, then 2020, 2021 and finally 2022).
2) “All but one, on adolescents up to 25 years old, recruited adults, usually defined as over 18
years, mainly relying on self-diagnosis”. What do the authors mean by self-diagnosis? Did the
patients presume they were affected by endometriosis but had never actually been diagnosed by
a clinician? If so, this should be reported as a major limitation of the study.
3) “Eight contrasting women with endometriosis with women without”. The term “contrasting”
should be substituted with “comparing”.
4) “Pain and its relationship to problems in endometriosis was addressed by three studies”. What
do the authors intend by “problems in endometriosis”? The term “problems” is too generic,
please modify.
5) “Other papers in this sample used an explicit or implicit model of comorbidity of
psychological distress with endometriosis, usually as a consequence but for at least one as part
of ‘somatization’. Sentence not clear, please rephrase.
6) “One or more came from various European countries, New Zealand, Iran, and Brazil”. One
or more is not precise. Please separate the countries which produced only one article from those
which produced more than one.
Discussion
1) “Several surveys used outdated models of ‘somatization’,somatic expresion of  which somatic
expression of psychological distress”. The phrase is incorrect, please adjust.
2) “That show little beyond poor understanding of pain by the researchers”. This phrase may
appear offensive to the cited researchers. Please rephrase.