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Focus group study of endometriosis: Struggle, loss and the medical merry-go-round

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Women with endometriosis experience a range of problems for which they may or may not be adequately supported. This paper reports on one aspect of a study conducted at the Epworth Hospital, Melbourne, to identify the information needs of women facing laparoscopy for endometriosis. A number of focus groups were conducted that provided women with a forum for communicating their experiences of endometriosis and laparoscopy. The findings include the experiences of 61 women who described the lack of support, the struggles and the losses involved in living with endometriosis. By far the worst experience that these women described was the encounter with health professionals and the ways in which their symptoms were trivialised and dismissed. There is a great deal for nurses to learn about the experience of living with endometriosis if they are to support women with this chronic illness in their search for well-being.
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International Journal of Nursing Practice
2003;
9
: 29
Blackwell Science, LtdOxford, UK
IJNInternational Journal of Nursing Practice1322-71142002 Blackwell Science Asia Pty Ltd
91February 2003
396
Focus group study of endometriosis
H Cox
et al.
10.1046/j.1322-7114.2002.00396.x
Original Article29BEES SGML
Correspondence: Professor Helen Cox, Centre for Clinical Nursing
Research, Epworth Hospital, 89 Bridge Road, Richmond, Victoria
3121, Australia. Email: helencox@deakin.edu.au
RESEARCH PAPER
Focus group study of endometriosis:
Struggle, loss and the medical merry-go-round
Helen Cox RN, PhD
Chair of Contemporary Nursing, Deakin University/Epworth Hospital, Richmond, Victoria, Australia
Lorraine Henderson RN
Member, Endometriosis Association (Vic) Inc.,Victoria, Australia
Natalie Andersen RN
Clinical Nurse Specialist, Day Surgery Unit, Epworth Hospital,Richmond, Victoria, Australia
Glenda Cagliarini
Student nurse and member, Endometriosis Association (Vic) Inc.,Victoria, Australia
Chantal Ski PhD
Research Fellow, Deakin/Epworth Centre for Clinical Nursing Research, Epworth Hospital, Richmond, Victoria, Australia
Accepted for publication July 2002
Cox H, Henderson L, Andersen N, Cagliarini G, Ski C.
International Journal of Nursing Practice
2003;
9
: 2–9
Focus group study of endometriosis: Struggle, loss and the medical merry-go-round
Women with endometriosis experience a range of problems for which they may or may not be adequately supported. This
paper reports on one aspect of a study conducted at the Epworth Hospital, Melbourne, to identify the information needs
of women facing laparoscopy for endometriosis. A number of focus groups were conducted that provided women with a
forum for communicating their experiences of endometriosis and laparoscopy. The findings include the experiences of 61
women who described the lack of support, the struggles and the losses involved in living with endometriosis. By far the
worst experience that these women described was the encounter with health professionals and the ways in which their
symptoms were trivialised and dismissed. There is a great deal for nurses to learn about the experience of living with
endometriosis if they are to support women with this chronic illness in their search for well-being.
Key words:
endometriosis, trivialisation, delayed diagnosis, loss, taking control.
INTRODUCTION
Endometriosis is a chronic condition of as yet undeter-
mined origin. It is the second most common gynaecolog-
ical condition, affecting approximately 10% of women in
their menstruating years. It is one of the leading causes of
infertility in women over the age of 25 and it is believed
that approximately 30–40% of infertile women have some
degree of endometriosis.
1
Nurses encounter women with
endometriosis in a variety of settings: community health
centres, schools, GP clinics, day surgery units and surgical
wards. This paper describes a study undertaken by staff of
Epworth Hospital, Deakin University and the Endometri-
osis Association (Vic) which explored the information
Focus group study of endometriosis 3
needs of women having laparoscopy for endometriosis. In
particular, the paper describes the experiences that these
women went through in their journey to be diagnosed and
treated appropriately, rather than focusing on the laparos-
copy experience itself. The purpose of this paper is to
increase awareness of women’s experiences of endometri-
osis and the lack of support for women sufferers. A stark
picture of struggle and loss, trivialisation and dismissal is
presented. Endometriosis is depicted as a chronic condi-
tion that doctors and nurses do not know enough about
and do not manage well. Although the information pre-
sented is most pertinent to doctors, there are important
messages for nurses also. Where nurses aim to give holistic
care, an understanding of the experience of living with
this chronic illness is vital.
Background
In endometriosis, tissue that is usually found lining the
uterus is found elsewhere, generally in the pelvic cavity.
This tissue responds to reproductive hormone cycles,
eventually causing irritation, inflammation and scarring.
Endometriosis can cause a variety of symptoms, particu-
larly pain, and is often quite debilitating.
2
Diagnosis of
endometriosis often takes a long time. The Endometriosis
Association (Vic) conducted a survey of 750 women in
1989 and found that the average time between symptom
onset and diagnosis was over 6years (Wood, R., unpubl.
data, 1992). The survey results indicated that the delay
was partly attributable to difficulty with diagnosis, but
that there was also an attitude among doctors of not taking
women’s complaints of symptoms such as period pain
seriously. Investigations aimed at establishing a physical
cause of such pain are usually delayed and prolonged. In
addition, endometriosis is sometimes not considered to
be a priority health care issue by the medical profession,
despite the high emotional and physical impact it has on
women. It is not seen as a high acuity problem.
The published reports on endometriosis paint a picture
of a disease that women experience as problematic in a
number of areas of their lives. A national survey of 4000
members of the National United Kingdom Endometriosis
Society found long delays to diagnosis (7 years on aver-
age); lives of chronic pain and multiple laparoscopies for
treatment; distress due to infertility; and loss of career
and relationships.
3
The findings suggest a lack both of GP
knowledge of endometriosis and of empathy for sufferers.
In another study that examined GP knowledge, attitudes
and views on diagnosis of endometriosis, knowledge gaps
about possible symptoms were uncovered, and it was
found that older GPs have less knowledge of the condition
than do younger ones.
4
General practitioners themselves
readily agree that they lack knowledge and that they expe-
rience difficulty diagnosing a disease where the symptoms
are difficult to distinguish from other diseases.
In a study by Carlton, women’s experience with GPs
was varied.
3
The study found that, once women sought
help for their symptoms: (i) 41% were referred to a spe-
cialist within 6 months because the GP suspected
endometriosis; (ii) 16% were referred to a specialist
within 6 months to 2years; and (iii) 16% had no diagnosis
after 2 years. Of the 70% who told their GP that they sus-
pected endometriosis, 26% were referred on to a special-
ist immediately. In other words, the GP listened to their
reasons and thought them legitimate. Fifteen percent
were referred reluctantly, and a further 18% were not
referred on because the GP disagreed with their self-
diagnosis. Of concern is that 7% were completely ignored
by their GP.
Similar experiences have been reported in New
Zealand
5
and in the USA
6
with the persistent somatisation
of endometriosis also having been reported in the latter.
Somatisation occurs when a patient is considered to have
underlying psychological factors or conflicts that cause the
symptoms of a disease rather than to have a true physical
disease. According to the
Diagnostic and Statistical Manual
of Mental Disorders
(DSM-4R),
7
somatisation primarily
affects women. Ballweg wrote, ‘an article written by psy-
chiatrists for the
Journal of Family Practice
states that “only a
1h outpatient evaluation is required to make the diagnosis
[of somatisation]”. The result is that a patient is referred to
a psychiatrist or psychologist: practitioners, as Ballweg
notes, who are ‘even less educated about endometriosis
than the referring physician’.
6
In respect to GP empathy, women in the New Zealand
study
5
did not believe doctors are attuned to how the dis-
tress is experienced, why it is of importance, and how it
affects their lives. Participants perceived this results pri-
marily from the doctors’ preoccupation with a largely bio-
medical conception of the disease.
5
When women are eventually diagnosed with
endometriosis, their struggle often continues. It is often
the case that the more they discover about this disease, the
more they fear that they will never be pain-free, be fertile
or have a normal life as no treatment is entirely satisfac-
tory and the disease has a high recurrence rate. Such fears
are not unjustified. Studies have indicated that approxi-
4 H Cox
et al.
mately 20% of women will have a recurrence of their
symptoms of endometriosis within 12 months of treat-
ment, regardless of the type of treatment received, and a
further 50% will have a recurrence within 5 years.
8,9
The
longer a woman must deal with the symptoms of and
treatment for endometriosis, the more likely it is she will
feel overwhelmed and powerless.
9
The current study
Endometriosis is diagnosed by investigative laparoscopy
and one of the treatment options is operative laparoscopy.
Both investigative and treatment laparoscopies are gener-
ally done in day surgery units. The Day Surgery Unit at
Epworth is increasing activity at a rate of 20% per year,
with a throughput that was 150% higher in 2000 than it
was in 1995. Over the 12 months of 2000, 685 patients
per month received treatment.
10
Gynaecology is one of
the major specialty areas using the Day Surgery Unit.
Monash IVF operate from Epworth and Epworth also runs
an Endometriosis Clinic in conjunction with Endometri-
osis Association (Vic) Inc. As a direct consequence, the
Day Surgery Unit has increasing numbers of women
undergoing gynaecological procedures for endometriosis.
They form a growing consumer group.
METHODS
This study used both qualitative and quantitative methods,
with a survey and focus group designed to determine con-
sumer needs for information related to day surgery for
endometriosis-related problems. A total of 1031 surveys
were sent to women who had been diagnosed with
endometriosis through the Endometriosis Association
(Vic) Inc. membership and the Epworth Endometriosis
Centre database. A 65% response rate was achieved. Of
the survey respondents, 61 women also contributed to
focus groups, either in person or by telephone (for those
who lived interstate or in rural locations where there were
insufficient numbers for a group meeting, but where
women were adamant that they wanted their voices heard
in this matter). Focus group outcomes are reported in this
paper.
Focus groups
Five focus groups were held to further explore issues
identified in the survey. Women were invited to add their
opinions regarding what information they would like to
receive or contribute about endometriosis, including but
not restricted to (i) the nature of the disease; (ii) their
experience of living with endometriosis; and (iii) their
experience with diagnosis and treatment.
The study leader, Helen Cox, acted as facilitator for
each focus group. At each of the focus groups a member
of the Study Steering Committee representing the
Endometriosis Association was present as a support per-
son. It became evident at the first focus group that the
women had undergone quite traumatic experiences: some
became distressed during discussions and two required
debriefing following the meeting. The telephone inter-
views, in particular, had to be managed with a great deal
of sensitivity and opportunities for debriefing were
offered at the end of the meetings and telephone calls to
be sure that no one was left unsupported.
The focus groups were audiotaped and transcribed ver-
batim. In addition, the study leader took notes during
each group and kept a diary for later reflection. Tapes were
listened to several times and transcripts read and re-read
by the study leader. Themes were identified and then
checked to be sure they had emerged from the data rather
than been forced on the data. The transcripts were then
re-read for illustrations of the themes. At the end of this
process, the data analysis was given to the other members
of the study team who had attended the focus groups so
that they could comment and was also mailed to the par-
ticipants for validation. The majority of these women indi-
cated that the thematic analysis was true to their
experience.
RESULTS AND DISCUSSION
The demographics of the focus groups are provided in
Table1. It needs to be stated at the outset that the women
in the focus groups may represent a skewed sample, as all
had experienced a long history of struggle both with the
disease and with treatment. Many who were members of
the Endometriosis Association joined because of their
need for ongoing support and advice. It may be that those
who chose not to participate in focus groups did not share
this experience of trauma. Nevertheless, the results of the
survey, along with the experiences of the women in the
focus groups, highlight a number of problems. These
problems are discussed under the three key themes that
arose from the data: ‘Living with endometriosis’, ‘The
doctor trail’ and ‘Taking control’.
Living with endometriosis
Although this study had a particular focus on day surgery,
the majority of women in the focus groups wanted to
Focus group study of endometriosis 5
talk about what it was like to live with endometriosis
broadly. Indeed, each focus group could have run for
much longer, such was the need of the women to tell of
the trauma, distress and anger of not being taken seri-
ously. Two subthemes could be identified under the theme
of living with endometriosis: ‘The long struggle’ and
‘Depression’.
The long struggle
Most of the women had been living with endometriosis
for many years. In some cases there was a significant gap
(i.e. 3.8years average from survey data) between the
onset of symptoms and seeking help. Some of the women
explained that their experience of pap smears had been
extremely painful and made them reluctant to seek med-
ical advice that would no doubt require a pelvic examina-
tion. Others said that they found intercourse painful and
were embarrassed to discuss such personal issues with
anyone. Some said they guessed that they might have
endometriosis but when they read a bit about it, they
became scared and decided they did not want to know.
Yet others had been convinced by their mothers, aunts,
teachers or others that painful periods were normal, and
no one had made any association with other symptoms
they were experiencing to connect them to a bigger
picture.
Many of the women had experienced symptoms as
adolescents, that is, in the 10–16 years age range. They
had been through the struggle of the doctor trail, of
parents who were unsympathetic and who felt that this
was ‘a woman’s lot’, particularly if their mother and
grandmothers had experienced painful periods also. The
symptoms of endometriosis pervaded these women’s
lives, affecting everything from their work to relationships
to future plans for conception. Women told of losing jobs
because of having to take too much sick leave. A number
of women reported marriage breakdown because it was so
hard for partners to live with the constancy of the disease.
Most women indicated they struggled to lead normal
lives, and not to let this disease take over their sense of
self.
Depression
A serious problem for many sufferers of endometriosis is
the development of depression. One young woman told
the group that she had been diagnosed as suicidal depres-
sive, and others had thought of suicide at some time. Many
women indicated that the struggle is compounded by
workplace discrimination issues and by being judged a
hypochondriac by family members: ‘always ill with some-
thing!’ Marriage breakdown and loss of partners and
friends is serious. The majority of sufferers indicated they
felt alone in a hostile world since the health professionals
who could legitimise their symptoms were dismissive of
them and it seems that it seems that the damage to self-
esteem done by the disbelief of health-care professionals is
quite significant. A large number of the women reported
feeling worthless and hating being compared to other
women who are able to manage monthly periods and get
on with life.
Those women whose endometriosis had rendered them
infertile indicated they resented the judgement that
women with no children are not real women, that they
have failed in life’s purpose. One woman said she felt
angry at the current Australian Federal Government’s
‘baby bonus’ for women with new babies, stating that her
tax is rewarding women for doing the very thing that has
been taken from her. She considered that Government
resources should also be put to use in the area of research
and treatment of endometriosis.
Table 1
Focus group demographics (
n
=
61)
Variable
n
Age
20–24 5
25–29 10
30–34 19
35–39 9
40–44 9
45–49 6
50–54 2
55–59 0
60–64 1
Location
Victoria
City 44
Regional 4
Rural 4
Interstate
Qld 1
NSW 6
SA 2
6 H Cox
et al.
The doctor trail
Almost every woman spoke at length of the years spent
‘doctor shopping’ to locate a doctor who would be sym-
pathetic to her plight, who would listen and believe her.
The subthemes that arose under this main theme were ‘GP
trauma’ and ‘The specialist/non-specialist gynaecologist’.
GP trauma
Four women spoke about dealings with sensitive GPs. This
was unusual because, in the main, women spoke of diffi-
culties encountered with GPs. One woman told of the 12-
year trail she had been on before she found a GP who
would take her complaints seriously and not dismiss her
symptoms as period pain and something she just had to
put up with. Another told of the more than 100 GPs she
had visited in the same search, and always, she said, she
ended up feeling ‘the victim of their disbelief and trivial-
isation’. Almost all women had experienced doctors who
told them they were ‘too young to have endometriosis’.
One woman related a history of severe pain even while in
early high school. Her GP told her repeatedly that it was
‘in my head’ and it was not until she was 21 years of age
that she was diagnosed with endometriosis. Sometimes
women recalled the questions that they had been asked,
and their impression was that GPs did not ask the right
questions, so that the reality of their situation was not
uncovered. Some women expressed surprise that the
female GPs they had consulted were not any more helpful
than the male GPs. One female GP who knew that her
patient had been diagnosed and treated for endometriosis
said, when told the symptoms were coming back, that this
was ‘highly unlikely’. Indeed, the patient’s endometriosis
had returned and further surgery was required.
Women told of how doctors refused to give referrals
because they simply did not believe them. In one instance,
a young woman whose mother had endometriosis sug-
gested to her GP that she too might have symptoms of the
disease. She was told it was highly unlikely, and her GP
was reluctant to refer her on to a specialist. She was told
‘let’s see what happens’, and she put up with her symp-
toms for many years before finally insisting on being
referred to a specialist. The specialist diagnosed her with
stage 4 endometriosis and told her that this meant
endometriosis had ‘glued her insides together in a chaotic
mess’, with the result that she was required to undergo
quite radical surgery.
Another young woman who had complained of symp-
toms for 2 years was told to settle into her new marriage,
get her life together and come back in 12 months. This
‘getting married and having kids’ attitude to solving
gynaecological problems appears widespread among GPs.
If there are benefits of pregnancy for women with
endometriosis, these were not explained to participants of
the focus groups, who indicated they felt fobbed off. Par-
ticipants expressed that they sensed there is an attitudinal
problem that GPs generally have toward ‘women’s
problems’.
The specialist/non-specialist gynaecologist
Whether or not they had undergone a long journey to be
referred to a specialist, the majority of women from the
focus groups did not necessarily find their problems with
doctors to be over. In many cases, gynaecologists them-
selves had no specialised knowledge of endometriosis.
One woman said that her surgeon ‘burned bits of
endometriosis’ during laparoscopy, but did not persist
with the diathermy, considering it to be too severe a treat-
ment. However, the gynaecologist did not refer the
woman to an expert, so there was no further follow up of
this woman and her persisting symptoms. Some of the
women from the focus groups said they had undergone
quite radical surgery without any of it making a difference
in the longer term to their physical symptoms, and sub-
sequent consultations with endometriosis specialists left
them in some doubt that the radical surgery had been the
right treatment decision. In a number of instances, the
women felt that gynaecologists who did not specialise in
endometriosis shared the GP’s attitude of dismissing their
symptoms and trivialising their problems.
Some women spoke of the blunt way in which they
were told that they had endometriosis. They said there
appeared to be no empathy from some doctors and the
women indicated that they felt that this was related to the
doctors’ lack of detailed knowledge about the condition,
how severe symptoms can be and the ramifications for the
future lives of these women and their partners. One
woman who consulted a gynaecologist in a regional area
said that this gynaecologist, a woman, told her that her
choice would be ‘to become a lactating female, meno-
pausal or turn into a man’—and this at the age of 19. She
was given no information and no options, and eventually
moved to the city to try to find help to better manage her
life.
Having mentioned these problems, the women’s com-
ments indicate that there was nowhere near the level of
discontent with gynaecologists as there was with GPs.
Focus group study of endometriosis 7
Nevertheless, it was with great emotion that many of the
women spoke of finding gynaecologists who had specialist
expertise in endometriosis. The relief of being diagnosed
and of having someone able to explain their symptoms,
the nature of the disease and the treatment options was
tremendous and lifted a serious burden from the minds of
these women.
Taking control
Women in the focus groups indicated that they took seri-
ously the decision to have an operation and that they liked
to be in control of what happened to them when possible.
One woman said that she had no intention of being ‘cut up
again’. She indicated that she feared adhesions developing
that would prevent pregnancy, and at the time of the focus
group was intensely focused on her fertility. This woman
indicated that she felt cheated and was resisting any sug-
gestion of succumbing to the disease, ‘normal’ treatments
(hysterectomy) or anything that might suggest the disease
could win over her desire to have a child.
A number of women who participated in the focus
groups managed, despite the odds, to take back control
of their lives. These women indicated that this was a
long and difficult road, and that they recognised not all
women would be able to achieve this. These women also
indicated the personal struggle they had had to go through
to gain strength for battle, and that they wanted women
who followed them not to have to learn to be strong
through such adversity. The sub themes in this category
were ‘Undoing the damage’, ‘Setting goals’ and ‘Becoming
assertive’.
Undoing the damage
The damage that occurred through GPs not listening, not
taking symptoms seriously, trivialising these women’s
experiences and telling young women that their symp-
toms were ‘in their heads’ was deep and serious. From
women’s accounts, the emotional backlash seemed to take
a great deal of time and effort to undo—if indeed it was
ever undone. The women who had learnt to take control
reported that they had done so because they had no choice
in the end. They had to force doctors to listen, force doc-
tors to refer them to the gynaecologist of their own
choice, force employers to be just in their dealings with
them, and force their partners and friends to listen and to
be compassionate. They got angry. Having decided that
they would no longer put up with being treated badly,
they sought information. Armed with as much informa-
tion as possible, they then made their demands and
insisted on being heard. Where they were still not listened
to, they switched GPs or specialists; they demanded good
care and kept up the search until they got what they
needed. A number of women said that after locating the
right consultant, they returned to their GP only for
scripts. They were clear about what they wanted, asked
for it and left—they never discussed what was happening
in their care or treatment, having decided that there was
no point in consulting a GP for this aspect of their health
care.
Setting goals
Each of the women in the focus groups indicated that she
set a particular goal, or goals, for herself. For most, the
main goal was to be drug free but at the same time receive
good pain management. Another woman set her goal as
getting off ‘the medical roundabout’; she indicated that
she did this through natural therapies, diet and spiritual
healing. She said that endometriosis had destroyed her
relationships and changed her life, and that she could see
ongoing surgery would produce more of the same. When
doctors indicated that she needed radical surgery to
‘remove everything’, she decided that she had had
enough. At the time of the focus group she stated that
most of her symptoms had subsided, and she was manag-
ing life well, in general.
Becoming assertive
Analysis of the women’s responses showed that one of the
things that started women on the road to assertiveness was
recording their symptoms, locating their patterns and
realising that their symptoms were cyclical and had a basis
in physiology. Their statements revealed how they first
began to believe what they were feeling and started to rea-
lise that they did really know their own bodies and could
trust the judgements that they were making about what
was happening to them. This led the women to start
rejecting what they were being told by those who were
dismissive of them. They said that now they could name
their experience and that previously they were being bul-
lied, and further explained that emotionally they grew
stronger with this knowledge.
The women expressed that realising they were ulti-
mately in charge was liberating. This is not to say that life
had become easier, but that they no longer put up with
treatment that was less than they required and demanded.
An outcome of this in the focus groups was the recogni-
8 H Cox
et al.
tion by women that they could be responsible for some of
the ‘spreading of the word’, ensuring increased public
awareness and encouraging young women to seek help
rather than thinking that their pain was period pain and
therefore ‘normal’. Some women spoke of how they could
play a role in educating their GP by passing on useful
information they had located, thus helping other women
to get better care.
DISCUSSION
The information gleaned from the five focus groups high-
lights a number of issues for women with endometriosis.
These can be grouped as:
1.
The difficulty in locating information about
endometriosis and the need for information, not only for
women who have or might have endometriosis, but for
partners, employers and others.
2.
Lack of knowledge and negative attitudes of GPs and
non-specialist gynaecologists, and the resultant trauma
and depression experienced by the women.
3.
The difficulty of learning to take control of their lives
and be assertive in relation to communicating with health
care professionals.
The information given by the women in this study pre-
sents a stark picture of marginalisation, loss, struggle and
grief, and it is a picture that is similar for women in other
countries. Studies in the United Kingdom,
3
New Zealand
5
and the USA
6
have found that women experienced:
(i) delays in diagnosis; (ii) chronic pain; (iii) multiple
laparoscopies and infertility; and (iv) loss of career and
relationships.
Other studies have reported similar experiences
regarding GP knowledge of and attitudes towards
endometriosis. The somatisation experienced by women
in Ballweg’s study was perhaps more extreme than that
experienced by women in the present study, but the triv-
ialisation and dismissal of their problems was the same,
and sometimes occurred for similar reasons.
4
In addition, GPs’ empathy towards sufferers has been
called into question in this study. Montague and Wood
found that only a minority of doctors held negative,
woman-blaming attitudes towards patients with
endometriosis, with most demonstrating a sympathetic
understanding of the broad range of problems and their
implications for women with the disease.
4
It is worth reit-
erating, since this is not what women in this study
reported, the possible skewed nature of the composition
of the focus groups. Women who had experienced signif-
icant problems with doctors may well have been the
majority of those prepared to attend the focus groups spe-
cifically because they wanted to voice their frustration,
and they may have been a minority in respect of the
respondents to the survey.
Much of what was uncovered in these focus groups can
be alleviated with knowledge, understanding and compas-
sion. The information presented in this paper is important
for nurses in that it will help them to gain an understand-
ing of what many women with endometriosis go through
in their journey to diagnosis and treatment. It is hoped
that such understanding will encourage nurses to be
compassionate when dealing with these women in any
context.
Future directions
The information collated from the focus groups strongly
suggests that we have only scratched the surface of difficult
and, at present, apparently unavoidable experiences for a
number of women. The women in this study were ada-
mant about the need for health professionals to be better
educated about endometriosis, and for the production and
dissemination of information not only to women with
endometriosis but also to teachers, employers, partners
and family members.
The researchers have taken a number of positive steps
in response to the findings of this study. Among these are:
1.
The production of a booklet about endometriosis, to
be distributed via the Endometriosis Association (Vic).
2.
Journal articles written to target GPs and
gynaecologists.
3.
Information distributed through GP division
newsletters.
4.
Targeted conference presentations to provide feedback
of results to relevant professional groups and to consumer
groups.
Further research studies are planned, particularly in
the areas of quality of life, and developing partner/
employer knowledge about endometriosis and empathy
towards sufferers.
ACKNOWLEDGEMENTS
The Commonwealth Department of Health and Aged
Care Consumer Focus Strategy aimed to strengthen the
role of consumers in health service planning, delivery,
monitoring and evaluation. To document good practice in
consumer involvement and to demonstrate, promote and
refine resources developed under the Strategy, a series of
Focus group study of endometriosis 9
small grants were provided to local partnerships of con-
sumers and health providers.
This study was funded by the Department of Health
and Aged Care as part of the Consumer and Provider Part-
nerships in Health (CAPPS) Project series, which were
designed to further develop the evidence base underpin-
ning effective consumer participation.
The authors also acknowledge Margo Sheahan, the
Care Evaluation Coordinator at Epworth Hospital, and
the members of the CAPPs Study Steering Committee, in
particular Ms Terri Punshon, the Facilitator and the Exec-
utive of Epworth Hospital, who supported this study in its
entirety.
REFERENCES
1Endometriosis Association (Vic).
What Is Endometriosis?
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... 20,21,[23][24][25][28][29][30]33,[36][37][38]40,41,43,45,[47][48][49][50][51][52]54,55 The patients recounted instances where healthcare professionals labeled their pain symptoms as a natural aspect of being a woman 24,25,36,38,47,50,54 and suggested that women should anticipate experiencing and coping with pain. 20,[23][24][25]28,35,36,38,51,54 "But all doctors have always said was that it is a super normal thing … if the doctor says it is normal, then it is normal." 52 ...
... This may result in "doctor-shopping" to seek empathetic providers. 20,23,31,[35][36][37] Healthcare professionals, for their part, may experience anxiety and uncertainty due to lack of training in communication skills or addressing psychosocial issues. 50,58,60 In this meta-synthesis, women reported negative experiences of healthcare professionals normalizing their pain. ...
Article
Full-text available
Introduction Endometriosis is the leading cause of chronic pelvic pain among women. The pain associated with endometriosis significantly impacts various aspects of patients' quality of life. A notable void in the literature is the absence of a systematic review exploring pain communication between patients with endometriosis and healthcare professionals. Hence, the aim of this qualitative systematic review was to synthesize findings on how patients with endometriosis experience communicating with healthcare professionals about pain and how healthcare professionals experience these interactions. Material and Methods A systematic literature search was conducted related to patients with endometriosis and pain communication in CINAHL PLUS with full text and MEDLINE (via EBSCO host) on May 12, 2023, and updated January 26, 2024. Searches were supplemented by backward searching reference lists and forward searching citations of included reports in Scopus and Google Scholar. The review was guided by the four‐step meta‐synthesis methodology by Sandelowski and Barosso. Critical appraisal of included studies was conducted using Critical Appraisal Skill Program (CASP). Findings were analyzed thematically, using the approach described by Thomas and Harden. The meta‐synthesis was based on a registered protocol in PROSPERO (CRD 42023425430), and the study is reported adhering to the PRISMA 2020 checklist. Results Overall, 37 reports published from 2003 until 2023 contributed to the review, including 4842 participants. Through thematic analysis, we developed the following themes: “Navigating the double burden,” “Lack of mutual understanding,” and “The complexities of conveying pain.” Conclusions The communication of pain between patients with endometriosis and healthcare professionals is complex, encompassing patterns of disbelief, normalization, and psychological attribution. Engaging in discussions about pain presents diverse challenges stemming from insufficient communication skills and assessment tools. Further research is warranted to comprehensively explore the perspectives of both patients and healthcare professionals, aiming to devise strategies that enhance communication and patient care.
... Individuals with a diagnosis of endometriosis associate the disease with its negative impact on their romantic and sexual relationships (Bernuit et al. 2011;Moradi et al. 2014;Cox et al. 2003c), education opportunities (de Graaff et al. 2013;Moradi et al. 2014;Huntington and Glimour 2005), work opportunities and income (de Graaff et al. 2013;Moradi et al. 2014;Nnoaham et al. 2011) and psychological well-being (Cox et al. 2003a;Moradi et al. 2014;Whelan 2007). In addition, those dealing with adenomyosis report burdensome self-care, hygiene (Nelsen et al. 2018) and fatigue (Huang et al. 2021;Nelsen et al. 2018). ...
... Studies on endometriosis have also emphasized the normalization, the dismissal and the trivialization of menstrual pain and irregularities by doctors, which result in patients feeling ignored and disbelieved (Ballard et al. 2006;Cox et al. 2003a;Denny 2009;Jones et al. 2004). As a consequence, patients are commonly misdiagnosed and/or referred to inappropriate secondary care (Ballard et al. 2006;Denny and Mann 2008;Jones et al. 2004). ...
Article
Full-text available
The proposed research will explore how Italian feminist digital activists and advocates address issues surrounding endometriosis, adenomyosis, vulvodynia and painful bladder syndrome on Instagram. It emerges that activists and advocates aim to foster the circulation of counter-discourses on these conditions, which we identified as explicitly or implicitly informed by feminist practices and discourses with the purpose of tackling the institutional and mainstream dismissal of their pain and experiences. This is by simultaneously distancing and resignifying the notion of fragility in relation to their identities and bodies through mutual support and information sharing.
... These findings and comparison with previous literature highlight that diagnostic delays have remained a persistent issue over the past decade despite advancements and increased awareness. Additionally, it highlights that improvements observed in the 1997 study [40] may not fully reflect the current landscape. ...
Article
Full-text available
Background Endometriosis diagnosis reportedly faces delays of up to 10 years. Despite growing awareness and improved guidelines, information on the current status is limited. Objectives To systematically assess the published evidence on the status of time to diagnosis in individuals with endometriosis, with respect to the definition of time to diagnosis, geographical location and patient characteristics. Search Strategy MEDLINE (via PubMed) and Embase were searched for publications reporting time to diagnosing endometriosis since 2018. No restrictions to population or comparators were applied. All publications were screened by two independent reviewers. Selection Criteria Search results were limited to primary publications of randomised controlled trials, non‐randomised trials and observational studies. Case reports, secondary publications and grey literature were excluded. No restrictions were made regarding language, provided that an English title and abstract were available. Data Collection and Analysis Publications were assessed with respect to time to diagnosis, diagnostic methods, study type, study country and potential bias. Main Results The 17 publications eligible for inclusion in this literature review were all observational studies. The publications reported diagnosis times between 0.3 and 12 years, with variations depending on the definition of time to diagnosis (overall, primary, or clinical), geographical location and characteristics of the included study population. Evidence was of poor to good quality overall. Conclusions Diagnostic delay is still present, primarily driven by physicians, and this review underscores the need for standardised definitions, increased awareness and targeted diagnostic interventions.
... However, aiming for impractical goals that do not reflect realistic limitations can lead to worse psychological outcomes, as well as being financially costly as people try treatments unlikely to ease their symptoms (Eijkholt, 2020). PLWE frequently report feeling hopeless (Calvi et al., 2024;Cox et al., 2003;Whelan, 2007). However, many HPs in the current study discussed how misguided hope could interfere with sound decision-making. ...
Article
Full-text available
Background Endometriosis, a systemic chronic inflammatory condition which has no cure, has a high symptom burden that can negatively impact every facet of life. Given the absence of a gold-standard treatment, the best symptom management regimen in endometriosis is heavily reliant on a patient's values and preferences, making shared decision-making (SDM) vital. However, a comprehensive patient decision aid (PtDA) intervention that could facilitate patient decision-making and promote SDM is lacking in endometriosis, and there is little research on the decisional support needs of individuals with this condition. This qualitative study aimed to explore healthcare professional (HP) perspectives of their clients’ decisional support needs when choosing treatments to manage endometriosis symptoms, with a view to evaluating the need for a PtDA. Methods Australian HPs identified as specialising in endometriosis care (N = 13) were invited to participate in a short interview over the Internet by phone. Questions focussed on perceived facilitators and challenges of decision-making when choosing treatments for endometriosis. Transcribed qualitative data were thematically analysed and verified by multiple coders, using the template approach. Results Four themes were identified: (1) Identifying and setting priorities; (2) HPs’ lack of time and perceived lack of knowledge; (3) Patient-centred care and SDM, including patient capacity; and (4) Decision-making blinded by hope. This is the first known study to explore HPs’ perspectives on patient decision-making challenges in endometriosis. Discussion Findings draw attention to the difficulties people with endometriosis experience when assessing and choosing treatments, highlighting the need for a comprehensive PtDA intervention to support this decision-making.
... Dismissal by HCPs was a highly prevalent theme across women's narratives, and women believed that they were dismissed due to their gender. Similar experiences of symptom dismissal have been reported by women with vulvodynia, endometriosis and chronic pain [21,22,28,29]. It may be possible that men were taken more seriously by HCPs, whilst symptoms reported by women were attributed to psychological factors consistent with gendered norms in chronic pain [22]. ...
Article
Full-text available
Introduction Many people experience persistent symptoms for more than 12 weeks following SARS‐CoV‐2 infection, which is known as post‐COVID‐19 condition (PCS) or Long COVID (LC). PCS can impair people's quality of life and daily functioning. However, there is a lack of in‐depth research exploring the PCS patient journey, as well as gendered aspects of patients' experiences. Methods Nineteen semi‐structured qualitative interviews were conducted with people living with PCS in the United Kingdom (13 women, 6 men). Interviews were transcribed verbatim and analysed inductively using reflexive thematic analysis. Results Five main themes were identified: ‘Symptom dismissal’, ‘Lack of information and support’, ‘Life before and after Long COVID’, ‘Psychological impact’ and ‘Acceptance’. A shift overtime to self‐management of symptoms was evident. These themes represent different stages of patients' PCS journey. Narratives indicated that women highlighted dismissal by healthcare professionals (HCPs), which was not as prominent in men's narratives. In addition, women went into more detail about the psychological impact of PCS compared to men. Conclusion Women with PCS reported symptom dismissal by HCPs, which may have delayed their diagnosis and negatively affected their well‐being. We were not able to explore the experiences of people from non‐conforming gender groups. Raising awareness of these issues among HCPs, particularly general practitioners, could improve patient care in PCS. Patient or Public Contribution Patient and public involvement consisted of people who took part in the interviews and commented on the themes' interpretation and study conclusions.
... Endometriosis is diagnosed in roughly 10% of cis-gender females of reproductive age (Shafrir et al., 2018). Although not always identified as invalidation, clinicians' dismissal or disbelief of patients' symptoms in the context of endometriosis has been extensively documented over the past 20 years (e.g., Authors, 2023; Ballard et al., 2006;Chauvet et al., 2018;Cox, Henderson, et al., 2003;Denny, 2004aDenny, , 2004bDenny, , 2009Denny & Mann, 2008;Facchin et al., 2018;Grogan et al., 2018;Grundström et al., 2018Grundström et al., , 2020Huntington & Gilmour, 2005;Hållstam et al., 2018;Jones et al., 2004;Krebs & Schoenbauer, 2019;Lightbourne et al., 2023;Manderson et al., 2008;Matías-González et al., 2021;Rowe et al., 2021;Wren & Mercer, 2022;Young et al., 2020;Zale et al., 2020). A majority of this work details dissimilarities and consequent feelings of invalidation among patients concerning identity label-specifically, patients believe that their symptoms are abnormal but clinicians do not, or internal cause-specifically, clinicians believe that patients' symptoms are psychological but patients do not (e.g., Ballard et al., 2006;Chauvet et al., 2018;Grogan et al., 2018;Grundström et al., 2018Grundström et al., , 2020Krebs & Schoenbauer, 2019). ...
Article
Full-text available
The aim of this paper is to provide foundational work to standardize the conceptual definition of what I refer to as symptom invalidation by using invalidating environments and illness representations as guiding conceptual frameworks. Mixed deductive-inductive thematic analysis was used to analyze survey responses to an open-ended question gauging an invalidating interaction patients experienced with a clinician among 1038 patients with endometriosis. Dissimilarity in illness representations between patients and clinicians, as perceived by patients, occurred with feelings of invalidation. Invalidation was experienced in relationship to all identified domains of illness representations including how clinicians communicated the diagnosis (identity label), the internal (internal cause) and/or external (external cause) nature of the cause, clinicians’ understanding of the timeline (timeline) and consequences (consequences), and clinicians’ understanding of control over the symptoms via the efficacy of patients (self-efficacy) and coping procedures (response efficacy). Inductive analysis revealed invalidation can also be related to how clinicians communicate judgments of whether patients are presenting with ulterior motives (secondary gains). Clinicians’ actions appear to compound experiences of invalidation by not having symptoms investigated (investigative experiences). Invalidating environments and illness representations serve as effective conceptual frameworks for providing a conceptual definition of symptom invalidation.
... First, stress resulting from the symptoms of EM, which manifest throughout the reproductive life of patients, is recognized as a main factor [29,30]. Indeed, individuals with EM have reported experiencing high levels of stress due to the adverse impact of the symptoms on all facets of life, including relationships, fertility, and work [31][32][33]. Furthermore, EM patients report experiencing more stress levels and a greater negative impact on daily activities compared to women with other forms of pain [34]. ...
Article
Endometriosis (EM) is a gynecological inflammatory disease often accompanied by stress, chronic pelvic pain (CPP), anxiety, and depression, leading to a diminished quality of life. This review aims to discuss the relationship between systemic and local inflammatory responses in the central nervous system (CNS), focusing on glial dysfunctions (astrocytes and microglia) as in critical brain regions involved in emotion, cognition, pain processing, anxiety, and depression. The review presents that EM is connected to increased levels of pro-inflammatory cytokines in the circulation. Additionally, chronic stress and CPP as stressors may contribute to the dysregulation of the hypothalamic-pituitary-adrenal (HPA) axis, depleting the production of inflammatory mediators in the circulatory system and the brain. The systemic cytokines cause blood-brain barrier (BBB) breakdown, activate microglia in the brain, and lead to neuroinflammation. Furthermore, CPP may induce neuronal morphological alterations in critical regions through central sensitization and the activation of glial cells. The activation of glial cells, particularly the polarization of microglia, leads to the activation of the NLRP3 inflammasome and the overproduction of inflammatory cytokines. These inflammatory cytokines interact with the signaling pathways involved in neural plasticity. Additionally, persistent inflammatory conditions in the brain lead to neuronal death, which is correlated with a reduced volume of key brain regions such as the hippocampus. This review highlights the involvement of glial cells in the pathogenesis of the mental comorbidities of EM (i.e., pain, anxiety, and depression) and to discuss potential therapeutic approaches for targeting the inflammation and activation of microglia in key brain regions.
Article
Objective: To provide a contemporary approach to the understanding of the impact and methods for the diagnosis of endometriosis in Canada. Target Population: Individuals, families, communities, health care providers, and health care administrators who are affected by, care for patients with, or manage delivery of services for endometriosis. Options: The diagnosis of endometriosis is facilitated by a detailed history, examination, and imaging tests with providers who are experienced in endometriosis care. Surgical evaluation with pathology confirms a diagnosis of endometriosis; however, it is not required for those whose diagnosis was confirmed with imaging. Outcomes: There is a need to address earlier recognition of endometriosis to facilitate timely access to care and support. Education directed at the public, affected individuals and families, health care providers, and health care administrators are essential to reduce delays in diagnosis and treatment. Benefits, Harms, and Costs: Increased awareness and education about the impact and approach to diagnosis may support timely access to care for patients and families affected by endometriosis. Earlier and appropriate care may support a reduced health care system burden; however, improved clinical evaluation may require initial investments. Evidence: Each section was reviewed with a unique search strategy representative of the evidence available in the literature related to the area of focus. The literature searches for each section of this guideline are listed in Appendix A and include information from published systematic reviews described in the text. Validation Methods: The recommendations were developed following two rounds of review by a national expert panel through an iterative 2-year consensus process. Further details on the process are shared in Appendix B. The authors rated the quality of evidence and strength of recommendations using the Grading of Recommendations Assessment, Development and Evaluation (GRADE) approach. See Appendix C (Table C1 for definitions and Table C2 for interpretations of strong and conditional recommendations). Intended Audience: This guideline is intended to support health care providers and policymakers involved in the care of those impacted by endometriosis and the systems required to support them. KEY MESSAGES: 1. Endometriosis is a common condition affecting millions of individuals in Canada. It impacts quality of life and productivity and carries potential long-term implications on one’s overall well-being. 2. The early identification and diagnosis of endometriosis among those with pain and infertility should be a priority for health care providers and policymakers. 3. A systematic approach to the diagnosis of endometriosis includes a detailed history taking and directed examination. 4. Endometriosis may be diagnosed on imaging. This requires knowledgeable and experienced imaging experts who are familiar with the appearance of endometriosis on ultrasound and/or MRI. 5. Surgical diagnosis of endometriosis requires a systematic approach to evaluate the entire abdomen and pelvic cavity as well as other areas of the body, as directed by symptoms.
Article
Full-text available
What do the following symptoms describe? Pain during menstruation Irregular menses Excessive menstrual bleeding Pain during sexual intercourse Pain in the abdomen (other than during menstruation) Nausea Abdominal bloating Diarrhea Back pain Urinary retention Among other conditions, these sysmptoms may well describe endometriosis. Gynecologists experienced with endometriosis would easily make the diagnosis of probable endometriosis based on this list; however, according to the American Psychiatric Association (APA), these symptoms, taken together or in combination with other physical symptoms not listed here, describe a mental disorder called somatization disorder.
Article
Endometriosis, although associated with a large variety of symptoms, primarily produces pain and infertility; however, the strong correlation with these disorders, along with basic questions as to why endometriosis develops, when does it become a disease status, and why it's associated with symptoms such as pain or infertility, are still not well understood. A better understanding of the relationship between disease and symptoms of endometriosis must be acquired if effective progress in the treatment of pain and infertility related to endometriosis is to be made.
Article
Women who have used the New Zealand health services for chronic pelvic pain have reported problems with diagnosis, communication with the doctor, lack of information, and inappropriate treatment. Six focus groups were conducted in which women talked about their experiences of using the health services for chronic pelvic pain. A discourse analysis of this material provided a conceptual basis for understanding the key dimensions structuring women's experience. Themes of particular concern were that (a) doctors negated the woman's own experience of the pain and its meaning to her and this negation affected her ability to take responsibility for her condition; (b) the medical "extraction" of symptoms through technology overshadows the woman's discursive interpretation of, and voicing of, her symptoms; and (c) the concept of "pelvic pain without organic pathology" implies an absence that becomes filled with the specter of neurosis or psychological problems.
Diagnosing endometriosis: GP's knowledge, attitudes and views on diagnosis Report to the Department of Health and Family Services General Practice Evaluation Program 1997 GPEP project
  • M Montague
  • R Wood
Montague M, Wood R. Diagnosing endometriosis: GP's knowledge, attitudes and views on diagnosis. Report to the Department of Health and Family Services General Practice Evaluation Program 1997 GPEP project. 1997; 358.
What Is Endometriosis? Melbourne: Endometriosis Association
Endometriosis Association (Vic). What Is Endometriosis? Melbourne: Endometriosis Association (Vic), 2000. [Accessed July 2001.] Available at: http:// www.endometriosis.org.au/savvyendosite/whatisendo
Melbourne: Epworth Hospital
Epworth Hospital Annual Report (2000). Melbourne: Epworth Hospital, 2001.
Blaming the victim. Obstetrics and Gynaecology Clinics of
  • M Ballweg
Ballweg M. Blaming the victim. Obstetrics and Gynaecology Clinics of North America 1997; 24 : 441–453.