J Psychosom Obstet Gynecol 2004;25:123–133 June 2004

The impact of endometriosis

upon quality of life: a qualitative
analysis
Georgina Jones, Crispin Jenkinson and
Stephen Kennedy
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Objective: to explore and describe the impact of endometriosis upon quality of

life. Setting: Nuffield Department of Obstetrics and Gynaecology, University of
Oxford. Design: qualitative study.
Sample: twenty-four women with a laparoscopic diagnosis of endometriosis.
Methods: face to face, individual, in-depth interviews.
Results: analysis of the data revealed 15 descriptive categories. Pain, physical
functioning, role performance, social functioning, emotional well-being,
relationship with the medical profession, treatment, sexual intercourse, energy
and vitality, employment and infertility were found to be a particular concern for
women with endometriosis. Physical appearance, lack of control and
powerlessness, feelings of social isolation and concerns that their daughters might
develop endometriosis were new areas found to be negatively affected by the
For personal use only.

condition.
Conclusions: the impact of endometriosis-associated symptoms upon quality of
life is multidimensional and more complex than just negatively affecting
psychosocial parameters. Conducting in-depth interviews to explore the subjective
experiences of patients with endometriosis enabled the diverse areas of quality of
life to be identified. Adopting a qualitative methodology is essential for item
generation on disease specific health status questionnaires.

Key words: endometriosis, quality of life, psycho-social parameters

INTRODUCTION
Symptoms associated with endometriosis Little research has been carried out to *G. Jones, Nuffield
include chronic pelvic pain, dysmenorrhea, evaluate the impact these symptoms have Department of Obstetrics
dyspareunia, pain on defecation and sub- upon health-related quality of life (HRQoL) and Gynaecology,
fertility. Research findings have indicated from the patient’s perspective. In part this University of Oxford and
that these symptoms typically have a nega- has been due to the lack of a reliable and Health Services Research
tive impact upon psychological and social valid instrument which can be used to Unit, University of Oxford,
parameters1–9. However, most of this re- systematically measure the HRQoL of wo- C. Jenkinson, Health
search has concentrated upon the impact men with endometriosis. Recently however, Services Research Unit,
of endometriosis-associated pain on psycho- we reported on the development of an University of Oxford and
logical and social well-being5,6,9 or has been endometriosis specific questionnaire with S. Kennedy, Nuffield
based upon clinicians’ perceptions of the established psychometric properties that Department of Obstetrics
impact the condition has upon patients can be used to measure the subjective health and Gynaecology,
daily lives1,2,7. status of women with the condition10. University of Oxford,
Oxford, UK

*Correspondence to: Dr. G. Jones, Institute of General Practice and Primary Care, Community Sciences Centre, Northern
General Hospital, Herries Road, Sheffield S5 7AU, UK. Email: g.l.jones@sheffield.ac.uk

ª 2004, Parthenon Publishing. A member of the Taylor & Francis Group 123
DOI: 10.1080/01674820400002279
 Jones et al.
This paper reports on the qualitative
study carried out to identify the areas of
health status affected by the condition
which were then used to generate the items
on the questionnaire. As the emphasis of
qualitative research is upon interpreting and
describing the experiences and meanings of
people as accurately as possible, it has
become a popular method for generating
items on questionnaires which aim to mea-
sure the subjective experience of health and
illness.
One way of collecting such information
has been to conduct in-depth interviews
with patients with the condition of interest.
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The rationale behind in-depth interviews is
that compared to structured interviews, in
which all the questions are predetermined
and most answers are fixed choices11, it
allows subjects to describe their personal
experiences in their own words12. Conse-
quently, in the development of disease
specific questionnaires, in-depth semi-struc-
tured interviews have been widely employed
and include, for example, the Parkinson’s
Disease Questionnaire-3913 and the Polycys-
tic Ovary Syndrome Questionnaire14.
For personal use only.
The aim of this study was to identify and
understand, from the patient’s perspective,
the areas of HRQoL that are affected by
endometriosis and to address the benefits of
using a qualitative methodology for item
generation in the development of disease
specific health status questionnaires.
METHODS
Approval for this research was obtained from
the Oxfordshire Applied and Qualitative
Research Ethics Committee.
Women attending a gynecology out-
patient clinic at the Women’s Centre, John
Radcliffe Hospital, Oxford, with a laparo-
scopic diagnosis of endometriosis were
approached, to see if they would be inter-
viewed to explore the effects of the disease
on their quality of life. Any woman without
a laparoscopic diagnosis of endometriosis
was not included in the study.
Twenty-four women were interviewed to
explore the effects of the disease on their
quality of life. The sample size was deter-
mined at the point where no new themes
emerged from the interviews regarding how
endometriosis affects women’s quality of
life. This followed established methodology
used in the development of disease specific
questionnaires15.
124 JOURNAL OF PSYCHOSOMATIC OBSTETRICS & GYNECOLOGY
Endometriosis and quality of life
The mean age of the sample was 32.5
years (standard deviation [SD] = 5.8, mini-
mum 21.5, maximum 44). Twelve of the
women were married, three were separated,
two were co-habiting, four were in long-term
relationships (although they were not coha-
biting with their partner) and three were
single. Fourteen of the women were nulli-
parous. Of these, six (42.9%) were currently
undergoing, or had undergone in vitro ferti-
lization (IVF) treatment for endometriosis-
associated infertility.
Fourteen (58.3%) of the women were
diagnosed with minimal to mild endome-
triosis, eight (33.3%) with moderate to
severe endometriosis and two (8.3%) with
deeply infiltrating nodules. The main com-
plaint of 17 (70.8%) of the women was
chronic pelvic pain. Of the six women who
had undergone or were currently under-
going IVF, three (50%) women reported
having endometriosis-associated infertility
only. One woman (4.2%) was asymptomatic
and had been attending the clinic for
another gynecological condition.
Data collection
Twenty-four individual interviews were
conducted in the Nuffield Department of
Obstetrics and Gynaecology research facility,
Churchill Hospital, Oxford over a period of 6
months. The interviews were in-depth and
followed a semi-structured format. The first
question in the interview was ‘we’re trying
to find out what it’s been like for you having
endometriosis, so please feel free to say
anything about what your life has been like
for you with this condition’. Prompt ques-
tions concerning areas of HRQoL which may
have been adversely affected by endometrio-
sis were pre-prepared. For the first interview
these questions were taken from the existing
literature and referred to areas of HRQoL
already identified as negatively affected by
endometriosis, i.e. pain on intercourse.
However, for the subsequent interviews the
prompt questions were generated from the
themes identified from the transcripts. All
the interviews were tape-recorded, tran-
scribed verbatim and ranged between
25 min and 2 h (mean = 55 min) in dura-
tion.
Analysis
The goals of the analysis were to identify the
main themes about how endometriosis
 Endometriosis and quality of life
affects HRQoL. The framework that was used
for analyzing the qualitative interviews was
grounded theory16. Although it is mainly
used to generate theory, generating concepts
(i.e. experiencing pain during intercourse)
and categories (i.e. intercourse) are central to
this framework for analyzing qualitative
data. For example, it has been reported that
many studies are using this technique to
generate grounded categories rather than
theory17.
Starting with the first interview, the
transcript was coded using ‘open coding’
which helped identify the concepts and
enabled the categories of HRQoL affected
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by endometriosis to emerge. This was done
consecutively for each of the interviews.
With each consecutive interview the ‘con-
stant comparative method’ was used,
whereby each interview was constantly
reviewed to see how well the codes fitted in
with the emerging categories of HRQoL18.
On the basis of the emerging concepts
and categories, a theoretical sampling tech-
nique was adopted. Theoretical sampling is
an ongoing process which refers to the
gathering of data based upon the emerging
For personal use only.
concepts from the interviews. Consequently,
women with different disease stages and
symptom profiles were interviewed in order
to confirm the categories of HRQoL emer-
ging from the interviews19.
To reduce interviewer bias and to check
whether the codes adequately reflected the
emerging areas of HRQoL, a research nurse
also went through some of the transcripts.
The same themes were identified and the
interviewees’ dialogues were interpreted in
the same way. After conducting 24 inter-
views ‘theoretical saturation’ of the data was
reached. This meant that no new data was
emerging regarding the impact of endome-
triosis upon quality of life, and all the
interviews had been reviewed sufficiently
with the categories of HRQoL that had been
identified.
From this analysis, 86 concepts were
identified from the interviews. The 86 con-
cepts were placed in 15 descriptive categories
which are described below.
RESULTS
Pain
Endometriosis-associated pain was one of
the women’s major concerns and was nega-
tively HRQoL in numerous ways. Areas
where women described the physical symp-
Jones et al.
toms of pain varied. Some women
experienced pain only on menstruation.
However, others described experiencing pel-
vic pain unrelated to their periods. Other
symptoms which were identified as painful
because of endometriosis were bladder pain,
pain passing urine, pain opening bowels,
pain during and after intercourse and joint
pain, i.e. at the tops of the legs.
Different discourses were used to describe
the physical attributes of pain. In relation to
dysmenorrhea, phrases such as ‘stomach
cramps’, ‘bad tummy pains’, and ‘dull period
cramp’ were frequently used. Other women
spoke about the pain as if they were in
childbirth: for example, they spoke about
‘labor pains’ and the ‘contractions’ that they
experienced. For some women the pain was
experienced as an acute attack during which
they spoke of feeling ‘sharp pains’ and ‘sharp
needle like pains’. For others the pain was
described with less severity and acuteness
but was felt constantly:
‘I am sitting here now and I can feel it
because it is about a week after a period and
that is when it is worse at the end of a period
or just before a period starts and it just nags
all day long. It just nags and I often say if I
could just put my hand in and pull out the
bits that are hurting, that is all you want to
do. It is very physical I think for me.’
Physical appearance
Because of the pain intensity, women fre-
quently reported ‘generally feeling unwell’ and
that their physical appearance had been
affected, describing themselves as ‘draining
of colour’ or going white or pale. Many of the
women also expressed feeling worried about
the reasons for the pain, i.e. cancer, because
of the severity of their symptoms. Apart from
bowel pain or pain passing urine, changes in
bowel habits were also reported. Constipa-
tion or diarrhea were often experienced.
Some women described feeling sick and
nauseated with the pain:
‘If I hadn’t taken two paracetamols say when
the pain was just at it’s worse I was nearly
just running to the toilet to be sick. That’s
how bad it was. That’s how bad it was.’
Feeling bloated, having greasy or spotty
skin and weight gain were other endome-
triosis-associated symptoms described as
having a negative impact upon the inter-
JOURNAL OF PSYCHOSOMATIC OBSTETRICS & GYNECOLOGY 125
 Jones et al.
viewees’ physical appearance. This was be-
cause, for many women, they felt unable to
wear the clothes they wanted to during these
periods. Abnormal bleeding was another
symptom identified: especially heavy bleed-
ing during menstruation and irregular
bleeding. However, this seemed to be de-
scribed more as an inconvenience and
frustration by the women as it was the
constant need to carry sanitary towels/
change tampons which negatively affected
HRQoL.
Physical functioning
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Physical functioning refers to areas of
HRQoL affected by mobility and other
activities of daily living, such as bathing,
eating and drinking. All areas of physical
functioning were described as affected be-
cause of endometriosis-associated pain.
Nearly all the women spoke about having
problems with mobility, i.e. walking, stand-
ing, sitting or exercising. Appetite and
sleeping were also affected. Many women
spoke about not being able to sleep properly
at night, either because the pain would wake
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them or prevent them from getting to sleep.
This was quite ironic as for most women the
only thing they could do when they were
experiencing the pain was to go to bed until
it subsided. Pain prevented some women
from being able to eat, either because it
made them lose their appetite or feel sick
and nauseated.
Role performance
Pain affected other activities of daily living,
particularly role performance. Role perfor-
mance refers to a person’s ability to
continue with his/her daily commitments
in life, e.g. household activities and em-
ployment13. Most of the women were
unable to continue with their daily activ-
ities such as cooking, shopping, going to
work and cleaning. If they had children or
pets, women described not being able to
play with them or look after them properly.
One woman stated:
‘Now I really am beginning to feel it is
affecting my quality of care that I give to the
children . . . I don’t feel well enough to give
them the care . . . I just want to curl up in bed
like I would have done on my days off when I
had the pain before and I can’t do that. So I
feel I am not giving them the care that I want
126 JOURNAL OF PSYCHOSOMATIC OBSTETRICS & GYNECOLOGY
Endometriosis and quality of life
to and sometimes I do have to sit there quietly
on the sofa while they are playing before I can
play with them.’
The degree to which physical functioning
and role performance were affected was less
severe for some of the interviewees than
others. Women who had less severe pain
described the pain as more of an inconve-
nience, rather than something that stopped
them from doing everything they wanted to
do. This was in stark contrast to the
experiences of women who suffered more
intense pain,:
‘When the pain comes you know, just round
on the right hand side that’s where the pain
actually comes and it is severe . . . The pains
were getting worse, and obviously I was off
work again, not going to work . . . because of
the pains I just couldn’t. I just could not
stand, sit or really anything.’
Energy/vitality
Tiredness and fatigue were frequently ex-
perienced. Pain was reported as a cause of
tiredness: ‘You get tired because pain does get
you tired’. However, low energy levels were
also the result of disturbed sleep at night,
either because of the pain or because of the
heavy bleeding the women experienced with
menstruation:
‘It was a case of very low energy and lots of
pain. Not being able to get out of bed in the
morning, not sleeping at night because of the
pain.’
Social functioning
Apart from one woman who was asympto-
matic and whose primary reason for
attending the gynecology out-patient clinic
was infertility, all of the women spoke about
the negative impact of pain upon their social
life, in particular not being able to attend
social events because of it. Some women
explained how they had ‘put off’ starting new
activities because of their pain:
‘My social life was fine as long as it wasn’t
around that week to 10 days. I wouldn’t want
to go out then because I didn’t feel well, felt
nauseous. The pain wouldn’t let me go out for
start. I would have a couple of days definitely
where I couldn’t function properly at all. If
any great function came up in that time I
 Endometriosis and quality of life
wouldn’t go. I would just have to change my
plans or miss out.’
Two main reasons were identified for this.
Firstly, many of the women described feeling
worried about the pain starting in public
because if the pain occurred most of the
women ‘wanted to be by themselves’ and not
surrounded by others. Secondly, some of the
interviewees were prevented from attending
social events as the pain they experienced
made them tired and lacking energy. These
problems frequently led to a lack of con-
fidence. Many women described how they
felt less confident because they were unable
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to go out as often as they would like or they
were not able to mix as easily when out in
public because they were constantly worried
about their condition.
Control and powerlessness
Most of the women felt that the endome-
triosis pain controlled their lives. They
described feeling ‘frustrated’ that they could
not control or forget their symptoms, either
because the pain was constant and/or be-
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cause it occurred at times of the menstrual
cycle other than menstruation.
Due to the incapacitating nature of the
endometriosis pain, the women described
having to make plans regarding arranging
holidays or attending social events to avoid
the times their pain would be severe. Many
women found this frustrating: they de-
scribed feeling ‘ruled’ by the endometriosis
and stated that it was ‘taking away their life’.
The unpredictability of the pain added to the
frustration. Consequently, in many cases the
women had to keep a diary of their symp-
toms in an attempt to predict when would
be the best time to attend social functions:
‘It is just the restrictions it puts on you. You
just have to think before you do anything. If
you are invited for a night you have to say
how am I going to feel. Am I going to be able
to make it work and at the moment being ill
fits into my schedule. It is part of my life.’
Emotional well-being
Emotional well-being was affected in numer-
ous ways. Many women described not being
able to cope with the pain:
‘I just could not cope. I just could not cope
with it. I couldn’t stand up straight because I
Jones et al.
felt as if I was just cramped all inside the
stomach . . . some points I couldn’t even sit
down because it was painful in the back
passage.’
For some women the pain made them
‘miserable’, whereas others described them-
selves as ‘depressed’ because of it. Nearly all of
the women spoke of how they felt weepy
and tearful because of it:
‘I obviously got very emotional when I was in
pain because obviously it hurt that much I
used to cry. It was just painful and for two
days I used to be curled up on the sofa with
hot water bottles.’
Most of the women described feeling hor-
monal or like they had premenstrual
tension (PMT) all the time. They spoke
about feeling moody and having short
tempers that were often taken out on their
family, friends or children. For some wo-
men this was described as feeling ‘quite
moody’ or ‘ratty’. For others it was more
severe with a couple of women describing
how they felt ‘violent’ and as if they could
‘kill someone’.
Intercourse
The interviewees who were sexually active
(n = 18) described feeling pain either during
or after intercourse or on both occasions. For
some women this was described merely as a
‘discomfort’ or ‘being uncomfortable’. For
others however this was described as intense
pain:
‘During sex yes. Not afterwards. It is intense
pain at first and then you get a dull pain that
goes right across your abdomen. You are sore
afterwards but sometimes it will grab you in
the night and you can’t move, you get this
pain in the pelvis area and you are doubled
and you try to move and it is such a spasm
that you literally can’t move. You think no
this can’t be endometriosis, this has to be
something more serious, this can’t surely be
this painful but then it eases off and it is like
cramp, real intense cramp, that is probably
what it is I don’t know.’
The pain had led all but two of the women
who were sexually active to avoid inter-
course. The act of avoiding intercourse also
led to feelings of inadequacy and guilt. Many
of the interviewees described themselves as a
JOURNAL OF PSYCHOSOMATIC OBSTETRICS & GYNECOLOGY 127
 Jones et al.
‘bad person’: because they could not enjoy
intercourse and because of the effect it was
having upon their partners. A couple of
women spoke about how they felt ‘inade-
quate’ because their sex lives differed
dramatically to the images portrayed on
television:
‘I have always had pain during sex and then
afterwards. In a way it is the afterwards
because . . . You know it is going to hurt
afterwards, so yes it has definitely been
affected . . . he is always very nice
afterwards but quite often I think the pain
is going to be here and I am going to be in
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tears in a minute . . . it will really hurt and
sometimes it hurts during but I find I can
cope with that but it is afterwards, about half
an hour or so afterwards I am in a lot of pain
for about 2–4 hours after that . . . it makes
me feel not very nice as a wife to my husband
that I shouldn’t feel like this. I feel weepy or I
will say just leave me alone because I want to
sit down for a while. Nobody should feel like
that, you should feel elated afterwards and it
doesn’t feel like that at all.’
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Employment
Many women described feeling guilty for
having time off work because of their
endometriosis:
‘If I had a really bad spasm I would obviously
not be able to work. I would have to spend the
day in bed. It wasn’t a lot of time, my boss is
very understanding but I always felt guilty
about it so I would always try and work an
extra day to try and make it up.’
Women who were able to go to work,
described feeling worried that the endome-
triosis-associated pain might prevent them
from carrying out their duties. Associated
with this, women described feeling embar-
rassed about having an attack of
endometriosis at work because they would
then have to explain to their colleagues
why they needed time off or why they
would need to go and lie down for a while
until the pain subsided. These issues were
felt more strongly if the women worked in a
male dominated environment or they had a
male boss. They felt that men were less
understanding about the condition and
were less easy to talk to about the personal
nature of their symptoms such as period
pains.
128 JOURNAL OF PSYCHOSOMATIC OBSTETRICS & GYNECOLOGY
Endometriosis and quality of life
Infertility
Forty-three per cent of the women who
were nulliparous had undergone or were
currently undergoing IVF treatment for
endometriosis-associated infertility. Many
issues were raised about the impact of
endometriosis-associated infertility upon
HRQoL, ranging from feeling worried and/
or depressed about the possibility of not
conceiving to feeling inadequate: as a
woman it was felt that they should be able
to have children:
‘Obviously it [endometriosis] gave me five
years of infertility for a start. Desperation for
children . . . I used to cry a lot and feel
desperate. I used to hate looking in peoples
prams . . . I thought oh no it is never going to
happen so that was probably one of the worst
things, the desperation to have a child and
that it took five years to get pregnant. That
was probably the worst thing for me really.’
One woman described how she did not ‘feel a
complete woman’ because she had not been
able to conceive. Those women who had
been in long term relationships described
how their relationship had suffered because
of the infertility, with a resulting strain upon
their personal lives:
‘We were trying for another baby and because
of all the problems and everything else,
nothing happened. So it was back up the
John Radcliffe and they did a sperm count on
my husband. He had a low sperm count and
they did it again but they said it wasn’t too
bad and then I had a laparoscopy and they
discovered I had adhesions so it just went
from there and nothing happened. That
wasn’t a very good time. That’s not the
reason why we separated but I think it is one
of the reasons along the line . . . I think that
was one of the underlying problems over the
last couple of years.’
Daughters and endometriosis
Many of the women who had daughters
expressed concern that their child might
develop endometriosis, because their daugh-
ter might have to live with the pain or
infertility that they had experienced them-
selves. Another worry expressed was that
their daughters may encounter the same
problems with diagnosis and the medical
profession as one woman reported:
 Endometriosis and quality of life
‘I can remember actually when I was at
school getting really bad cramps but you
don’t know then whether it is normal or it is
just one of those things you put up with and
nobody ever says anything. My daughter
misses a lot of school now with periods and
she takes to her bed so I am just hoping that
they are more switched on now and take her
more seriously when I take her to the doctor.’
Treatment
Treatment was a particular concern for the
women. Many women felt worried about
endometriosis returning after treatment;
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treatment not working; experiencing bad
side effects and staying in hospital.
Most of the women were taking over-the-
counter painkillers to help them cope with
the pain. Some were taking painkillers only
when menstruating. Others took painkillers
on a daily basis because the drugs would not
work if taken after the pain had started.
Many of the women expressed frustration at
constantly having to rely on them and take
them to cope with the pain:
For personal use only.
‘It is just really the taking of tablets, the
expense of the tablets as well. You’re trying
all these different things and you end up with
a cocktail of tablets and there is nothing that
anybody can do about it.’
The frustration at taking over-the-counter
painkillers was also expressed about pre-
scribed drugs. However, this was
predominately because of their side effects
and the fact that in some cases the pre-
scribed medication exacerbated the
endometriosis symptoms:
‘I was put on Danazol and that was awful. In
fact the symptoms were worse when I was on
that. The other symptoms that I got on
Danazol made me feel even more depressed
and I said I would rather take painkillers
every month than have to take that again
which I did for the whole 3 years I lived in
Borneo. I just survived from month to month
on painkillers and I think I could have taken
shares out in the company. It was the only
way to get through it.’
Some women who had stopped taking the
prescribed medication because of side effects
felt angry that the drug treatment they were
on did not work. This also applied to how
women felt about surgical treatment. De-
Jones et al.
spite many of the women undergoing
numerous surgical operations, i.e. laser la-
paroscopies to treat their endometriosis,
they still described being symptomatic.
Consequently, many of the interviewees
described feeling frustration and disillu-
sioned, which was directed primarily at the
medical profession. In particular, the women
felt frustrated that the doctors they had seen
had not been able to do anything for their
symptoms:
‘Sometimes I used to feel why the hell have I
got this and why can’t they do anything
about it. Each time I come to the hospital I
question them again about why am I getting
it back again, things like that and getting very
frustrated when I couldn’t get an answer.’
‘People can cure all sorts of things
nowadays but I was getting this thing
that kept coming back and no-one could
explain why it kept coming back. You think
that once they have burnt them away then
they have taken it all away and you won’t
get it back. But it kept recurring and it was
so annoying because you had to live with it
until they get to a certain point before they
could burn them off and that was really
annoying as well because you are still
suffering with the pain.’
Medical profession
Frustration at the lack of knowledge about
endometriosis shown by the doctors was
frequently reported by the interviewees. This
was primarily because the treatment had not
cured their symptoms. Delay in diagnosis
was another reason. Nearly all of the women
had experienced a long delay from the time
they first started seeing doctors about their
symptoms to obtaining a diagnosis of en-
dometriosis:
‘I think the biggest problem initially was
getting a diagnosis which took years. I mean
obviously I had this, now I realise I had it for
a very long time, since I was probably about
twenty, twenty-two and I’m now thirty-nine
and I didn’t get diagnosed properly until
1996.’
One reason for the delay in diagnosis was
that many women had been misdiagnosed.
In particular, many women reported how
they had been given an incorrect diagnosis
of IBS:
JOURNAL OF PSYCHOSOMATIC OBSTETRICS & GYNECOLOGY 129
 Jones et al.
‘When I came for some appointments or
whatever the consultant was like ‘‘you must
be crazy, I don’t think you’ve got any pain.
Maybe it’s just some kind of phantom pain or
maybe it’s just your imagination or
something’’. I mean I was actually arguing
with this one doctor saying I know, I know
I’ve got the pain you know, and he’s telling
me oh you know maybe you’ve got what’s it
called, irritable bowel syndrome.’
The attitudes of some members of the
medical profession particularly affected
HRQoL. Many women felt they were wasting
doctors’ time because they believed that
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their doctors thought the problems were all
in their mind. Some women described bad
experiences with their GPs or hospital con-
sultants; others described bad experiences
with both. Many women described how they
had been told to ‘get pregnant’ to cure their
endometriosis, despite not having a partner,
or ‘have a hysterectomy’ when they were only
in their early twenties. Others had been told
that painful periods were just part of being a
woman and therefore to cope with it:
For personal use only.
‘When somebody like a doctor dismisses you
by saying well you’ve only got period pains.
Go and have a baby you’ll be fine after that.
It’s so frustrating and so annoying and I have
had that on more than one occasion. I’ve had
two gynecologists who have said that to me
now and I think that is so wrong. I had
colposcopy treatment in September and I had
the treatment and all the rest of it. The
registrar came round to me afterwards and
said ‘oh you’ll be fine now, you know we’ve
done the treatment, everything will be fine’.
Six weeks later I went back and said there’s
been no change whatsoever. He said, ‘well
you really just need to have children. That
will sort it out.’
Social isolation
Believing that others felt that the symptoms
were being made up led many women to
doubt themselves and question the severity
of the symptoms. Consequently, many of
the interviewees described finding it difficult
to talk to other people about their endome-
triosis. This had a major impact upon
HRQoL as feelings of social isolation and
loneliness were frequently reported:
‘I don’t really tell anybody much about it. My
mum knows and that is the only person I tell
130 JOURNAL OF PSYCHOSOMATIC OBSTETRICS & GYNECOLOGY
Endometriosis and quality of life
because it is a womany thing, a woman’s
thing with a period. . .You tell people, who tell
other people and you don’t really want
anybody to know. It is a bit more personal,
women’s periods etc. It is different if it is your
leg or something like that but you say what it
is and then you have got to explain. I suppose
it is one of those things that you keep to
yourself.’
‘I think that’s the worst part. You know not
being able to tell people how you feel. People
expect you to always, always, be chirpy and
chippy.’
Three reasons were identified for this.
Women felt that: (1) other people did not
understand what they were going through;
(2) that other people thought they were
moaning; and (3) as endometriosis is pre-
dominately linked to menstruation there
was a distinct feeling of others believing that
if some other women have periods every
month and can cope then why can’t they?
As one woman explained:
‘I could cope with the time of the month,
everybody has to, but it was the bit
afterwards and because you have nothing to
show for it I am sure people thought she is
making it up again. Oh god everybody has a
time of the month, why can’t she just snap
out of it.’
DISCUSSION
Qualitative methods are increasingly being
used in healthcare research, especially in the
fields of health service research and health
technology assessment20. Whereas one of
the main aims of quantitative methods is
to explain causal relationships (usually
through the aggregation of numbers into
statistics), qualitative research searches for
reasons, motives or explanations12. Conse-
quently, as the aim of qualitative research is
to describe and interpret meanings and
experiences of people as accurately as possi-
ble, this methodology has become
important for obtaining information about
the subjective experience of health and
illness upon HRQoL.
Endometriosis is a disease primarily asso-
ciated with pain and infertility and it has
been postulated that pain is responsible for
causing the most negative affect on
HRQoL21. All of the women (except one
asymptomatic infertile woman who had no
 Endometriosis and quality of life
pain), experienced pain because of their
endometriosis and reported that it had a
negative impact upon all areas of HRQoL,
including physical functioning, role perfor-
mance, energy/vitality, social functioning,
intercourse and emotional well-being. Simi-
larly, infertility had a negative impact upon
HRQoL, particularly because of its effect
upon emotions and personal relationships.
However, many other areas of HRQoL not
typically associated with endometriosis were
identified from the interviews. It was often
reported that endometriosis negatively af-
fected self image and left women feeling
powerless and frustrated because they could
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not control their symptoms. Women who
had daughters expressed feeling anxious that
their daughter might develop endometriosis
and consequently suffer from pain and
infertility. Not only was the role perfor-
mance of the women who were in
employment negatively affected because of
the endometriosis-associated pain, but the
emotional problems associated with endo-
metriosis (such as feelings of guilt and
embarrassment at work because of the con-
dition) also contributed to an impaired
For personal use only.
quality of life. Physical appearance, feelings
of social isolation, poor sleep, avoidance of
sexual intercourse and negative cognitions
about the condition (i.e. feeling as if the
condition was ruling their lives), were also
new areas generated by the research that
were found to be of particular concern for
women with the condition.
Most of the women reported a long delay
between the onset of symptoms and diag-
nosis. It has been estimated that the mean
delay in the UK is 8 years and that delay in
diagnosis leads to feelings of frustration and
isolation22,23. Failure to diagnose endome-
triosis by attributing the symptoms to other
conditions such as IBS was often reported as
a contributory factor in delaying diagnosis.
This is not an uncommon problem within
gynecology as there is considerable overlap
in symptomatology between conditions
such as endometriosis, IBS and pelvic in-
flammatory disease (PID). Many women
attending gynecology clinics have symp-
toms suggestive of IBS24, and women often
experience changes in bowel habit with the
menstrual cycle that are unrelated to pathol-
ogy, although endometriosis can exacerbate
these25. Many of the interviewees experi-
enced changes in bowel habit (i.e. pain on
opening their bowels, constipation and
diarrhea because of their endometriosis),
Jones et al.
which had a negative impact upon their
HRQoL.
Frustrations with the medical profession
reported by the women have been supported
in findings from other studies. Bitzer et al.26
reported that the medical profession, in
particular gynecologists, were considered
the main source of support for women with
endometriosis. They found that patients
desired a close relationship and expected
psychological support from their doctor.
Surprisingly, support from third parties (i.e.
psychologists and counsellors) was less im-
portant, emphasizing the important role of
the medical profession in affecting the
HRQoL of women with endometriosis.
There were some limitations to the in-
depth interviews carried out to generate the
questionnaire items. Firstly, all of the wo-
men were recruited from a tertiary referral
centre for endometriosis. It could be argued
that one of the problems of recruiting
women from such a hospital was that only
women with the most severe cases of
endometriosis were interviewed. If so, the
themes generated for the questionnaire
would not be representative of how endo-
metriosis affects the general population with
this condition. To overcome this potential
problem, women with different disease se-
verity and women presenting with different
symptom profiles (e.g. infertility only) were
recruited so that the full nature of the impact
of this condition upon HRQoL could be
determined.
Another problem encountered during the
identification of the main themes from the
interviews was that it was difficult to
distinguish which symptoms were unique
to endometriosis. For example, many wo-
men in the study reported heavy or irregular
bleeding because of their endometriosis.
However, in the UK alone, approximately
one in 20 women aged between 25 and 44
years will consult their GP annually because
of menorrhagia27, emphasizing how com-
mon this complaint is amongst women and
how it may not be unique to endometriosis
sufferers.
Some atypical cases (i.e. areas of HRQoL
affected by endometriosis which were only
reported by one or two women), which are
often referred to as negative cases28, were
found during the interviews. Despite being
diagnosed with moderate to severe endome-
triosis, one woman who was interviewed
reported that she had experienced no pain
because of her endometriosis and was una-
JOURNAL OF PSYCHOSOMATIC OBSTETRICS & GYNECOLOGY 131
 Jones et al.
ware that she had the condition until it was
found during an operation for a miscarriage.
However, this is consistent with the litera-
ture, as it has been found that it is not
unusual for a woman with endometriosis to
be asymptomatic and that a laparoscopic
finding of endometriosis is common in
many women who do not experience
chronic pelvic pain29,30.
One woman reported how she was unable
to drive because of the pain. However, this
was because she found it difficult to sit and
concentrate when she had the pain – themes
which were both identified separately. Also,
two women described experiencing persis-
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tent thrush and having a bad discharge, but
these areas were not included as they
reported other medical problems which were
most likely responsible for them rather than
the endometriosis.
Britten11 argued that the content of an
interview is determined by the setting and
therefore it is best to interview people in
their home, as this makes the interviewee
more comfortable and at ease. Although
home interviews are desirable they were
not possible for this study as the department
For personal use only.
had reservations about a female researcher
conducting home visits during the evenings.
Many qualitative researchers have argued
that ‘reflexivity’ (which refers to how the
data produced from the research process are
influenced by the research process itself and
researcher biases) is a central concept of
qualitative research16,23. As the researcher
had no personal experience of endometriosis
and only very basic knowledge of its symp-
toms before the interviews were started, it
was felt that there were very limited expecta-
tions about the potential impact of this
condition on HRQoL. Consequently, it was
hoped that the problem of researcher bias
was reduced in this research as there were no
prior assumptions about the themes that
would be generated from the interviews.
CONCLUSION
Adopting a qualitative methodology is im-
portant for item generation on disease
specific health status questionnaires. The
in-depth interviews highlighted the diverse
areas of HRQoL that are affected by endome-
triosis and identified those experiences
which are of great importance to women
with the disease. Although endometriosis-
associated pain and infertility can negatively
affect psycho-social well-being, it appears
132 JOURNAL OF PSYCHOSOMATIC OBSTETRICS & GYNECOLOGY
Endometriosis and quality of life
that the quality of life of women with the
condition is dependant upon other domains,
i.e. cognitions, emotions, work, sex life,
relationship with the medical profession,
treatment and access to social support,
which may be overlooked. A greater aware-
ness of the multi-dimensional impact of the
condition from gynecologists and other
healthcare professionals should be beneficial
in the management of patients with endo-
metriosis, and consequently improve the
quality of life of women with the condition.
ACKNOWLEDGEMENTS
The authors thank Pharmacia Corporation,
USA for funding this research.
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Current knowledge on this subject

. Symptoms associated with endometriosis include chronic pelvic
pain, dysmenorrhoea, dyspareunia, pain on defaecation, and
sub-fertility. Current knowledge indicates that these symptoms
typically have a negative impact upon psychological and social
parameters, leading to a diminished quality of life for women
with the condition. However, most of this research has
concentrated upon the impact of endometriosis-associated pain
on psychological and social well-being or has been based upon
clinicians’ perceptions of the impact the condition has upon
patients’ daily lives.

What this study adds

. This study reports on a qualitative study carried out to identify
the areas of health status affected by endometriosis from the
patient’s perspective. The findings have highlighted that the
impact of endometriosis-associated symptoms upon quality of
life is multidimensional and more complex than just negatively
affecting psychosocial parameters. Physical appearance, lack of
control and powerlessness, feelings of social isolation and
concerns that their daughters might develop endometriosis were
new areas found to be negatively affected by the condition.
Conducting in-depth interviews to explore the subjective
experiences of patients with endometriosis enabled the diverse
areas of quality of life to be identified. Adopting a qualitative
methodology is essential for item generation on disease specific
health status questionnaires.

JOURNAL OF PSYCHOSOMATIC OBSTETRICS & GYNECOLOGY 133