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The average age of onset of endometriosis symptoms was 16
The average age of diagnosis was 28
On averagewomen waited 7 years for an accurate diagnosis of
endometriosis
On average,women visited 4 doctors before receiving a diagnosis
of endometriosis
60% of women reported being initially misdiagnosed with another
condition
Diagnosis
Symptoms
Pain
The most common endometriosis symptoms were tiredness or lack
of energy (84%), abdominal pain (82%), pain before and during
period(79%),pelvic pain (79%), back pain(75%) and abdominal
bloating (77%)
On a scale of 0-100, 100 = extremely severe, the most severe
symptoms were infertility (82),tiredness or lack of energy(79),
pain before and during period (73),abdominal bloating (72) and
heavy bleeding (71)
Infertility was the most severe symptom in women over the age of
25
Tiredness or lack of energy was the most severe symptom in
women under the age of 25
Pain was measured on a scale of 0-100, 100 = worst pain
imaginable
Average pain on a typical day was 47/100
Average pain in previous month was 57/100
Average pain during the past year was 70/100
The Psycho-social Impacts of
Endometriosis
Study lead: Georgia Rush ( PhD Candidate)
Associate Professor Kerry O’Brien,Dr RoseAnne Misajon
Contact : Georgia.rush@monash.edu; or kerry.o'brien@monash.edu
Behavioural Science Lab, Monash University
Study overview
Average age was 30
years
Study of 2068 women
with endometriosis
Average delay in
formal diagnosis of 7
years
68% of women
reported that they
need more social and
psychological support
from their doctors
78% of women reported
that they believe
counselling would be
useful after a diagnosis
of endometriosis
76% of women
reported that their
diagnosis of
endometriosis has
changed the way they
view themselves
Subjective Wellbeing (SWB)
Endometriosis HIV Anxiety Depression
Diabetes Arthritis Asthma Heart disease
High blood pressure
0
50
100
PWI scores
20% of women had medically
diagnosed fertility issues
Sexual distress
Sexual distress was measured
using the Female Sexual Distress
Scale, where a score of 11+
indicates a clinical level of sexual
distress
The average score from this study
was 26
Women with endometriosis reported high
levels of sexually related personal
distress
Higher sexual distress scores were
associated with poorer subjective
wellbeing, poorer body image and
higher rates of anxiety, depression and
stress
Higher sexual distress scores were also
associated with lower frequency of sex
per month and higher rates of sexual
and pelvic pain
SWB was measured using the Personal
Wellbeing Index (PWI) on a scale of 0-
100, 100= highest possible wellbeing
SWB was extremely low (58/100)
SWB was 12 points lower than the
western norm of 70-80
SWB was lower than other chronic
illnesses
Lower SWB was significantly associated
with higher rates of anxiety, depression
and stress
On average, women with
endometriosis had sexual
intercourse 5 times per
month
Anxiety and avoidance of
sexual intercourse
Avoid sex Anxiety around sex
0
50
100
Feelings around sex
67% of women reported avoiding
sexual intercourse because of
their endometriosis
64% of women reported
experiencing anxiety around
sexual intercourse
Pain during sex, pain after sex
and fear of pain were the main
reasons for anxiety and
avoidance of sexual intercourse
86% of women reported that
endometriosis has a negative
impact on their sex life
Body image
Women with endometriosis reported poorer body image in
relation to sexual activities, body area satisfaction and
overall appearance evaluation than women without
endometriosis
Women reported being the most dissatisfied with their upper
torso ( breasts, shoulders & arms: 65%), weight (60%) and
lower torso (buttocks, hips, thighs & legs: 51%)
Mean BMI of women in this study was 27
There were strong associations between BMI and each of
the body image measures. As BMI increased body image
worsened
There were strong associations between stress, depression,
anxiety and body image, as stress, anxiety and depression
levels increased, body image worsened
Mental health
The Depression Anxiety and Stress Scale (DASS-21) was used
to measure the severity of symptoms common to depression
and anxiety
Anxiety levels of women with endometriosis were in the severe
range and depression and stress levels were in the moderate
range
There were strong associations between most endometriosis
symptoms and depression, anxiety and stress
The symptoms with the strongest association with anxiety were
pain during sex, pain after sex and tiredness or lack of energy
The strongest associations between stress and symptoms were
pain during sex, pain after sex and tiredness or lack of energy
The symptoms with the strongest association with depression
were pain during sex, pain after sex and pelvic pain
"Every timei have my period I
end up in crippling, hospital
worthy pain that reminds me
i might never have children"
19 year old woman
"There are so many layers to this.
Physical pain, mental confusion,
relationship issues, loss of
opportunity to have children "
34 year old woman
"Even though I can talk to my
partner about not being able to
have sex, it comes with feelings
of I am disappointinghim"
26 year old woman
"I have become paranoid
about running out of
painkillers"
33 year old woman
"I have difficulty even dating
because of the anxiety issues
hanging over my head"
37 year old woman
"I feel useless as a woman as I am
unable to conceive naturally and
feel useless as my body doesn't
work properly"
27 year old woman
"90% of the time I have sex
it's painful. I do have sex
often but cringe every time
my husband asks"
35 year old woman
"I feel depressed. I don't feel
attractive and I feel devastated
every day because of my
infertility"
34 year old woman
"No one understands how you feel.
Finding it hard to face everyday,
waking up and be positive about
something you can’t control"
23 year old woman
What women said
Key findings
Women waited an inordinate amount of time for an accurate diagnosis of
endometriosis, with the average woman waiting 11 years for a formal
diagnosis
Misdiagnosis was extremely common, with 60% of women reporting that
they had been given a diagnosis of another illness before they received a
correct diagnosis of endometriosis
The most common symptoms of endometriosis were pelvic pain, abdominal
pain, abdominal bloating, back pain, tiredness or lack of energy and pain
immediately before and during period
Pain was severe, with an average severity rating of 70/100 in the past 12
months
Subjective wellbeing was extremely low as measured by the PWI, lower than
other chronic conditions and over 10 points less than the normative range
Sexual problems were common in our study, with the mean sexual distress
score indicating a clinical level of sexual distress and 86% of women
reporting that their endometriosis has had a negative impact on their sex
life
Women with endometriosis reported poorer body image in relation to
sexual activities, body area satisfaction and overall appearance evaluation
than women without
endometriosis
Mental health in women with endometriosis was poor, depression levels
were severe and anxiety and stress levels were moderate
Women with endometriosis identified that they feel they would benefit from
increased social and psychological support from their doctor (68%)
Summary
This study suggests that more needs to be done to support women following
a diagnosis of endometriosis. This includes provision of better
communication between doctors and their patients around the social and
psychological impacts of the condition. Additionally, women suggest that
better access to counselling and support services would be of benefit
following their diagnosis of endometriosis. Specifically, counselling around
fertility issues and psychological wellbeing. Our results identify the extent,
nature, and impact of endometriosis on womens physical, psychological, and
social wellbeing. The results also indicate that more than three quarters of
women with endometriosis would like more information from, and better
communication with health professionals.
1. Hutton, V., Misajon, R and Collins, F. 201. Subjective wellbeing and ' felt' stigma when living with HIV. Qual Life Res, 22(1), pp.65-73
2.Lovibond, S.H. & Lovibond, P.F. (1995).Manual for the Depression Anxiety Stress Scales. (2nd. Ed.)Sydney: Psychology Foundation.
3..DeRogatis L, Clayton A, Lewis-D’Agostino D,Wunderlich G, Fu Y. Validation of the female sexual distress scale-revised for
assessing distress in women with hypoactive sexual desire disorder. J Sex Med.2008 Feb;5(2):357-64.
4.The Body Exposure during Sexual Activities Questionnaire(BESAQ; © Thomas F. Cash, Ph.D, 2004)
5. The Multi dimensional body self-relations questionnaire ( MBSRQ;© Thomas F. Cash, Ph.D, 2004, 2000)
Behavioural Sciences Lab,
Faculty of Arts
We would like to thank the many women who participatedand shared
their experiences with us for this important study. Without their help, we
would not have been able to identify the experiences and needs of
women with endometriosis
Acknowledgement
