LIVING WITH ENDOMETRIOSIS

LIVING WITH
ENDOMETRIOSIS
A photovoice study conducted by Clair Dempsey at the Centre for Intelligent
Healthcare, Coventry University.

INTRODUCTION
Endometriosis is a medical condition in
which cells similar to the ones lining the
womb grow elsewhere in the body. It can be
painfully debilitating but also comes with
considerable psychological burden. 1 in 10
cisgender women and transmen are living
with endometriosis. It can take around 7.5
years to get diagnosed.
Adenomyosis is a medical condition in which the
inner lining of the womb grows into the muscle wall
of the womb. Adenomyosis can only be diagnosed
after hysterectomy, although surgeons may suspect it.
It is common for those with endometriosis to also be
diagnosed with adenomyosis.
In the summer of 2019, a postgraduate researcher from
Coventry University placed an advert looking for people
with endometriosis and/or adenomyosis to be coresearchers
in a photography-based research study that
would assesses the psychology needs and coping strategies
of those living with these conditions.
The advert was shared widely over social media and six
women agreed to be co-researchers, one from Cardiff
and the other five from the West Midlands. Four of the
women met up for a workshop at Coventry University, the
other two were led though the project over the phone.
The first workshop explained the method, the research
question, ethics and informed consent. The method
being used was photovoice, a method developed in
the 1990s. Photovoice is a form of participatory action
research. Different from conventional research in 3 ways:
shared ownership of research, community-orientated
understanding of social problems and propensity for
community action (Kemmis and Taggart, 2005)
Photovoice is a process by which people can identify,
represent and enhance their community through a
specific photographic technique’ (Wang and Burris, 1997).
Every week for five weeks the women submitted up to five
photographs, with captions that they felt answered the
research question: What are the psychological needs and
coping strategies of those living with endometriosis and/
or adenomyosis?
After five weeks of data collection, the group met up
for a full day of group discussion and data analysis. The
primary analysis was conducted by the co-researchers,
they identified the themes, needs, unmet needs and
coping strategies within the photographs and captions.
They were guided through the analysis by the researcher,
Clair Dempsey. A secondary analysis was conducted
by Clair of the transcript of the group discussion to
make sure everything was covered in the discussion
and to organise the needs, unmet needs and coping
strategies that would be incorporated into a psychological
intervention designed to improve the quality of life of
those living with endometriosis and/or adenomyosis.
There were 143 images and the total word count of
the captions was just over 13,000. All the images and
captions were displayed at an exhibition called ‘This is
Endometriosis’ on 24th October 2019.
This photobook contains some of the raw data that was
collected for the needs assessment. We invite you to
take a look into what it’s like to live with endometriosis
and adenomyosis. Take the time to absorb the meaning
behind each picture and put yourself in the shoes of these
brave and honest women.
2

THE
SYMPTOMS
Contemplation.
‘You don’t look ill’.
What do I look like?
Happy? Sad? Tired?
Frustrated?
How can anyone truly tell from the
fragments that you see? When I look
in the mirror I don’t fully recognise
the person staring back at me.
I see the exhaustion in my face,
the bloodshot eyes, puffy skin and
breakouts. All I see are the side effects
of my condition. Fighting a battle with
yourself is gruelling and having to
justify the way you are feeling to other
people is even more so.
3

THE
SYMPTOMS
Fingers Crossed.
What do you do when you are in
agony but you have a presentation to
give?
You grit your teeth and cross your
fingers – so many times when I’m at
work I’m hiding how awful I feel.
4

THE
SYMPTOMS
‘Pain’ Cushion.
‘Can you describe your pain?’
Every endometriosis sufferer has
heard this question from GPs and
Specialists, even from friends and
family. Pain has become part of my
everyday life.
Sharp, stabbing, piercing pain to a
throbbing ache.
Reflecting more than just the stabbing
in my uterus this image also has
a more personal reference as it’s
symbolic to my career within fashion.
5

THE
SYMPTOMS
Rate your pain.
I hate when doctors ask me to rate my
pain – I never know how to answer.
Sometimes when I feel bad, I squeeze
my partner’s hand to show how
intense the pain is.
I probably can’t do this to a doctor –
so how can I explain my pain?
6

THE
SYMPTOMS
Swollen.
These two pictures of me were taken 10 hours apart. The picture on the
left was taken at 10.30 pm. My stomach has dramatically swollen and my
waist measured 32 inches. The picture on the right was taken at 8.30 am
the following morning, I measured my waist again, which had shrunk to 28
inches.
Nothing out of the ordinary had caused this swelling. It is just a symptom
that comes with endometriosis. The Endo Belly is not only uncomfortable
but also embarrassing and humiliating. To balloon and swell where you
look pregnant every night, the discomforting bloating hardly makes you feel
desirable.
The irony is that one of the few visible symptoms of endometriosis makes you
look like the one thing you can’t be because of it.
7

THE
SYMPTOMS
Endo belly.
It’s distressing to have a disease that impacts your fertility and one of the
main symptoms makes you appear as though you’re pregnant. My stomach
feels so bloated and hard. Comfort and concealment are my main concerns
when choosing what to wear each day.
8

THE
SYMPTOMS
Melon womb!
I finally came to have the
hysterectomy. The beacon of support
and understanding that was my new
consultant took me and my partner
through it all step by step.
As he came to see me after surgery
had finished we talked about how it
had all gone. He continued to explain
that whereas the womb should usually
be the size of a large peach, mine had
been stretched to the size of a yellow
melon. This surface area, and that of
the additional fibroids had created
a huge surface area leading to the
bleeding.
It was then that I was told that I had
adenomyosis as well as endometriosis.
Just having the information – an
explanation – made such a huge
difference. That, and the fact that
someone had finally listened and
helped me to get better.
9

THE
SYMPTOMS
YOU GROW GIRL.
Ok, well not the caption I want to use in my life’s representation. My stomach
swelling. I want to grow in my strength, my knowledge, my love of life, my
ability to be part of life not constantly in this position on the sofa or in my
bed because of endometriosis.
10

This is my right side.
This side feels great, as you can see I have a gap
between my leg and stomach. This side is flat in
comparison to my left side. Which should feel this
way.
My operation was in March last year, my needs are
not being met by:
1. Not having a post op check, them not
listening to my “squeezy pain” as I called
it, right at the beginning after my surgery
in my groin. Took me until October from
March to see my surgeon. This is not
acceptable.
2. I never had any counselling before or
after my operation.
3. I wasn’t told I was entitled to a
menopause specialist because of my age.
My left side.
Is incredibly painful.
And causes me so many issues.
As you can see it’s so swollen. This particular night
it felt like it wasn’t cutting the circulation off to my
leg.
You can also see my lap scars in this picture. They
don’t look as bad when I’m standing up but still
none of this makes me feel good as a woman.
11

THE
SYMPTOMS
Ashamed.
Another picture of my swollen belly because of my operation. I feel I wasn’t
given the right care from the start. My endometriosis was more complex. I
should have had it done at a BSGE centre. Not my standard gynae. I wish I
trusted myself and fought for better care within the NHS. But this care isn’t
standard and it should be, most girls have to go private.
This shouldn’t be the case.
12

THE
SYMPTOMS
Saturday was a rough one. I was so
fatigued and in agony, I barely got out
of bed. I didn’t eat all day. I felt so sore
and bloated.
The only thing I consumed was
ibuprofen and water. Turns out
painkillers on an empty stomach
isn’t a great idea. So, I spent most of
Sunday morning throwing up.
13

THE
SYMPTOMS
Facilities.
Knowing where the toilet is located is an important factor for me. I have long
suffered with upset stomachs, unusual bowel movements and excessive toilet
trips. Along the years I’ve been told that this embarrassing symptom was due
to my diet, nutrition deficiency, IBS and also that it is all in my head. During
my early endo diagnosis journey, due to the symptoms of irregular bowel
movements I was batted between Gynaecology and Gastroenterology for well
over a year, each stating my problems weren’t a concern for their unit. Passing
me back and forward between both departments.
Until both a laparoscopy and MRI proved I have endometriosis and it
was stuck to my bowels and recto sigmoid. Since my excision surgery I
unfortunately haven’t really seen a great improvement regarding my bowels,
so I still suffer with regular trips running to and from the bathroom.
14

THE
SYMPTOMS
Missing out.
I have always been on the large size for
a number of reasons, but the illness
and depression have often led to
limited motivation for exercise.
It has restricted me from doing fun
things- which then leads to more
depression.
15

THE
SYMPTOMS
Today I’m so bloated it’s painful. My weight fluctuates all over the place –
I have to give myself a break and not obsess over the scales.
I’m considering throwing them away.
16

THE
SYMPTOMS
Grotty.
This to me symbolises the way that I
felt for most of my years leading up to
the hysterectomy.
With each period I would feel dirty as
I was never sure how heavy it would
be, and whether my clothes would
need changing that day.
I chose this cupboard because it
reflects the grey dirty feeling – but also
hides things with it.
I had no idea what was going on
inside of me because my attempts to
get a doctor to take any sort of holistic
approach failed, and I remained in
the dark between the ages of 10 and
40 until an inflamed ovary led to a
series of operations culminating in my
hysterectomy.
17

THE
SYMPTOMS
Just put it in the machine.
A phrase heard regularly in the
household at the height of my
illness. My partner patiently washed
everything as I had accident after
accident regardless of how many pills
or how much sanitary wear I was
using.
At the height of it all, I was unable
to move as my red blood count was
so low I felt dizzy as I stood up,
moving tended to cause yet another
deluge. This wasn’t the teaspoon as
mentioned.
This was something more akin to a
pound or two of lamb’s liver! I would
also feel faint because of the anaemia
that came with it.
I felt helpless and vulnerable most of
the time, but my partner’s patience
and support helped me to cope with
the bad days.
18

THE
SYMPTOMS
Bouquet.
Menstruation is a normal part of being
a woman, and we are told that pain is
too.
My menstruation has always affected
my life since it started when I was
12 years old, with insanely painful
cramps, heavy bleeding, nausea and
diarrhoea, combined with emotionally
charged PMS mood swings.
Being told your period pain is ‘normal’
and every woman deals with it – why
can’t you? You start to doubt yourself.
Maybe I’m imagining that this pain is
worse than I think it is? Maybe it is all
in my head? Maybe I’m overreacting.
19

THE
SYMPTOMS
Brain fog.
When your body and then your mind
pull you down so often the confidence
you have in yourself diminishes.
Thoughts are difficult to hold onto and
sentences near impossible to build. In
order to survive, over compensating
and faking it become super abilities.
20

THE
SYMPTOMS
A Saturday night in my house! My
boyfriend went to a family party in his
home town of Basingstoke which I felt
too tired to join him at.
It would have been travel, staying
overnight, and a busy social occasion
plus food and drink I didn’t want to
consume. I felt guilty for not going
and we argued about it.
He chatted things through with his
mum and felt differently about my
position eventually. A night in with
cookies and books is what I needed.
21

THE
SYMPTOMS
I tend to sit down all the time when
I’m in pain. Strangers have called me
lazy because I sit on the floor at a train
station. It’s hard having chronic pain
because people don’t see it.
Sitting down is crap pain management
but sometimes it’s all I have to get
through the day-to-day.
22

THE
SYMPTOMS
The shower challenge.
Sometimes this is what I feel like
doing. Can’t stand in the shower, take
a chair. I
haven’t resorted to this because of the
feeling of defeat, so self-care can often
feel like the biggest triumph of the day.
23

THE
SYMPTOMS
Transforming public
transport.
I feel a sense of dread when I see bus
stops without seats. This improvement
to public transport has happened
without consideration for those that
use their service.
People with chronic pain, invisible and
visible are always on the lookout for
places to rest in-between journeys.
I will purposely avoid bus stops like
these because my pain intensifies
when I’m stood still. Design such
as this makes me feel frustrated,
excluded, and incapable of managing
my pain well.
24

THE
SYMPTOMS
Shades of visibility.
At my worst I can’t stand for more
than 5 minutes which means even
the thoughts of travelling on public
transport without a seat fills me with
trepidation.
I’m young with an invisible illness
and I’m better walking short distances
than I am standing. When I’m using
a walking stick to help me stand I feel
embarrassed and self-conscious.
Sometimes people offer me their
seat which I’m grateful for, but I feel
uncomfortable accepting because
of how disability feels and how it
is perceived by others, hence the
umbrella to mask the struggle.
25

EVERYDAY
LIFE
Me V the floor.
Travelling at rush hour means no seat and a battle with my dysfunctional
pelvic floor and the actual floor for half an hour. I try to breathe deeply
and relax as best I can, but on even worse days everyone is crammed in like
sardines and there is agitation in the air, or lack of air.
It’s frightening to feel this vulnerable on a regular basis.
26

EVERYDAY
LIFE
No joy here.
This is a glimpse of what working full time with chronic pain looks like for
me. Every day I make a to do list based on priority which means certain tasks
just never get addresses. Better moments in between pain, fatigue, nausea and
dizziness are few.
27

EVERYDAY
LIFE
Fuel.
I don’t know how I would get through
the day without caffeine. Every day is a
battle with fatigue and I really struggle
to fight it. My morning coffee gently
motivates me to tackle the day.
It helps me survive work when I
crash and my energy levels are zero.
This simple cup symbolises the everincreasing
bags under my eyes.
28

EVERYDAY
LIFE
The Seat.
This is where you can find me, curled up with my hot water bottle and
blanket. The days where I am in too much pain to move, the recovery time
after my operation, and generally most evenings since my endometriosis took
hold. I spend most of my time here.
This symbolises the paradox of comfort and pain. It also reflects the
confinement endometriosis has brought to my life.
29

EVERYDAY
LIFE
Sometimes, just sitting in a chair is
tough. I can’t get comfy, my stomach
is throbbing. I twist and turn trying to
find a position that works.
30

EVERYDAY
LIFE
Today my bed was my office. I’m very
grateful that I have understanding
employers who let me occasionally
work from home if I’m really
struggling.
It’s days like this that stop me from
having weeks off work at a time.
31

EVERYDAY
LIFE
Resting.
Benches very much became my best friend when I was ill. I suffered from bad
anaemia and so could not walk very far at one point. I would sometimes feel I
was going to faint. I really enjoy walking through gardens, and it just became
a habit that I would look for a bench. Even if I didn’t use it, it made me feel
calmer to know that they existed.
It remains a habit now . . . even though I have had my hysterectomy, and I am
a lot better . . . physically.
Now though, with the depression I often find beautiful places to sit so that
I can try to acknowledge the amazing things that exist in the world. This is
another way that I manage to reboot.
32

EVERYDAY
LIFE
Failure to lunch.
Meal preparation is about constantly
seeking the path of least resistance.
Navigating nausea, pain and fatigue
is mentally and physically exhausting,
and I shamefully admit my loved ones
too frequently step in to help nourish
me.
33

EVERYDAY
LIFE
Better services.
Constantly waiting for a bus when I
have to get out and about. This can be
hard on my pain as the waiting seats
they provide are just rubbish.
It never arrives consistently, so I worry
about extra standing time on my
journey. It’s expensive.
34

EVERYDAY
LIFE
Work.
To work is a need in me.
I love my job.
I can’t work because I’m in pain.
Constant pain.
Pain even when I smile.
Pain even when I talk to you.
Pain even when I’m looking like I look fine.
35

EVERYDAY
LIFE
On a train to Tunbridge Wells for a music festival. I’m feeling apprehensive.
My boyfriend booked the tickets without consulting me. I love live music,
especially the genre of this event, but find the partialities of a festival situation
quite draining. It’s not a comfortable place to be when in pain.
Sometimes I feel I don’t advocate for myself enough. Other times I felt it
might be a good thing to be pushed out of my comfort zone? I’m hoping it
goes ok without too many symptoms.
36

EVERYDAY
LIFE
Filling out a job application form in an Ikea. I like writing from Ikea
occasionally because there are always seats, there’s a place to plug in my
laptop, and bathrooms are nearby. I’m in a lot of pain today and have a lot of
bowel symptoms. My period is obviously on the way. I feel like coffee doesn’t
help my symptoms, but I’m relying on this and chocolate to give me ‘energy’. I
feel nervous about applying for jobs.
I’ve been working on a freelance basis for four years, which is flexible when
I’m ill, but also means my income can be disrupted when I’m not well enough
to work or look for work. Will having a salaried job be better? I’m not sure.
I don’t know whether ticking the ‘disabled’ box in the monitoring section
will hinder me. I know in theory it should not, but I believe I’ve experienced
discrimination at recruitment stage for this in the past.
37

EVERYDAY
LIFE
Horizontal on the sofa with my
dog. Saturday. I had a spontaneous
celebration with some friends last
night.
Today I’m suffering. I barely ever
drink alcohol because my body feels
fragile enough and cannot deal with
the depletion. Today is a case study
in this, plus my endometriosis period
pain is in full swing.
I feel very annoyed at myself and
guilty.
Having chronic illness makes me
hyper aware of my lifestyle and very
self-admonishing when my diet and
lifestyle is anything less than pristine.
Logically, I feel I need to let off steam
occasionally, but this does not stop
the flood of emotion and guilt if I do.
I wore a ‘Pride’ t-shirt and glittery
jumpsuit in a bid to make me feel a bit
better.
38

EVERYDAY
LIFE
Tuesday. I’m working in Bristol this
week, freelancing in a creative agency.
I drive here from Cardiff, getting up at
5.30 am and driving at 6.30 am for an
hour or so, to miss the traffic.
I feel overly reliant on coffee recently,
particularly since I’ve gone from not
drinking it at all, to at least two cups
each morning. Sometimes I feel shaky
after drinking it, and it sometimes
triggers stomach pain, though without
it I’m even more exhausted.
I’m not in a position to turn down
these freelance opportunities, even if
they leave me really tired. I cross my
fingers each time I go in, that I’ll be
well enough to get through the day
and fulfil my workload.
39

EVERYDAY
LIFE
Friday. The walk home from work to
my car felt extremely difficult today.
I’ve been experiencing bowel issues all
week.
My stomach is swollen and I’m in
pain. It’s hot and humid outside. I
finish work at 5.30 pm and reach my
car at 6.30 pm. This walk should take
25 minutes, but I’m on a go-slow. This
photo shows me taking a break part
way through. I bought some coconut
water and chocolate for an energy
boost (which makes me feel guilty as
I’m trying to limit sugar).
I’m trying my best. I feel frustrated
I’m not as fit and energetic as I should
be. 6 years ago, I ran the London
Marathon. I feel miles away from this
type of energy.
40

EVERYDAY
LIFE
Friday night. I’m supposed to be
having dinner at a friend’s tonight, but
I sent my apologies and my boyfriend
has gone without me. I don’t tell my
friends the full truth about why I’m
not there. I stopped at Tesco on my
way home, to buy laxative’s.
I’ve run out of the ones I’m prescribed.
I am so bloated, and my bowel hasn’t
worked independently for two days
now which is the opposite of its usual
behaviour. I don’t know whether
these are endometriosis or crohn’s
symptoms. I’m in a lot of discomfort. I
spend the evening on the sofa.
I watch a film called Maudie about an
artist who has chronic illness. Her life
is pretty brutal but she achieves her
dream of spending her days painting.
I found a lot of solace in this. I feel
my life is going to get more difficult.
But if I can succeed in, and find peace
in, one thing I genuinely love in all of
this, it will be ok.
41

EVERYDAY
LIFE
Unused.
Don’t be fooled to think this is fully
stocked due to an active sex life.
This drawer is full for the ‘lack’ of sex.
The lack of intimacy that has crept its
way into my life. Forcing walls and
boundaries between my boyfriend and
I that sometimes seem impossible to
break down.
This symbolises a fear of inflicting
pain, which shows that endometriosis
impacts not only the person it resides
in but also the people who are closest
to them.
42

EVERYDAY
LIFE
Thursday.
Maslow’s Hierarchy of Needs came up as part of my friend’s PhD today. I
thought this was particularly interesting in terms of endometriosis, the first
time I’ve looked at it through this lens.
How am I supposed to experience love, belonging, esteem and selfactualisation
if I don’t have the safety of security of body and sexual intimacy,
or even what Maslow says is a basic physiological need of sex? My body feels
uncomfortable, sex can be painful, and my feelings toward sexual intimacy
has changed a lot in the past few years. It is a problem for my partner and me.
I wonder if we’ll break up.
43

EVERYDAY
LIFE
Relentless.
When describing my endometriosis
and excision surgery to people I often
compare it to weeds.
How weeds can spread throughout
your garden. Its persistent and
destructive nature stop flowers from
growing. In order to remove the
weeds, you need to get it root and
stem. But there’s no guarantee the
weeds won’t grow back.
44

MEDICATION
Contraception pisses me off! The
side effects are awful, no matter
what option you choose and I feel
like it’s even worse when you have
endometriosis.
I’ve been told contraception won’t
affect my endometriosis at all (which
I refuse to believe). I’ve been told
almost every option will be better for
me and they never have.
It is a really tough decision and
sometimes it feels like you just have to
accept that using contraception will
make you feel awful.
45

MEDICATION
The Magic Pill?
Every time I speak to a doctor or nurse regarding my endometriosis I
get lectured that I need to take the Pill in order to ‘stop my pain’ ‘stop the
endometriosis from growing’ and ‘to improve and preserve my fertility’.
Regardless of the fact that I want to try for a baby, I feel pressured to take
something I am not comfortable taking. Not entirely sure that it actually
will help. I previously used to take contraceptive pills, which I had severe
reactions too, they made me very unwell, depressed and my initial symptoms
for endo first started. I feel conflicted as I’m being ‘sold’ that the pill is going
to help fix me, whereas I know first-hand the effects it can also cause.
There is a lot of speculation as to whether the Pill does in fact help or hinder
endometriosis. I find the whole situation confusing, not knowing what to
believe and what is best for myself and my body.
46

MEDICATION
I sometimes wonder how many
paracetamol and ibuprofen I’ve taken
in my life to just get through a normal
day.
47

MEDICATION
This one is a bit of an enforced coping mechanism. I don’t really want to be
on medication for depression, but I realise that I am no use to anyone without
it. Every morning without fail I take these pills. I have always resented them
in a way because they always felt like a partial fix. I was offered these so freely
by the GPs but they never looked at the support that I really needed.
As my symptoms increased, so did the medication . . . but not any holistic investigation. I was on fluoxetine, mefenamic
acid and tranexamic acid. Still the pain and the blood loss continued. I felt that I have had decades of these capsules where
perhaps what I actually needed was simply information, and support through an illness. The sense of relief when I finally
found a consultant that would listen was incredible. Even though, however, his sense of urgency failed to match mine.
Eventually I had to go to a private consultant who spent three months building me up- with iron tablets and zoladex before
he would even consider operating as I had become too ill. At this point, thanks to him, I began to feel like a valued human
being again. He listened and advised, he explained and he treated.
48

MEDICATION
PAIN.
Paracetamol 8 a day.
Gabapentin 300mg 11 tablets a day.
Anxiety tablets 3 a day.
Morphine/tramadol for my pain
spikes.
HRT.
Migraine tablets.
This isn’t the life I want.
49

MEDICATION
I had my bi-monthly infusion of vedolizumab for Crohn’s disease this week.
My symptoms of endometriosis were confused with Crohn’s for years. I knew
something else was going on inside my body.
But because I’d already been diagnosed with Crohn’s, doctors said it must be
that each time I went to the GP. This still happens when I go to the GP to
discuss new symptoms or pain changes.
50

GRATITUDE
For the good days, for loved
ones, for distractions and for
moments of joy and comfort,
even on the darkest of days.
Today I had a good day, no aches and
pains, no painkillers – and what do
you know the sun came out!
That’s the problem with endo, just
like the weather, it can be pretty
unpredictable.
51

GRATITUDE
Holidays can be ruined by a sudden
bout of excruciating pain – luckily this
one wasn’t. I was so grateful that I was
able to do everything I had planned
without any issues – it’s important
when you have chronic pain to take
advantage of the good days.
52

GRATITUDE
This is the view across the pond that I sit at on the uni campus when things
get too much. I still retain the depression that I had before the hysterectomy.
It often unbalances me because I thought that the operation would be a
magical ‘cure all’ . . . but it wasn’t.
I sit to think and try to gain perspective. Again look at reflections, and
remembering that there is always another way to look at things.
I also enjoy the fact that this pond sits in the centre of extremely old and
extremely new buildings. It provides a type of bridge across time, reminding
me that there are bigger problems than mine in the world.
53

GRATITUDE
Wishful Thinking.
Trying to stay positive and optimistic
isn’t my strongest attribute, although it
is something I desperately need to be
more of. Although my head is filled to
the brim with fears and doubts, I do
strive to be hopeful.
Hopeful for a happy future. Hopeful
for a family. Hopeful that my
pain doesn’t return. After years of
struggling and fighting to get better,
having to sacrifice a normal life along
the way: career, nights out, day trips,
friends, holidays, family occasions etc.
There are a lot of things I’d like to
achieve, dreams to try make reality
and wishes that I hope will come true.
54

GRATITUDE
Comfort.
These little furry feet belong to one of my cats. My little fur babies. Without
them my battle with my endometriosis would have been unimaginable.
They have given me love and support by just being them, and have provided a
distraction from my own ordeal. They never judged me for spending my days
in my pyjamas, curled up on the sofa and having unkempt hair. They always
give me an abundance of cuddles in times of need.
Not having children, these two steal all my love and attention. They have
given me so much joy and comfort through my trying journey. It is truly
amazing how animals can have a calming healing presence on you.
55

GRATITUDE
Grow Through What You Go
Through.
I have accumulated several scars
from the surgeries to tackle my
endometriosis. My battle wounds. I
originally felt uneasy about my scars,
the constant little reminders of the
pain I’ve been through. I also doubted
my boyfriend would still find me
attractive with them dotted around my
torso.
One day I asked my boyfriend what he
thought of my scars and if he thought
they were unattractive or repulsive. He
told me that he loves me for who I am,
that my scars are a part of me and they
show the journey I’ve been on. It made
me realise that I need to be kinder to
myself.
To not be so self-critical, self-blaming
and to appreciate my body more. Most
importantly I need to forgive myself
as I’ve often felt at battle with myself
whilst fighting this condition.
56

GRATITUDE
Good Ole Faithful.
My water bottle has become a dear
friend to me over the years.
A warming comfort in times of pain.
I have a selection of hot water bottles
and heat bags for every circumstance,
depending on whether there is a
kettle or microwave, either way I am
prepared.
It has become a necessity to my
everyday life. This simple item helps
improve my quality of living with a
chronic illness.
57

GRATITUDE
Partnership.
My boyfriend has been there
throughout my entire endometriosis
journey. Through the initial
symptoms, continuous GP
appointments and countless tests.
By my side in all of the hospital
waiting rooms, the consultations and
beside my hospital bed after surgery.
Watching me helplessly as I’m curled
up in pain knowing nothing he can do
stop it.
He has seen it all. Despite his
continuous support and strength
he has given me – there is a strain
between us that endometriosis has
caused. It has impacted negatively on
us to the point it has nearly destroyed
our relationship.
For he has also suffered with me
throughout this journey.
58

GRATITUDE
Monday. My partner’s alarm goes off
at 6 am each day, so he can get to his
work commute.
I often feel I need a lot more sleep
than he does, but when I can I try to
make the most of the morning. A huge
and beautiful park is just opposite our
flat, and today I managed an hour long
walk there to start the day. If I’m in a
decent place, this can energise me.
59

GRATITUDE
Pleasure.
Living with chronic pain I still try
really hard to keep that joy in my life,
like everyone needs it.
There are days when it’s really hard
and I’ve let things get me down. But
then I see joy in the smallest of things
that I’ve made happen. I planted this
rose. I made it happen. It made me
smile.
60

GRATITUDE
HOPE.
Hope gives me the ability and coping
tools to keep going.
Comfort came to me after a painful
and stressful time. In Citizens Advice
Bureau talking about benefits etc.,
because of sickness from work due to
endometriosis.
To be told that I’m lower than lower at
getting anywhere to live because I’m
on my own. Without children.
I can’t help feel resentful then.
But this little fella was there to greet
me when I came out.
61

GRATITUDE
Purpose.
Coping strategy is him. He brings me comfort, security, love.
Something to live for.
62

GRATITUDE
Love.
My partner gives me strength in many ways. He thoughtfully prepares meals
for us both to eat on a regular basis.
This may not be ‘endo diet’ friendly but sometimes comfort food is the better
option. His kindness, understanding and even just his presence brings me
peace.
63

GRATITUDE
Social Networking.
From the comfort of my home the
internet has empowered me.
It allowed me to learn in depth
about endometriosis/adenomyosis
and related conditions. I researched
specialists near me and sought a
second opinion after being dismissed
and told my pain was neuropathic.
My life is better for it. Advocating
online for better treatment and
accurate understanding provides me
with comfort, hope and connects me
with fellow sufferers and like-minded
individuals and organisations.
These tools used well ultimately
reduce loneliness and isolation which
chronic illness creates the perfect
environment for.
64

GRATITUDE
Support group meetings.
Emotionally, meetings are not always
easy to attend, but speaking openly
to other people who know first-hand
what living with these issues is like has
helped me a lot.
I’ve made new friends that understand
my condition in its entirely and the
fears it brings. We advocate for better
treatment and awareness together,
which helps me feel less isolated and
more hopeful.
65

GRATITUDE
Sweet Williams abundance.
Flowers for two inspiring new friends. I find socialising difficult sometimes
but I know it’s important to stay connected and throw myself into situations
that scare me. After speaking out about my struggle with endo I sometimes
think when people are nice to me it’s because they feel sorry for me. This is
nonsense I know.
66

GRATITUDE
Light and dark.
I tend to take quite a lot of pictures
of trees as I think they are amazing.
There is a wisdom in them, as they
calmly stand watching over changing
events.
I stopped to take a picture of this one
because of the shadow and light. One
of the ways that I use to manage my
depression is to remember that whilst
dark moments exist, so do the sunnier
times.
The two balance each other out, and
I try to use these thoughts to balance
my own thoughts.
67

GRATITUDE
Light at the end.
This is the view from below the dome in the Christ the King Cathedral in
Liverpool. I am not particularly religious but have a sense of belief. When I
can’t find quiet anywhere, I often visit a church as they offer a sense of calm.
I was taken by the dome itself, the cathedral had sort of dimmed light
until you looked up, and could see all the colours being illuminated by the
sunlight.
On the day I had been feeling fairly low, and very “peopled out” . . . and
my mood was reflected by the sombre dimmed light. Looking up however
reminded me that the world is bigger than just me, and that dark is often
countered by the light. It provided a sense of reflection and hope which made
me feel better to face the rest of the busy day ahead.
68

GRATITUDE
Companion.
My biggest coping mechanism and support while I was ill was my partner.
She helped me to remember things at appointments, worked around me
while I was sofa-bound, and helped me to pretty much stay alive when my
red blood count fell to 7.
She quietly watched over me without ever complaining – despite the cleaning
up and increased washing as I lost more and more blood.
She never voiced her worries or fears. But I know that I would probably not
have made it through without her.
69

THE INVISIBLE
BURDEN
The emotional and psychological impact
of living with chronic pain, an uncertain
future, financial worries and lack of care and
validation from healthcare professionals in
the NHS.
Grief, loss, adjusting to life around symptoms, researching
and trying to find the right way to get health care
professionals to listen and believe what those with
endometriosis and adenomyosis are living with.
Some of this suffering is avoidable. Doctors often turned
away from their pain and denied their experiences.
Getting a diagnosis can be a battle but it’s not the end of
their fight.
70

THE
INVISIBLE
BURDEN
My period is due. Normally I avoid
scheduling anything on the first
day because it can be a nightmare,
but that’s not how life works. My
boyfriend’s’ favourite band Bon Jovi
are visiting and he’s delighted to go.
I take my painkillers and pray I can
make it through – I don’t want to be a
burden. I make it all the way through
to the final song without any issues,
and then it hits.
The tears come to my eyes. We have a
long journey back home. If you stayed
at home every time you had an issue
with endo, you’d never leave the house.
71

THE
INVISIBLE
BURDEN
I don’t know if yoga actually helps
with my pain – I suspect not, but it’s
really great for helping me de-stress.
When I feel anxious or overwhelmed
it can really exacerbate my pain. More
ways of tackling the mental side of
chronic pain are so needed.
72

THE
INVISIBLE
BURDEN
Anxiety.
I went to see my doctor this week. She
asked me to do my blood pressure on
the way out. I did, now I have more
anxiety because I Googled it and it
says ‘high’.
I hardly drink. Drank a few times this
year.
I don’t smoke.
I eat more fruit and vegetables than
anything else.
I don’t eat high fat foods.
I don’t eat processed foods.
One: yes, I’m overweight but two: I
can’t exercise at the moment due to
pain.
It’s maybe my meds? Then the
ambulance man says it’s not too bad.
Gosh does this ever end?
One disease creates another disease.
Please don’t let me have high blood
pressure.
73

THE
INVISIBLE
BURDEN
Healthy.
Really a hospital meal. Main choice meal was a jacket potato. I literally got
one jacket potato and some butter.
No salad or vegetables.
My needs are not being met here.
Ended up in hospital due to pain. I hadn’t eaten all day due to my pain,
no breakfast, and no lunch. Full of gas/air, morphine, paracetamol and
gabapentin, timings of being brought into hospital.
I was hungry in the evening.
74

THE
INVISIBLE
BURDEN
This week my brother has lived with
me while he did his work experience.
I’ve had bad spikes of pain all week
but no matter what, his needs have
come first. I’m in admiration of all the
mom’s out there who have endo and
kids – sometimes I worry about how
I’ll cope if I have children.
75

THE
INVISIBLE
BURDEN
Mum.
I’m so lucky to have a mum who cares for me endlessly. I can’t function alone.
She’s an incredible support to me. I love her so much and I can’t imagine life
without her.
The future scares me because I know she will need me more as time goes
on. I just hope I can look after her as she has me all of my life. I worry I will
struggle because I’m used to feeling like a failure by just existing though I
carry on regardless. Just experiencing chronic pain makes me feel this way.
76

THE
INVISIBLE
BURDEN
Body Confidence.
Though I’m sure most women have
body hang-ups and insecurities,
suffering from endometriosis surely
does amplify these matters.
The swelling of my stomach and the
scars from surgery make me anxious
about exposing my body in public,
even in private, behind closed doors I
don’t feel comfortable about my body.
I could no longer wear a bikini to the
beach as I felt too abashed and bought
a swimsuit to hide my belly and scars.
The paranoia that people will judge
me and my tattered body.
I know this is all in my head but I can’t
help but feel embarrassed and nervous
about exposing myself, regardless
of the fact there is nothing to feel
ashamed about. These insecurities are
an added burden I struggle to battle.
77

THE
INVISIBLE
BURDEN
I feel like endometriosis affects my
confidence. It’s hard to feel sexy
when you feel like all you talk about
with your partner is all the pain and
symptoms you are experiencing.
Because I have chronic pain I
constantly feel like an ill person who
will never get better – what’s sexy
about that?!
78

THE
INVISIBLE
BURDEN
Waste Management.
Can’t help but feel when I see a skip it’s waiting for me to climb inside.
79

THE
INVISIBLE
BURDEN
The power of kindness.
After an 8 month wait since my last ultrasound results were for some
unknown reason unattainable I finally received another scan. During my last
scan I was told that my ovaries appeared polycystic.
After having stage 4 endometriosis excised in 2017, knowing I didn’t have
an issue with cysts felt like a silver lining. It was a relief to learn that this
observation appeared to be a mistake. This time my sonographer engaged
with me throughout the scan. She moved the screen towards me and
described what she could see in a reassuring and informative way.
Time spent chasing appointments, conclusions, seeking the right treatment
and specialist is exhausting. It’s difficult to value your own wellbeing when
seeking help feels as though you’re swimming against the tide.
80

THE
INVISIBLE
BURDEN
Wish it was as easy as they make it
sound. Sunday morning, I need to call
to get advice on dosage for meds for
making sure my pain doesn’t escalate
and I end up needing an ambulance.
1st call I made I got given the advice
to call my doctors Monday morning.
That’s too late then.
2nd call I made to them asking for
the same information I got sent an
ambulance.
The ambulance guys were fantastic.
I couldn’t have asked for better care
from them. But if I could’ve spoken to
a human that understood what I was
saying then maybe I wouldn’t have
needed that service. When I arrived I
could see how busy our local hospital
was. It was incredibly busy and I felt
so guilty needing care from them.
The ambulance guys even said to
me to stop apologising. I always feel
guilty that I have this illness. Guilty to
everyone around me. But I’m home
now.
81

THE
INVISIBLE
BURDEN
Health Admin.
I regularly feel overwhelmed by
the preparation required for each
appointment request for help.
As a result of years of dismissal I’ve
had to learn to advocate for myself.
Meeting new doctors frequently is
stressful as ignorance concerning
female pain is prevalent.
I feel immense pressure to be my most
articulate in the hope that I will be
taken seriously.
82

THE
INVISIBLE
BURDEN
Understanding.
Constant reading evidence to support
my case for a second opinion for my
hysterectomy. Is it damage to my
nerves or is it back because it wasn’t
removed properly.
83

THE
INVISIBLE
BURDEN
Need to not have this life.
Constant appointments.
Yes, I have some support from them.
But it’s not without me fighting to get these appointments. To fix me, make
me better, I shouldn’t be having to go down this route again, all because I
potentially wasn’t fixed right the first time.
84

THE
INVISIBLE
BURDEN
Letters.
The dreaded letter from the hospital, I have quite a few now. The originals
span back to 2015, though this collection is from the last two years. I feel
lots of anxiety opening these letters. Is it another cancellation? Has my
appointment been postponed and pushed back? The fear of what they are
going to say. Reading about yourself in third person when it’s a forwarded
copy of a letter to your GP surgery makes you feel so apprehensive.
To have your diagnosis and treatment written formally with technical
terminologies is surreal. It makes it real, which on one hand is great as it
proves that it is not just all in your head, but on the other hand it’s frightening
as it is real, this is actually happening. Also, the formality of the letter, you
live with this condition from your perspective, feelings and emotions and to
read about yourself in a professional, technical and impersonal manner, can
be quite surreal.
85

THE
INVISIBLE
BURDEN
My final exhibition for foundation
studies art and design, on the final
day it is on show. Thursday. I looked
at developing a visual language to
describe emotional pain, in this case
related to body image issues.
In doing so, I realised this language
could also be used to describe
physical pain so I’m seeing further
opportunities in the work. The title
is ‘Attack + Defend’ which feels
appropriate to the experience of
chronic illness.
It seems like an ongoing attempt
to fend off attacks to my body.
Expression through art is very
important to me. It helps me find
a ‘flow’ state which is a positive
distraction and channels my thoughts.
It also helps me to feel productive and
gives me a new measure of success.
Chronic illness affects my confidence,
social life an ability to earn money.
Making art at home is something I can
do even when I’m not feeling my best.
It feels like a ‘new’ social life.
86

THE
INVISIBLE
BURDEN
Sunday evening. Listening to the Make Tiny Changes album. One of my
favourite musicians, Scott Hutchinson committed suicide in 2018. This
album is a tribute to his life, consisting of covers of his songs by artists he was
friends with. I have a good old cry to this. Music is very important to me, and
I feel my state of mind is better if I can listen to some every day. This one is
hard to hear, though. I love the music but find it very sad that a person whose
lyrics deliver comfort to so many people, couldn’t bear to stick around on this
earth. I relate to the depression which emanates from many of his lyrics.
Everyone has a story we know nothing about. My story has been made more
difficult by chronic illness, and sometimes it feels there is little help available.
Financial help if you’re ill and self-employed? Counselling to help with the
effects of chronic illness? I’ve battled for years just to get help with the effects
of chronic illness. I’ve battled for years just to get help with the physical side
and have not yet found support for these other factors. Feeling emotionally
tired. Thank goodness for music. I’m thankful and grateful to Scott and his
band.
87

THE
INVISIBLE
BURDEN
Invitations.
Weddings, engagement parties, baby
showers: they all seem like something
to celebrate and be joyous about, but
I can’t help feeling a little sad. The last
three years I have spent in and out of
hospital, in chronic pain, too ill to go
out. Plus, having two surgeries and
time off to recuperate from them. I
feel as though I’ve lost these years of
living a ‘normal life’. It’s as though
everyone is moving forward but I’ve
been stuck battling this illness and
now feel somehow left behind.
There are also the added insecurities,
those inner demons, thinking:
‘Who’d want to marry me with this
condition?’, ‘If I can’t have kids then
will he still want to be with me?’, ‘My
body clocks ticking what if it’s too
late?’ It would be fair to say I can’t help
but feel a little bit envious, although
that saddens me to admit as I am
so happy for everyone who’s getting
married and having babies. I just hope
my life starts to move forward too.
88

THE
INVISIBLE
BURDEN
Final Countdown.
Time has become an increasingly
heavy burden on me since my
diagnosis.
I feel the pressure every aching
moment. There is a ticking tock
against my fertility. A time bomb no
one is exactly sure of. The uncertainty
surrounding my fertility plagues my
relationship. As my age and condition
reduces my chances of being a mother
dramatically.
There is also the continuous waiting.
Waiting for hospital appointments that
keep being cancelled and postponed.
Waiting for test results. Waiting for
answers that no doctor seems capable
of answering.
89

THE
INVISIBLE
BURDEN
Fragility.
I feel so fragile most of the time, it’s
unreal. Whether it’s from pain, fatigue
or emotional distress. I believe I have
become ever more sensitive since my
diagnosis of endometriosis.
There are certain topics that will now
trigger me emotionally to bring me
to tears. I’m physically weaker now, I
am unable to lift heavy items or bend
down without causing pain. I am also
very aware that this opinion is shared
amongst others in my family and
friends.
It isn’t a great feeling, knowing that
people think you’re oversensitive,
delicate and unfit, even though it may
be true.
90

THE
INVISIBLE
BURDEN
Curtains.
These curtains symbolise the feelings that I encounter as a result of my
depression, and the feelings that I had before the hysterectomy. In addition,
they also show one of my more negative coping mechanisms.
The curtains are letting light in to show that there is indeed a world out
there, but that there has been a choice made to ignore it. I often used to feel
too unwell to join in with what lay beyond the curtain, and often with the
depression find it difficult to face the world – quickly getting “peopled out”.
The drawn curtains provide a safe and quiet space where I can hide out. I
enjoy being on my own quite a bit anyway, but when the black hole is in sight,
I need solitude in order to cope with things, and to process my thoughts.
It feels like a negative thing to do, and I can become dangerously accustomed
to not seeing anyone – but try to monitor it, and use the solitude to help me
back to the world. I am lucky enough to have an understanding partner and
amazing friends who gradually coax me back to the real world when they see
me approaching this point.
91

THE
INVISIBLE
BURDEN
Scared.
Wednesday I couldn’t take much
more, spent the day in sobs of tears,
terrified for my future. Due to pain I
cannot work.
Scared of becoming stuck in the
poverty trap.
Scared I’m going to lose my home.
Scared I’m going to have to give my
dog up.
Scared I’m going to become old.
Scared I’m going to breakdown.
Scared I’m going to live my life in
constant pain.
Scared I will never meet a man to
share my dreams with.
Scared I will always sleep alone.
Scared I won’t be able to walk.
Scared I’m never going to be able to
afford to live.
92

THE
INVISIBLE
BURDEN
Sunshine.
Vital to life. The sun is meant to make
you feel alive. I’ve never felt so unalive
in this moment. I’ve had a lot of
worries, this week as I got my sickness
benefits through and I have no idea
how I’m going to survive.
Endometriosis has taken my ability
away to have children and now it’s
taking away my ability to live in my
house and having no children I’m
not entitled to get a house from the
council but I will fight to get some
more help.
93

THE
INVISIBLE
BURDEN
Loneliness.
Suffering with an invisible illness like
endometriosis can make you feel very
lonely and isolated, as you are fighting
a battle within yourself, and nobody
seems to see your pain or understand
what you are going through.
Over the years I have increasingly
lost contact with many friends as my
social life falls into obsolete. The life
I used to lead doesn’t exist anymore
and is replaced by constant pain and
being camped out on the sofa with a
hot water bottle and painkillers. The
distance that forced its way between
my boyfriend and I, creating barriers
across our relationship that seem
impossible to break down.
With our intimacy strained by the
pain that occurs, frustration caused
by my continuous chronic ailments
and him not being able to help, has
pushed us further apart. I have felt
increasingly lost at times along my
journey. Surrounding endometriosis is
a lot of confusion, misunderstanding
of what it actually is and how it affects
people. This ostracizes its sufferers
even more so.
94

THE
INVISIBLE
BURDEN
A silent statistic.
A friend and endo sister took her life last week. She was 36 years old
and desperately wanted her pain to end. With her suffering routinely
dismissed by the health system for most of her life, and having only
poor insufficient treatment available to her, this utterly tragic and
preventable outcome came into being.
“Chronic pain has been shown to be associated with depression. This is not
a surprising finding, as anyone who has lived with pain for any significant
amount of time will know that the social isolation, inability to participate
in normal activities of daily life, and sheer exhaustion, can lead to feelings
of depression and hopelessness. Patients with chronic pain have a 2-5x
increased risk for developing depression, and each condition affects the
other: depression can worsen the perception of pain, and pain can worsen
depression.
95

Furthermore, studies have shown that when pain is moderate to severe, impairs daily functioning, and is difficult to treat, it
is associated with worse depressive symptoms and outcomes.
We need to move towards recognition of endometriosis as the life-altering disease that it is. We need to continue to
strive to make effective treatment accessible for all patients with endometriosis. We need to make all care providers
understand the severity of the pain that endometriosis can cause, so that the pain itself can be treated appropriately. And
we need to recognise the potential for depression and even suicide, and bring these difficult discussions of the emotional
consequences of living with endometriosis out into the open.” -Philippa Bridge-Cook, PhD, The Endometriosis Network of
Canada. One in four people with endometriosis have contemplated suicide. *
*Editor’s note: In 2019 the BBC released the results of their survey of over 13,500 respondents with endometriosis, more
than 50% of those respondents had considered suicide.
96

Living with
endometriosis . . .
Those living with endometriosis and/or
adenomyosis are not receiving adequate
care.
As a result of this they have to fight for better treatment
and work out their own coping strategies to meet their
own needs. They rely on loved ones for emotional and
practical support. They are impacted in the workplace and
financially.
Their future may be uncertain.
They often experience periods of depression or anxiety
due to their condition and how they have been treated as
patients within the NHS.
After years of being dismissed, disbelieved and having
their experience diminished they are wary of healthcare
professionals and find it hard to trust them.
People living with endometriosis/adenomyosis need
collaborative, professional, empathetic, educated care,
provided by healthcare professionals that listen to them
and believe them. The women in this study discussed how
their symptoms were often labelled as psychological or
psychosomatic, when the opposite is true.
Endometriosis and adenomyosis can have a devasting
impact on emotional wellbeing and mental health.
A lot of the suffering discussed in this study could have
been avoided if the women were listened to, believed,
diagnosed sooner and offered appropriate and continued
care.
These women accept that their illness is chronic and
painful but they need others to accept this and offer
support instead of judgement.
The women in this photograph are the co-researchers of
the study. Ria, Lara, Shannon, Lisa, Kate and Clare. They
are pictured during the second photovoice workshop in
the middle of data analysis. This photograph was taken by
Clair Dempsey, the postgraduate researcher and facilitator
of the study.
Acknowledgements:
Thank you to Prof. Andy Turner, Dr. Elizabeth Sparkes,
Dr. Faith Martin, Dr. Heather Sears and everyone at the
Doctoral College, Coventry University, to all the staff
and postgraduate researchers at the Centre for Intelligent
Healthcare, particularly Sophie Krumins and Rebecca
Seymour, to Gabriela Matouskova and Hope For The
Community, to Rachel Mosses and everyone at Lanchester
Library. Clive Dixon and team at the Inkwell, Coventry
University and Kaye Sedgwick-Jones for graphic design of
this photobook.
Special thanks to Dave Dempsey and the friends and family
of the co-researchers. Thank you to everyone who attended
the exhibition and showed their support.
Front cover image and dedication image from Storyblocks.
97

Dedicated to the memory of Faye Powell
10/8/1982 – 6/6/2019
98

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