LIVING WITH ENDOMETRIOSIS

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

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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