top of page
.png)
Belly Buttons By Clare Gregory
Endo has taken from me...
What has endometriosis taken from you?
We asked 166 people diagnosed with endometriosis what endometriosis has taken from them.
​
Disclaimer: The following comments are the individual thoughts and opinions from 166 survey participants who have endometriosis.
My career in fashion
My 38 year old son hasn’t spoken to me in 8 years I lost a pregnancy I was a fashion designer in NYC garment district when endometriosis took ME out. I was hand painting a dress for a client and my boss (it was a big deal) and I miscarried while painting but it was a huge “mess”. I have blocked a lot out… this was 26 years ago?
My freedom to move
Everything. I’m 24, have to use a walking stick or crutches to walk. I can barely move. I used to do multiple forms of dance, swim for a swimming club, do gymnastics etc, but endo has slowly robbed me of all of that. I am now existing and often think i can’t do this anymore
Negatively impact
Endometriosis has changed my life and not in a good way I don't feel like myself before I was diagnosed endometriosis has also burdened me financially because I can't work because of endometriosis pain inconvenient flare-ups also my Mobility has been affected by endometriosis infertility
My personality
My outgoing personality. I used to be so much more fun and active. Now, it feels like I'm always either in a flare up, recovering from a surgery, getting ready for a surgery, or resting my body for a few days after having 1 normal day.
My Identity
That’s a hard one, but i would say it has taken my identity. Who I was as a person and who I am now, are two different people. And I’ll tell you this I miss who I was. Endo had taken who I was, and I can’t get it back
My future plans
A normal life where I can function every day & get things done , career , children , being present able to go to family events , time with family & friends , Being able to plan anything . and 1 organ .
Strained relationships
Endo has made me lose babies. It has put a strain on my relationships both intimate and friendly. I am not able to be the active fun mom for my 2 kids, and it has made me quit doing the work I absolutely loved doing. (Demolition/construction). It has made a huge impact on my mental health for various reasons. I am struggling to conceive currently.
My safety
Everything. My mobility. My mental health. My friends (although good riddance because it goes to show who people really are). My sense of safety. My faith in the medical world and in people in general. My peace. My life. Sewing. My cognitive function.
Opportunities
Education, professional opportunities, belief in myself that I am not making it up that prevents me from seeking any medical attention even when emergency services are warranted for non endo related issues
Time
Time to do things with my kids. I feel old before my time and I know that by doing too much I will be exhausted and in pain later or the next day.
My quality of life
So many aspects of my quality of life, my job, my friends, my family, my savings, activities with my daughter, time outside, socializing, etc
My confidence
Freedom, ability to be spontaneous, years for me to get my drivers license and having to accept I couldn’t drive manual due to the flares, confidence in future relationships,
My hope
Most relationships I had with friends, and family unfortunately. It has also taken away my hope in my own future and my hope in finding a career that makes me happy. Now I just hope for a job that offers insurance and pays my medical deductibles.
Restrictive parenting
Endo has affected me both physically and mentally but one thing that really hurts is not being able to do the job I love so much on a full time basis. It's also restricted me from being the mum I want to be to my kids
Life experiences
Years of my life. I’ve cancelled so many experiences due to uncontrollable, unpredictable pain. I spent my whole life telling people I was out here to be a mother. Now I’m having to accept it may never happen for me.
Enjoyment
So many days spent profusely bleeding and in pain under a blanket! Time I could have spent working so not appearing unreliable, enjoying time with my family, being out and about. One of the worst days was doing a Gruffalo trail with the family, it was a lovely sunny day and the kids had a blast but I was in too much pain to enjoy it.
My trust in medics
My confidence My trust in medical professionals. I do not trust that they will diagnose and treat me appropriately, if I ever become ill or suffer with anther medical condition. I fear that if I had cancer that this would be ignored / dismissed until end of life / grade 4. A family My ability to live a normal lifestyle My career A stable future.
My self-confidence
My self confidence. I doubt myself more and question myself . I’m not taken as seriously at work because of my absence record. Mentally living with the pain makes you exhausted. Constantly explaining and feeling like you need to defend yourself is tiring. Financially I dread to think- baggy clothes, heat pads, period products and prescriptions all add up! I’ll probably need to reduce my working patterns which will affect my salary and pension.
Everything
Honestly? What hasn’t it I used to be very active I would ride quad and fish and was barely ever home. My fiance and me used to have a great sex life and now I cringe even thinking about intercourse. It has taken away my chances of having my own family. It feels like endometriosis hasn’t taken damn near everything that once made life enjoyable.
Employment
I feel very fortunate that I only experienced really severe symptoms for about nine months. However, those months coincided with a professional career change including interviewing for new jobs. This has contributed significantly to my currently being unemployed.
Mental health
The pain has made my mental health a lot worse. I have bipolar disorder and the pain from the endo causes the symptoms to be worse. I also have not sought to get pregnant due to the issues the specialists think I may have due to the endo and the chronic anal fissure I have been left with.
Being active
My social life ability to work full time ability to take part in sporty outdoor activities that I love, like hiking and cross country skiing energy levels ability to do house work as needed, and to help my parents which are elderly. instead they have to help me ability to just buy a snack or meal somewhere. As I need to know what it is made from, and have to avoid so many types of food. boyfriend family
My body
I wear numbers on my skin as conseguences of what Endometriosis has taken away from me: 3 operations behind me - 2015, 2021 and 2023. 11 small holes from laparoscopies adorn my stomach, only 1 fallopian tube, 1 miscarriage after 3 cycles of hormonal stimulation, a 15-year relationship that ended after this incident. Countless scars from adhesions, both physical and emotional and I do not recognise the shape of my body anymore.
My aspirations
Endometriosis took so much from me, I had to build a new life around it. I would be a different person, a mom, a grandmother, a professional, a traveller, a dancer, an independent person, a healthy body, if I did not have Endometriosis. But what hurts the most, is that I could probably be most of those things if only one person, one doctor had taken me seriously when my symptoms first started at age 10.
My worth
Fertility. Energy. Health for long periods. Hope for much of the last 10 years. I'm praying life will only improve now. It has held me back within relationships, my career, used up all my savings, lead me to borrow money (for surgery) and made me feel utterly worthless in the prolonged absence of a diagnosis.
Running errands
It used to take away quality of life for me. I was depressed and hated life because I was exhausted and in pain. Especially my bowel endo pain took everything from me. I was scared to even run errands because if I had to randomly use the bathroom the pain was blinding
My relationship
My hope, my enjoyment and pleasure with sex, my bond with my long term partner, my belief that u could have children if I wanted to, my income (due to time off work for pain or recovery from surgery), my comfort and relaxation, my trust in doctors, my trust in myself.
Myself
My entire character; I feel as though I’ve never truly gotten to be myself because this has always been hanging over me. And now I feel as though I can never reach my full potential in all aspects. One thing that always stings is my physical fitness, I was on the course to play nationally in my sport and it just crumbled around me and at the time I blamed myself.
My dreams
It’s ruined my education, my career goals, my family life, my dreams of having children, my social life, my day-to-day quality of life and my romantic relationships. It’s impacted my finances and my mental wellbeing.
Spontaneous
My social life, my work life, the ability to be spontaneous, not being able to eat some of the foods I like anymore, sometimes not being able to move in the ways or pace I want to due to pain and the complications it can cause at times (ie difficulty walking), friends who don’t really bother with me anymore, my confidence and self esteem, my dating life.
Happiness
Everything Happiness Career Finances Hopes & dreams Strained and lost friendships relationships & family dynamics My ability to have children And so on the list is endless
Security
My entire life: career limitations, loss of financial security, time spent with family, friends, and loved ones, my love for exercising, my mental health, and my identity.
My income
My job, my ability to have penetrative sex, my lower body mobility (hopefully temporarily), my income, my self-esteem, my mental health, potentially my ability to carry and birth a child
Strained
so much, so many missed opportunities or opportunities affected by pain, or even just worry of pain. Strain on relationships. Feel my friends think I exaggerate it and even get bored about it all.
Play
My quality of life. The ability to walk and play with my daughter during flare ups / ovulation / period. Intimate times with my partner, my self confidence, loss of a sense of self.
Intimacy
My ability to enjoy intimacy, to love having sex with my partner without being worried I am going to be in pain. My confidence.
My past
Independence, Quality of life, Time with my daughter, Sense of self and identity, Happiness, Self expression. Most of my teenage years sadly, My social life.
My future
My quality of life and freedom to live my life as I would like.. My future as I know my future dreams will probably be unattainable due to endo.
Pregnancy
My chance of natural conception - and my conception when I finally did conceive naturally, for the very first time (ectopic pregnancy, Nov 2023).
Social life
My social life, certain career paths, sports, ability to plan trips/activities spontaneously with having to check when my period is due
Normaility
My life/ability to live my life normally 😞
My relationships
My job, relationships, my full mobility
Finances
Concerts, financial stabilty, mobility, my body
My Vitality
My career, happiness, sex life, energy, and vitality
My life
My life as I knew it
Trust in doctors
It took my career, it took my ability to stand on my own, it took my joy, it took my ability to trust doctors
Activities
Social life, chance to have children, lots of various activities that I would love to do.
Identity
Joy. Rest. Identity—people saw me as the person who was always in pain. Ability to be a biological mom.
Savings
A relationship/ friendships, all my money/ savings, career, and made me anxious and at times suicidal.
My hobbies
My life. I cannot do anything I use to be able to do. I don’t have life anymore.
Lots
A whole lot
Too many things
2 jobs, Fertility, too many things to list
Freedom
Freedom, ability to be carefree
Mobility
My mobility
Health
My health
Myself
My ability to walk, live a pain free life, my emotional stability, my worry free self, my joyous self, my strong self, my belief in myself.
Fatigued
I feel fatigued a lot and have to constantly manage my energy. It has impacted my social life and I can't go out the house very often.
My Chance
My entire life The chance to have a relationship The chance to have a baby And the ability to work full time
My partner
My career as a dog trainer, partners who don’t understand, and I’m pretty sure it triggered fibromyalgia I deal with
Children
My ability to have my own biological children. My spirit, friends, family, my career as a massage therapist, the list goes on
Feeling safe
fertility, a life without body pain, feeling safe in my body
Savings
My savings, good job and my ability to conceive.
My dreams
Motherhood, my career, my dreams, aspirations, my future f..
Freedom
Financial and mental freedom, friendships and youth.
Eatting
Able to work, eat normal sized meals, exercise, sleep,
Time
Time, quality of life
Family
My ability to have a family
Health
My over all health
Energy
YEARS of health and energy
Career
My military career
My youth
My youth, living my life, jobs, education, opportunities, relationships & my body
Inadequate
A sense of safety Fertility Feeling like an adequate partner Sex life
My children
Work, my ability to care for my children sex life, a lot of weight lost fertility.
Memories
My quality of life ,being a disappointment, family time and memories
Infertility
Relationships, 11 miscarriages, 12 years of infertility and time with others
Normal life
My ability to live a normal life on my own terms
Medical school
Medical school, husband, having children
Daily life
My day to day life and my sports
Pain free
My fertility My normal pain free life
Sex life
Friends, family, my sex life with my husband.
Stress
It’s very stressful feeling like this. Have to plan vacations around my period as it’s at its worst then
Success
Social life, finances, work life, energy, time, health, dreams of a future family and successful paying career
Things I loved
​It did take away a lot of my ability to do things I loved but with surgery I could do them again.
Fearful
Life, time, opportunities, graduating on time, a sense of hope, deep fear about potential i fertility
Function
My ability to work, eat, sleep, hardly functioning, missed out as a teen because of being sick
Traumatised
Housebound for ten out of my best years. Mentally I will not be the same. Too traumatized
Career
my fertility - children my career as had to give up due to health issues pleasure of sex as painful
Doing things
My body is in control all the time and I wish I could just do things like everyone else. My fertility
Mothering
My life, my ability to be the mother I used to be, my job I loved, friendships (not mad about that though)
Money
My confidence and the carefree fun person I was. Also a ton of money and loss of jobs/income.
Trust in NHS
My energy. My mental health. My trust in the NHS
So much
My youth, financial stability, friendships, so much.
My womb
The ability to have a second child My womb
Leave my bed
Ability to work and socialize and leave my bed
My body
Relationships. My body. Hope. Happiness.
My energy
My energy, my freedom, time spent with family and friends, my fertility
Time
My job, my schooling, friends & family members, time, hope
IVF
The chance to have my own birth children, wasted time and money on IVF
University
Two years of university, my mental health, having a normal life
Coping
Quality of life. Now it’s about symptom management and coping.
Life
My whole life
Socialising
Socialization
Children
Children My career
Spontaneity
My spontaneity
Lightness
Lightness
Adventure
Education. Employment. Life. Adventures.
Robbed my life
It robbed me of my quality of life.
Surviving
My life that I should be living, not surviving.
Feelings
Feel like I am hypochondriac
Health
Fertility but also my general health.
Organs
The ability to grow my family naturally, so many organs I’ve lost count, my sense of security within my body
Bowels
Being able to do higher level activities, like being out all day, or exercising comfortably, and functioning bowels/bladder.
Youth
Youthfulness! It aged me more quickly I believe due to the pain and fatigue. The migraines took days away from my life.
Life events
I lost my job, I can’t have children, I’ve missed out on weddings, birthdays, anniversaries. Slowly losing organs it’s not fair
Everything
My ability to be spontaneous. Everything has to be planned out more to help with any flare ups that may occur.
Fearing my body
Years of mobility and confidence. Eventually I started to learn to fear my own body.
Years
It's taken away 3-5 years of quality of life for me; the things I could have created in that time span.
Stability
The ability to work, a normal social life, intimacy with partner and financial stability
Kindness
The kindness of my persona I feel like because of the pain is so strong I feel like a raging bitch
Full time job
A full-time job. I have to limit my work life / Social life to survive this body of mine.
A job
Fertility. Relationship. A job.
quality of life
quality of life in every regard
Whole life
My whole life.
Dreams
My hopes and dreams
Best years
My best child-bearing years
Years
Years of good days
My zest
My fun. My zest. My energy. My sex life.
Potential
Potentially the ability to birth children.
Quality of Life
Relationships, fertility, general quality of life
Life
My LIFE, my job and future career
Independence
My career, my independence, my ability to enjoy things without pain.
Security
My ability to grow my family, my body, my mental health, and my sense of security.
Marriage
Everything I’ve lost a marriage I’ve lost a baby and I’ve lost me I don’t know who I am anymore
Present
quality of life, energy, the ability to be fully present in my life
Whole life
Everything, my whole life revolves around pain, painkillers,
Fun
Work! Relationships! Fun! Life!
Outings
Time, outings,
Children
Biological children
My Hair
my hair and confidence
Everything
Everything
Dignity
Everything. My dignity, my health, the ability to sleep, to smile, to laugh. It’s taken me!
Intimacy
Certain foods, an organ, a job, friends, the ability to be sexually intimate with my partner.
Worry
Time with family and friends. Being able to go out/on holiday without worrying about pain/flare ups. Confidence.
Inheritance
Career, family, friends, finance, inheritance for my child, time, energy, emotionally numb
My faith
My career, my confidence, my fertility, my sense of self, my faith in the medical system, nearly my life.
Bladder
My reproductive organs, my bladder function, my fertility
Sanity
Sanity, physical health, trust in my body, planning
Employment
Employment, friendships, relationships, confidence, mental health
Consistency
Consistency of what I can expect my body to be capable of.
Confidence
Socialising with friends family confidence with relationships
Life
My life
Going out
Everything. Childeren. Family events. Going out with friends. Jobs.
Missed Potential
I have been anemic most of my life so live with fatigue and brain fog .. I feel like I had so much potential that I have never been able to use due to how I feel.
Goals
It’s altered my entire life and all of my and my families goals.
bottom of page