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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. 


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 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. 


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. 


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.


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. 


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. 


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. 


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 


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


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. 


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.


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.


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


My life/ability to live my life normally 😞

My relationships

My job, relationships, my full mobility 


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 


Social life, chance to have children, lots of various activities that I would love to do. 


Joy. Rest. Identity—people saw me as the person who was always in pain. Ability to be a biological mom. 


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. 


A whole lot 

Too many things

2 jobs, Fertility, too many things to list


Freedom, ability to be carefree


My mobility 


My health


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. 


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  


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


My savings, good job and my ability to conceive. 

My dreams

Motherhood, my career, my dreams, aspirations, my future f..


Financial and mental freedom, friendships and youth.


Able to work, eat normal sized meals, exercise, sleep,


Time, quality of life 


My ability to have a family 


My over all health


YEARS of health and energy


My military career 

My youth

My youth, living my life, jobs, education, opportunities, relationships & my body


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. 


My quality of life ,being a disappointment, family time and memories 


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. 


It’s very stressful feeling like this. Have to plan vacations around my period as it’s at its worst then


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. 


Life, time, opportunities, graduating on time, a sense of hope, deep fear about potential i fertility


My ability to work, eat, sleep, hardly functioning, missed out as a teen because of being sick


Housebound for ten out of my best years. Mentally I will not be the same. Too traumatized


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


My life, my ability to be the mother I used to be, my job I loved, friendships (not mad about that though) 


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 


My job, my schooling, friends & family members, time, hope


The chance to have my own birth children, wasted time and money on IVF


Two years of university, my mental health, having a normal life


Quality of life. Now it’s about symptom management and coping. 


My whole life 




Children   My career 


My spontaneity 




Education. Employment. Life. Adventures.  

Robbed my life

It robbed me of my quality of life. 


My life that I should be living, not surviving.


Feel like I am hypochondriac 


Fertility but also my general health. 


The ability to grow my family naturally, so many organs I’ve lost count, my sense of security within my body


Being able to do higher level activities, like being out all day, or exercising comfortably, and functioning bowels/bladder.


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


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.


It's taken away 3-5 years of quality of life for me; the things I could have created in that time span.


The ability to work, a normal social life, intimacy with partner and financial stability


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. 


My hopes and dreams 

Best years

My best child-bearing years


Years of good days

My zest

My fun. My zest. My energy. My sex life. 


Potentially the ability to birth children. 

Quality of Life

Relationships, fertility, general quality of life


My LIFE, my job and future career 


My career, my independence, my ability to enjoy things without pain.


My ability to grow my family, my body, my mental health, and my sense of security. 


Everything I’ve lost a marriage I’ve lost a baby and I’ve lost me I don’t know who I am anymore 


quality of life, energy, the ability to be fully present in my life

Whole life

Everything, my whole life revolves around pain, painkillers,  


Work! Relationships! Fun! Life! 


Time, outings, 


Biological children 

My Hair

my hair and confidence




Everything. My dignity, my health, the ability to sleep, to smile, to laugh. It’s taken me! 


Certain foods, an organ, a job, friends, the ability to be sexually intimate with my partner.


Time with family and friends.  Being able to go out/on holiday without worrying about pain/flare ups.  Confidence.


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. 


My reproductive organs, my bladder function, my fertility


Sanity, physical health, trust in my body, planning


Employment, friendships, relationships, confidence, mental health


Consistency of what I can expect my body to be capable of.


Socialising with friends family confidence with relationships 


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.


It’s altered my entire life and all of my and my families goals. 
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