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Belly Buttons By Clare Gregory

What everyone should know

What should everyone know about endometriosis? 

We asked 166 people diagnosed with endometriosis what they wished everyone knew about endometriosis.

Disclaimer: The following comments are the individual thoughts and opinions from 166 survey participants who have endometriosis.

The seriousness's of it

The seriousness of it. When I was first referred to gynae I never even realised how bad it could be. The people in my life, bless, try their best but I just don’t feel connected to anyone about it. It’s such an isolating thing to go through and there is no way out, and I’m constantly worrying about the progression and what that means for my future. 

Constant grief

For some of us, it is in the top 20 most painful diseases list. It’s not just period pain. It puts many of us in a constant state of grief. It impacts about 1/7 of females, but all sexes and genders. There is more misinformation floating around than accurate info, so stay open minded and willing to learn and listen. It impacts each of us differently. Stage doesn’t impact the pain a patient is suffering.

We need support

It isn’t a bad period, it’s not just a little cramp here and there, endometriosis is a life long condition that is debilitating. We don’t need people telling us we are exaggerating we need support, to be listened to, believed. Think before you speak, you don’t know what someone may be going through, especially when it comes to children. 

Whole body disease

That it’s a whole body disease and not just bad periods. It’s something which greatly impacts the lives of those who have it and most of us suffer in silence due to the amount of gaslighting and medical trauma we have received not just on our journey to get a diagnosis but even after the fact as well. Just because someone doesn’t look like they’re suffering doesn’t mean they’re not. Endo warriors are some of the bravest and strongest people I know. If it weren’t for them I wouldn’t have fought so hard for my own diagnosis. So when someone says they have endo, don’t dismiss them - listen to them because they often know more about the disease than a lot of the medical professionals out there. 

Multiple surgeries 

Hysterectomies do not cure it. It's not going to be one surgery and you're done. Yes, excisions work better, but those aren't one and done either. It's never-ending, and you're probably going to have to fight your way through most days, but you will learn to live with it. Most of the time, we are in pain, we are fighting through it to enjoy a small amount of normal life, so just because we are fighting to have a good day, does not mean we are cured. We will very likely be paying for it with increased pain tomorrow. 

Medical fields is archaic

That the entire medical field is archaic in their approach to how they treat us. I wish everyone understood this disease as well as cancer - that people were told about this as they hit puberty. I dream of stupid infomercials being on TV about Endo. I dream about insurance recognizing and covering it. I dream about Drs being trained it. I dream about a center we could go to without traveling that looks at all of your body’s and emotional needs in one place. Awareness HAS to happen NOW!! I have two daughters and I won’t shut up until things change. I still grieve the loss of my uterus and how much of my life over 30 years was lost.

Talk about periods

The pain is real. And I wish people would talk about periods more in general. Until just before my diagnosis I thought that the heavy bleeding and massive clots were “normal”. It wasn’t until I showed my nursing friend that she was like no that’s not normal you need to seek help. Then I knew it wasn’t normal. 

Hysterectomy is not a cure

 - this is a FULL BODY disease. I had a hysterectomy nearly 5 years ago and I still get flares, there is still endo in my body and it still grows, and I still have to deal with endo daily despite not having any female reproductive organs. 

Needs to be taught in school

More about it - about the signs, symptoms and potential impact versus "normal" periods. This also needs to be taught in schools,  so that future generations have greater awareness and empathy, to break the signals and that girls will feel reassured to fight for support if they experience symptoms.

Whole life impact

It impacts your whole life!  Relationships   Plans / Days out  Work / Employment / Studies   Mental Health   Physical health   Well-being    Finical stability   Sex life / Intimacy   Future plans   Dreams   Holidays   Travel (try driving on the motorway, when you all of a sudden you get a flare up hours from home.)  Family / family plans 

Chronic inflammation

That it is not just the endometrium gone rough, but a serious painful, invalidating, chronic, inflammatory, until now uncurable common disease. And therefore, we deserve better care, we need more awareness and investigation, and we can have more and better prepared specialists to come up with better and more humane treatments and soon maybe even the cure for it.  

Dynamic disability education

I wish people had a better understanding of dynamic disability, in general. That someone can be fine one day and totally debilitated the next. And I really wish endometriosis medical research funding matched other conditions with similar occurrence rates like diabetes. 

Health inequalities

It’s a horrendous condition that is incredibly painful and robs you of the chance to have children . Health inequalities for women means this condition has received very little attention or research funding. 

You feel you're dying

That it is very painful so much you think you are dying. To validate that pain and not gaslight you.  To understand that one day you can be fine but the next awful. Not to judge someone based on this.   That despite the pain some of us just battle on through and do fun things regardless it does not mean the pain is any less it just means that we’ve learnt to live with it. 

It's terrifying

When you don’t know what’s happening to your body, it’s terrifying. More information taught generally could ease this feeling - the first time it happened, I felt like I was giving birth for hours (I wasn’t). The pain is horrendous. 

Constant pain

That it isn't just a bad period and it's not just caused by a hormone imbalance that is not just bloating but being in constant pain this doesn't go for everybody with endometriosis but it's what I go through

Destroys quality of life

Is a serious debilitating condition for those symptomatic with pain that it destroys the quality of life and time of the patient.  They need to be believed when it's not just a simple dysmenorrhoea. 


How painful it is and what we are living with daily. I wish it were acknowledged as a disability without having to prove it. The weight of the trauma of living with it in silence for years because we aren’t heard or taken seriously.

Isolating and diminished trust in the medical system 

It’s not rare. It’s not just a women disease. Everyone is completely different from symptoms to how they handle the disease themselfs. It’s isolating you feel like it takes what made you the person you were. I dont think anyone could understand the pain that has become such a normal thing for us. Stop telling us it’s all in our head or treating family less then. Rally around them don’t make them hide what’s actually going on because they can’t trust you just like they can’t trust their own medical system. We need a place to feel safe and not judged especially if we have yet to get the diagnosis.

Daily struggle

It’s so much more than bad periods. It’s a daily struggle for most 


It is truly a disability, it's so so so much more than a painful period.

The impact

It’s more than a bad period and it affects everyone differently 


It’s a whole body disease and it’s incredibly misunderstood. 

It's real

That it's REAL & so much more than just a bad period 

Grows back

It can grow back anytime and anywhere. It’s like a cancer. 


How painful and tiring and debilitating the condition is


just because you can't see it doesn't mean it doesn't hurt 

It's painful

It’s real  It’s painful   Your not being lazy you are just unwell 

Not a period

That it’s a full body inflammatory disease not just a bad period. 


It’s real

No cure

There is NO cure




It’s a real thing 



Daily challenges 

How hard it is to live in pain every single day, and even if people don't "look sick" it doesn't mean they aren't.


That it’s real and a friend cancelling plans or colleague calling in sick isn’t swinging the lead!

Not reproductive

That is a whole-body disease - We need to stop associating it with only reproductive issues. 


It hurts and it's so scary to have something you can't see tearing through your body 


The pain or flare up can come on very sudden and you have no way of knowing how your day will be

Lacking experts

It's a full body condition. Consult an excision specialist and avoid wasting time with regular OBGYNs lacking expertise.  Despite the challenging fight, you can persevere—keep pushing forward.

It sucks

This sucks. It really does. But there is a whole community who understands you, loves you, and is here to fight with you!!! You are seen. You are heard. You are safe. YOU ARE LOVED!!!


It's so much more than just a bad period or reproductive disease it's a full body disease negatively impacting your life in every aspect with devastation , ambiguous loss & disenfranchised grief 


That it’s wayyyyyyy more common- at least if not more than 1 in every women (and even some men!)- and needs desperately to become an international research priority. 

Living with it

It's not just painful periods, a pregnancy won't cure us, birth control won't cure it and a hysterectomy won't cure it...there is no cure for it and it's hard to learn to live with

Similar to cancer

It’s very very similar to cancer and it IS deadly. Hundreds of people die because of endometriosis every single year. Yet for some reason it’s seen as a non fatal disease 


that it is very common and undiagnosed and misdiagnosed. That most doctor's don't know how to properly treat it. You often have to know more than providers about your condition. 


How excruciating the pain is. Because it's invisible doesn't mean it doesn't exist. So many people have blamed me for faking being ill for cancelling plans or having to leave early etc.


It is real and the effects are hugely impactful on everyday life. The pain is agonising. It does not surprise me that some equate it to labour pains - that is how painful and debilitating it is.


It can be extremely painful and can cause extreme symptoms and mental health issues. It's not just a bad period but a whole body disease. And it is currently not curable. 


Pain is not normal and the word in and of itself exists.      Thank you from the broken girl you’re fighting for. 


It has ups and down and I’m good at hiding it. Just because I’m not crying in pain doesn’t mean the pain isn’t that bad

Big deal

It is very serious, very painful, decreases the quality of life, and is a bigger deal than what is portrayed.

Whole body

That is a whole body disease, not just gynecological, despite most people having to see them for treatment. 

In pain

Just because someone acts “normal” doesn’t mean that they aren’t in pain. Believe us when we speak. 


How hard it is in the day to day 


Its real

Life altering

It is life altering. 

Not a period

It is not a period problem. 


It is seriously debilitating

Not lying

We’re not making this up


How painful it is! 

Everywhere pain

It is painful everywhere 

Not a period

It’s Not Just A Bad Period 🩸 

Not period pain

It is not just period pain. 

Life limiting

It is agonising- it’s not just period pains. It’s horrendous and unbearable and life limiting. 

All organs

Endometriosis  has not been found on every single organ in the body. Read that again.

Not alone

That there are other people who have this, your not alone. 

More common

That 1 in 10 women have it so it’s more common than you think! 

Takes everything

It takes everything as way from you and it won't stop at nothing 💔

Symptoms 24/7

We don't just have symptoms during our period. 

Full time illness

It’s not just a heavy period. It’s a full time, whole body disease 


There is no cure and no effective treatments yet. 


It presents many different ways 

Not the womb

Endometriosis is not the endometrium. 

Be informed

What endometriosis actually is, I wish I was more informed before I had my first surgery and could have avoided trusting someone who wasn’t to be trusted. 


It feels like a parasite, infesting my body, spreading undetected by any medical equipment, making my body it’s home. Because of it, i’m dying. 

Not your fault

It is not caused by any form of bacterial or infectious disease. It is not the sufferer's fault. It hurts like hell and so many people are silent about it. 

Daily illness

Just because I look fine on the outside does not mean I am fine and even though I feel better since my surgery, it does not mean I feel well on a daily basis.


That it’s a whole body disease I’m sick and tired of hearing people saying “oh it’s just a bad. Period” at least it’s not cancer. Well, it sure acts like it. 

Rules schedules

It’s extremely common, and doesn’t affect everyone the same way. It can trigger the onset of a shit ton of other chronic illnesses. It can completely rule someone’s schedule.

Need rest

The level of pain being so severe and how often it occurs. That symptoms can vary day to day. That we are not lazy when we need to rest.


It’s a debilitating chronic illness that most people won’t tell you they have because they don’t want you to know just how much pain they are really in.

Soul destroying

It's a lot more serious than doctors make out. It is absolutely soul destroying but you can meet amazing people through your journey. 

Need knowledge

It is not just a period disease, it’s more common than you think and the more we know the more we can support one another 

Chronic illness

It’s not just heavy periods   It’s a chronic illness  


It’s incurable and it’s painful. Be kind and be better. 


It can happen to anyone and it is manageable. 

No cure

It’s a full body condition with no cure 


How much is isolates the person experiencing it. 

More than period

Its not just painful periods.

Not periods

That it isn't just about periods

Pain levels

the level of pain I deal with


It's chronic and incurable 


How bad it can get 


That it is chronic. It doesn’t go away. 


Endo is not just a woman’s illness. 


The pain and fatigue are debilitating 

The affects

How it feels and how it affects everything 


The mental and physical decline 


That it’s not “just a period”  But a chronic incurable condition  


It’s painful (both physically and mentally), confusing and lonely 


That it isolates you and makes you feel incredibly alone.


That it's real and that it can break the strongest of women.


That 1 in 10 women have it so it’s more common than you think! 

Life changing

That it is a life changing disease. 


That it's a legitimate disease.

Really serious

It’s so painful and it’s really serious 


It’s a very painful condition! 

Not just

It's not "just a bad period"

Life impact

How hard it is, how scary it is, what a massive impact it has on your life.

Whole body

It is not just pelvic pain. It can affect so many parts of your body. 


That it's not all about attention seeking it's actually pain


One day you can be fine and the next you could be in severe pain


It has so many different symptoms. No 2 people are the same w/ endo

More than

It’s not just a bad period it’s more than that.


It’s debilitating and is more than a period disease

Always sick

It's chronic and incurable and I am always sick


pain can be relived with the correct treatment

Much more

That it’s not just a heavy period, it’s so much more 

The know

That it’s so common and not many know they have it


That everyone’s is different it isn’t all the same. 

Impact life

How hard it can impact us and our daily lives.

Isn't easy

It is a chronic disease and life isn't easy with it 

Won't get better

It doesn't have a cure, I won't get better 


that so many women suffer     and must be listened to    and there needs to be much more research into treatments

Finding a doctor

That it is a chronic disease with no real way to find a doctor to trust near where you live. 


That it's painful!  Many go through it, but not everyone who has hard periods, has endo. 

Impact of fatigue

How the fatigue impacts you and how different the pain can be. It impacts every aspect of your life.


It’s a systemic inflammatory disease. And inflammation can be very painful and damaging to organs and tissue over time.


How lonely and horrible not being able to work due to pain is instead of seeing it like a vacation 


Endometriosis can be better managed when you work with a team of professionals and that you can live better with it.

Crippling pain

This is a full body condition with crippling pain and fatigue. It’s feels it’s just an existence not a life 

We deserve ...

That at its worse, it is entirely debilitating in literally every sense and we deserve more support. 

Whole body

That it is a whole body disease and not a bad period! It is so much more than that

It's there

How debilitating it can be and just because you can't see it, doesn't mean it isn't there

Takes from you

How painful it is. Emotionally and physically. How much it takes from you. 

Severity of pain

The severity of the pain and the variety of presenting symptoms. 


How painful it is. Sometimes I feel your being judged or exaggerated. 

Can comprehend

It’s more painful than you can comprehend if you don’t have it. 

It is not caused..

Endometriosis is NOT caused by retrograde menstruation!


how devastating and debilitating it is 

Doesn't mean ... 

I doesn’t just mean heavy periods 


That it’s not just period pain. That my fatigue is crippling 

More than 

That it is not just cramps and it affects the entire body.

Effects organs

That it effects your whole body , any organ and every aspect of your life .


How awful it really is and how you are expected to just keep going.

Impacts life

It's a whole body disease that impacts daily life for many patients.


Endometriosis can take away so much from women due to the pain

Never get rid

This is a whole body disease, like a benign cancer you never get ridd of. 

Mental impact

How much it can effect someone mentally not just physically. 1

What is is

What it was and have more research so therapies and treatment would be commonplace and covered 

Dire health

It is a dire health condition that requires immediate attention, research efforts and funding efforts to be applied to asap!

Pain is real

That the pain is real. I wish you could touch them just so they could feel it for just a minute. 

Taken seriously

That it is a chronic disease that needs to be taken seriously 

Few options

Just how little is known about it and how much research would help. There’s so few options out there for treatment etc and yet so many people suffer from it


This is takes so much out of me, not just physically, but emotionally and mentally. I have to think about this every single fucking day. It’s exhausting.
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