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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.
Trauma
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
Disability
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
Misunderstood
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.
Debilitating
How painful and tiring and debilitating the condition is
Invisable
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.
Real
It’s real
No cure
There is NO cure
Everything
everything
Real
It’s a real thing
Truth
THE TRUTH
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.
Empathy
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.
Scary
It hurts and it's so scary to have something you can't see tearing through your body
Suddenly
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!!!
Devastation
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
International
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
Misdiagnosed
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.
Excruciating
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.
Agonising
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.
Symptoms
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.
Broken
Pain is not normal and the word in and of itself exists. Thank you from the broken girl you’re fighting for.
Masking
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.
Hard
How hard it is in the day to day
Real
Its real
Life altering
It is life altering.
Not a period
It is not a period problem.
Debilitating
It is seriously debilitating
Not lying
We’re not making this up
Painful
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
Treatments???
There is no cure and no effective treatments yet.
Presentation
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.
Parasite
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.
Tiring
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.
Secretes
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
Incurable
It’s incurable and it’s painful. Be kind and be better.
Anyone
It can happen to anyone and it is manageable.
No cure
It’s a full body condition with no cure
Isolating
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
Incurable
It's chronic and incurable
Bad
How bad it can get
Forever
That it is chronic. It doesn’t go away.
Inclusion
Endo is not just a woman’s illness.
Fatigued
The pain and fatigue are debilitating
The affects
How it feels and how it affects everything
Decline
The mental and physical decline
Incurable
That it’s not “just a period” But a chronic incurable condition
Lonely
It’s painful (both physically and mentally), confusing and lonely
Alone
That it isolates you and makes you feel incredibly alone.
Breakable
That it's real and that it can break the strongest of women.
1-in-10
That 1 in 10 women have it so it’s more common than you think!
Life changing
That it is a life changing disease.
Legitimate
That it's a legitimate disease.
Really serious
It’s so painful and it’s really serious
Painful
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.
Attention
That it's not all about attention seeking it's actually pain
Unpredicabele
One day you can be fine and the next you could be in severe pain
Symptoms
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.
Debilitating
It’s debilitating and is more than a period disease
Always sick
It's chronic and incurable and I am always sick
Management
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
Different
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
Listen
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.
Painful
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.
Damage
It’s a systemic inflammatory disease. And inflammation can be very painful and damaging to organs and tissue over time.
Horrible
How lonely and horrible not being able to work due to pain is instead of seeing it like a vacation
Professionals
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.