Belly Buttons by Clare Gregory
The doctor said....
What has been the worse thing a health care professional said to you?
We asked 166 people diagnosed with endometriosis what the worst thing they were told when seeking medical help for their endometriosis symptoms or when attending a consultation / getting treatment by their health care professional for endometriosis.
Come back for a baby
We don’t do surgery anymore. It’s not the gold standard for Endometriosis. if you have endometriosis you just deal with it. Come back when you wanna get pregnant
Women's health
I was told that we don't know much about women's health, so there's not a lot they can do for me other than just put me on the pill. I was given very little hope for a life without pain and suffering.
Don't be so stupid
I was hysterical and crying in which I told my GP I can’t cope with my periods anymore, and I want them gone. In which her reply was “don’t be so stupid, you need your reproductive organs for more than just a baby”
No partner no concern
Well at your age the only REAL symptom we’re worried about with potential endometriosis is infertility, and you don’t even have a partner, so I don’t see why you’re so concerned.
Karma
That my pain was probably karma caused by doing bad things in a past life. Second worst was try eating some yogurt and see if that helps
Don't have sex
I was 16 and the pain during sex with my first boyfriend was so bad I was passing out and my gynaecologist told me that I was just too young to have sex.
Making it up
I think you're making it up.
It is so
It is what it is.
Get use to it
Pain is normal for women, you will get used to it
Be happy
Be happy it is not cancer, you can't die from endometriosis
Eye rolling
I think the eye rolling was worse than any off handed comment
Exaggerating
Well it couldn't be THAT bad, you must be exaggerating a little!!
Black listed
You are a hypochondriac and I will black list you at this hospital.
Threw
He threw, THREW my pain journal across the room. Don’t worry, I rate him every year
It's mental
Sometimes women feel physical pain that is really mental you should take prozac
In my head
That it was all in my head and that I needed to see the Mental Health Team.
In your head
get pregnant or that it was all in my head
Calm down
Nothing is wrong with you, you just need to calm down
What you want
Well what do you want ME to do about it
Only
Symptoms ONLY happen during period
SEP
"this isn't a gynacological problem"
Hysterectomy
Just get a hysterectomy
suppose to hurt
it's just a period it's suppose to hurt
Endo isn't bad
Your endo isn't even that bad
More sex
more sex will make the pain go away
Anxiety
it's just anxiety
Nothing
There’s nothing wrong
Too young
You are too young for that.
Drug seeker
You’re a drug seeker.
Somatic
That it was somatic disorder
You're ok
You are making it .You are ok.
Contraception
"You don't want to take contraception, so there is nothing I can do for you" Said whilst looking away from me with a shrug.
Tampons cause it
I got endometriosis because I use tampons even though I had endo for five years before I ever used tampons.
Appendix
Was told my pain would go away when it led to emergency surgery and 2nd surgery finding Endo on my appendix.
HA!
“I could spend 10 hours in there removing endo, ha!” After I asked if he excised endo and if not if he would next time.
Phantom pain
What exactly do you want from me ? Has anyone discussed phantom limb with you ! You know that hysto cures endo right ?
Manifest pain
"Often times our trauma will manifest somewhere in our bodies as a physical pain. I think you should seek counselling to help you through this" She then contacted my general doctor without my permission...
Story time
He told me a story about a woman who let endometriosis break her then claimed it was to help me but it was not helpful and made me feel rubbish. I was told having a baby would solve my problems
Just fat
I had a former gynaecologist who performed my first laparoscopic procedure and diagnosed me with endometriosis tell me I didn’t have endometriosis, I was just fat, and if I lost the weight, I’d be fine.
Lose weight
I once complained about the pain that goes down my legs. It feels like it comes from my pelvic area and just shoots down my legs, crushing my thigh bones.. I was told I need to lose some weight to get rid of the leg pain. I was 140 lbs at the time.
Couldn't have
I couldn’t have obstruction in rectum over years because I have made it so far. Never mind narrow stool, near faints and hours at toilet for years. The doc had no intention to examine me or to help me in other ways
You go
I'm not here to give you a science lesson, you go and fly around the world for a second opinion then come back to me
STI
Have you got an Sti or std been as you’re pains are worse been with partner for 12 years.
you're not dying
These drugs are not discharged with patients unless they are dying and you are not dying
Be glad
Some people are glad to have pain during ovulation so they know when to get pregnant
Suicide
I tried to commit suicide on Orlissa and he told me it's not that bad and to suck it up.
Unlucky
Periods are supposed to be painful. You’re just one of the unlucky ones. Everyone else just gets on with it so it can’t be that bad
Too young
You’re too young to be in this much pain or this sick. Beyond that, I don’t remember because it was traumatizing and I’ve blocked a lot out.
Oh, you're in pain
While doubled over in her office in pain a Dr looked at me and just said "oh, you're in pain" and ended the appointment without helping
I'm a surgeon
There’s nothing I can do for you & I can’t find anything wrong. Do you know who I am, I’m a surgeon & I open people up. Is that what you want?
Laughed
Laughed at me, and told me “I hope you didn’t PAY for this!” in reference to private bloodwork I had done to gain insight on my fertility.
Wasting my time
You are wasting my time, NHS resources, public money and taking surgery away from someone that actually needs it when there is nothing wrong with you
Exaggerating
Stop exaggerating your pain is just from your period we all have the pain go on birth control take panadol and neurofin and you’ll be fine” said from a female doctor
It's normal
That what I was going thru was normal for some woman. That I mush not want to get healthy if I’m still having symptoms after their recommendations
Denied
That they were going to call my insurance company to flag me anytime I got into a hospital or ask for pain relief to immediately be psych evaluated and deny pain management
Call a therapist
Telling me to call a therapist. Basically telling me that it's all in my head even though I was continuously having miscarriages. Also being flagged as a pill seeker early on.
Why you ask
I don't know why I asked that you can't get pregnant. I don't know why you ask that question
Diet to health
I was told I could diet myself to good health. Pregnancy has been suggested as a treatment option.
Don't complain
It’s a normal part of having a uterus and to just get used to it, other women don’t complain when they cramp
Not believed
Just not believed my symptoms were physical and attributed them to emotional….like anxiety
Fight through it
That my excruciating pain each month was normal and I just had to fight through it.
You can't be
You can’t be in pain everyday with it, it’s only monthly with your cycle
Deal with it
It could be worse, and you need to just learn how to deal with the pain
Back to normal
Get pregnant and my life would be better and back to normal.
Get pregnant
Get pregnant and come back in over half a year if you still hurt (I was 18)
Why come to ER
"Why did you have to come to the ER to be told to take Tylenol?"
You're lying
“You’re lying about your pain” and “I don’t know what you expect me to do for you”
Deal with it
“Periods are part of being a woman, you just need to learn to deal with it” (by a woman)
Nothing can do
Even if you do have endometriosis there's nothing the NHS can do to help you
Seeking attention
Think there must be stuff going on at home to get you into this state , seeking attention
Cramps are bad
Sometimes cramps are bad, no I won’t prescribe Motrin (before it was over the counter)
You're breathing
The A&E doctor said "you don't have endo on your lung or diaphragm, if you did you would have a Pneumothorax, which you don't, you're breathing aren't you?? you just pulled muscle" I left still in agony, worried about my symptoms, with no help
They don't help
It’s an inflammatory condition so anti-inflammatories will help” after I repeatedly told him they don’t help me and I wanted a script for actual painkillers
You want surgery
When I told my gynaecologist I wanted to get off birth control despite painful periods and she scoffed at me and said "What, you want surgery?" before promptly walking out of the room.
Wait your turn
I am not operating on you, you are not an emergency, you won’t die just need to wait your turn & by asking for this surgery you are taking a dying persons place, how can you live with that
Your normalcy
You have to learn to live with the pain, for you this is your normalcy. Control your urge to ask for help, after all it is a condition you potentially created for yourself.
Soo
So you was sick.. now your not... Why are you here?
Walk like endo
You walk and talk like an endo-patient.
Imagine
Imagine the pain
sick people
I am actually busy treating sick people
Womb out
just have your womb out, then your pain will go away
Delusional
That I am delusional and there is clearly nothing wrong with me I just want attention.
Dismissed
Dismissed - That’s it’s just normal period pains
Wear thick pads
there are more sick people out there just wear thicker pads, you’re fine.
Cut carbs
I need to lose weight, Cutting out carbs would solve my issues.
Have anther
I should have another child (having never had one before).
In your mind
“Are you sure these symptom’s are real and not just in your mind.
Can't be in pain
You cannot be in that much pain. You are drug seeking.
It's only monthly
You can’t be in pain everyday with it, it’s only monthly with your cycle
Too random
I’m too young and my pain started too randomly for it to be endo
Just relax
‘This is all just in your head- just relax and you’ll be fine.’
You're sore
"You're sore, even there?" (and rolled her eyes).
Infertile
That I possibly could be infertile
Just a period
It’s just a bad period it’s normal
Get pregnant
Get pregnant, then proceeding to have issues
I wont see you
i won’t see you again after the surgery
Strange girl!
"'this strange girl' returned once more having had a recurrence of her pelvic pain getting very concerned about problem" at the time i was hardly a girl i was 30 years old
Tummy ache
'You're a woman its normal' 'you just swallow too much air' 'Everyone gets tummy ache' 'Just accept it and stop looking for an answer'
It won't hurt
this pelvic exam won't hurt. We have 7 year olds who have never had sex before and they don't think it hurts
Just a period
A period is just a period It’s all in my head There is nothing wrong with me it’s just a bad period Have a baby and it will help get rid of the endometriosis
Go back to work
I don't see anything that would be causing this pain. You are fine. There is nothing wrong so I'll write you a note and you can go back to work.
Back to school
your pain is normal, take a couple of paracetamol and get on the bus back to school
Just a period
There is nothing I can do for you. You either have to deal with the pain or get your uterus removed.
Insignificant
You have a tiny cyst that is clinically insignificant, you are making up this pain because you know you have a cyst.
Unstable
He said I have low pain threshold and I am seeking attention because I am mentally unstable.
Too old
You are too old and too advanced with endometriosis to get pregnant. No follow up or support offered as a consequence.
No surgery
We don't do surgery anymore
Overweight
It’s because you’re overweight!
Well
Well you weren’t making that up
No return
endometriosis doesn't come back
Normal
Painful periods are normal
Womb away
just have your womb out, then your pain will go away
23
I couldn’t get pregnant at 23 years old
Constipated
It's just constipation
Past Trauma
Your anxious and depressed due to your past trauma.
Get use to it
It only your period get use to it
Weakling
What a weakling you are!
Just IBS
its just IBS you need to lose weight
Baack to work
Take your ibuprofen and get back to work!
Normal
it’s normal to have these symptoms
Don't worry
‘ don’t worry. It’s not life threatening’
Anxiety
It’s just anxiety/it’s normal for women your age
Stop
Women have endured this for thousands of years, stop complaining.
Suffer
There's nothing else I can do, you just have to suffer through it.
Not that bad
How bad can your pain be if you haven’t been to A&E?
Wasting a bed
An ER doc told me I was wasting a bed for someone who needed it.
Truth
You are telling your body to feel these symptoms I'm worried for your mental state,
Low pain
I think you have just a low pain tolerance and you should just try losing some weight
Prob not
you probably don't have endometriosis because the depo provera injection has stopped your periods
Endo is hard
what do you want ME to do? Endo is hard to treat.
Painkillers
"It's just period pains, just take some painkillers".
Looking for pain meds
I had a really traumatic surgery to remove my endometriosis. It had been a few years after and once again I was out looking for a ob to listen to be. I ha d a doctor look at me and say of you looking for pain meds I don’t just hand them out. I was so angry because if she would have read my chart she would have seen I was on pain medication instead she made me feel like a drug addict all I wanted was some relief again.
Saved your life
Day 20 of heavy bleeding, passing massive clots. I went to the ER . I refused the pain meds and the ER doctor said "if you don’t want me to treat your pain then I can’t do anything for you". The next day i went to a different ER & began to haemorrhage and had a haemoglobin of 8. The ER doctor said thank god you came in, I just saved your life.
Pill only
I needed a "refill" on my pelvic floor PT appointments, so I went to the practice and met with a new nurse. She immediately tried to prescribe me birth control pills and when I said no looked very offended. She would not sign off on my PT refill until I started crying. I have not been back to that practice since.
Belly Rub
I was told to see a therapist by my WOMAN GP. She said my pains were more in my head than anything and she rubbed her belly and said Endo only affects you here and not anywhere else in the body.
Surprise
“We got a bit of a surprise when we opened you up!” My endometriosis was discovered during a laparoscopy for fibroids. He then left without really explaining what endometriosis was. I was lucky a nurse present also had it and could explain further.
Discharged
An ER doctor told me to stop overreacting when I cried after he told me nothing was wrong with me and they were about to discharge me. The emotional and physical pain I was in during that moment was more than words can describe.