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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. 
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