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Belly Buttons by Clare Gregory
Advice to Medics
What advice would you give medical professionals during diagnosis?
We asked 166 people diagnosed with endometriosis what advice they would give to medical professionals during their diagnosis journey / when seeking help for their undiagnosed symptoms.
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Disclaimer: All comments below are the the individual thoughts and experiences from our survey respondents
Refer to specialists
Do a hormone panel every six months. My symptoms started at 13, they put me on the pill at 16, I was diagnosed via surgery at 21, had a hysterectomy at 32, and never had a hormone panel until I was 34. That could've helped my journey so much just getting my hormones in check. Also, if you are not a specialist, refer patients to a specialist. At least give them the opportunity to have excision surgery - if they choose to stay with you as their care provider, great, but nobody ever told me there were actual specialists and a different type of surgery option.
Don't leave us to suffer
It doesn’t hurt to be assessed further when someone expresses abnormal or severe period symptoms. It’s better to rule in or out the diagnosis than to let someone suffer for a decade not knowing or understanding what was wrong. We absolutely do not operate this way for other medical conditions. No one would let someone suffer from cancer for 10 years without believing them enough to thoroughly investigate the cause.
Your words impacts us
Your words and treatment of your patients ... esp teenagers / young adults, have a life time effect.... I do not trust medical professionals and have trust issues in sexual relationships due to the amount of STI tests I was made to have / being accused of having a STI. I now panic that I will get a STI or that my partner will cheat and give me a STI, even if they have been tested.
Order Imagery
When a patient comes to you because they can’t run in sports class without getting extreme pelvic pain f**king order an MRI for ENDO. And when a patient calls you for a home visit because they’re puking their guts out from extreme pain, also order the MRI. At least that dude got me hooked on the right pain cocktail regiment. But what a moron for not flagging endometriosis
Stop traumatising
Listen to what your patients are telling you! They are experts about their body, so even if you don't fully understand what they are saying, ask questions so you can. Please do not dismiss them. This can cause great trauma and lead to altered mental states that we are already struggling with because of the pain.
Better training
There needs to be more training given to staff for a better understanding of what endometriosis is. 20 minutes in med school is not nearly enough for the hundreds of women/girls out there suffering. Rather then dismissing us, hear us, support us and try and put yourself in our shoes before sending us off with just another bad period. We just want to be heard, believed.
Stop gaslighting & listen
Just to learn to listen to their patients because sometimes their patients know exactly what they're talking about and probably no more than the doctor but since the doctor has a degree or a PhD doesn't mean that they should just Gaslight us and shut us out and not listen
Understand clinical history
Listen to your patients. Take the time to understand the clinical history that is in front of you and never, ever forget that you may have learned a lot about the condition and the human body, buy it is the life, the everyday life of your patient you are talking about.
Understand 'normal'
Please listen to the patient with chronic pain and ask the right questions- what they report as "normal" for them may not be "normal" at all as education regarding periods is so poor - this could lead to much quicker identification and management
Treat with empathy and no ego
Treat with empathy, and refer to a endo specialist team if you believe that endo could be a possibility. Treat without an ego, remember that their is limited medical research on women’s health conditions therefore your medical knowledge is based on males health and medical conditions not females. Just because a test has come back clear /N.A.D please do not yellow flag us / assume we have a mental health problem. Be careful what you say…. Implying that a teenage girl or young women is a slut or they must have an STI has a life long effect on our futures, impacting our trust with partners and the ability to have a healthy sex life.
Stay current
Stay current on endometriosis instead of using the same outdated information.
Digestive issues
When a teenager complains of digestive symptoms consider Endo
Don't assume
Don’t blame mental health or trauma for everything they are experiencing
Stop the hoops
Believe your patients, stop making them jump through so many hoops
Proper care
Give people who don’t want children to have proper medical care
You don't know
Stop thinking you know EVERYTHING. You can’t possibly know everything and you need to actually listen to your patients
No Judgement
Listen. Always ask about gynaecology and history. Avoid making judgements about women without proper investigation.
Believe
Believe their pain even if nothing shows on ultra sound / test that it still has to be coming from somewhere physically.
Read reports
Please actually read the ultrasound report from the radiologist so that your diagnosis doesn't contradict theirs
I do matter
Not to tell me I was stressed, and to not be told it didn’t matter what was wrong with me by a gynaecologist.
Entire history
Listen to the patient. Please listen to their entire medical history.
Sooner
If I had been listened to, I would have been diagnosed and treated sooner.
Ask how
Ask how the pain feels because not every pain feels as similar
Taken seriously
To be taken seriously from the start and not be told it’s just period pains.
Empathy
Listen to your patients! speak to them with empathy.
Have compassion
Stop dismissing patients symptoms and pain, listen with compassion, be open minded, leave ego at the door, be willing to learn, and refer to others if your out of your league.
I need help
Just please believe me, understand that my pain is real and if I’m asking you for pain meds, it’s because I need them.. NOT because I’m an addict.
Don't dismiss
Don’t dismiss concerns around periods, concerning levels of discomfort and pain during menstruation should be taken seriously. It isn’t normal.
We understand
Believe young girls and take their pain seriously. We understand we have to deal with periods but our entire lives should not halt due to them.
Supportive
Ways to communicate with specialists, need to be tracked in the system, id love some hope and assurance I’m not alone in this journey - but feel unsupported
Excision only
Believe us when we say we are in pain and send us to the proper excision surgeons!
Consider endo
If someone is repeatedly asking to delay a period due to pain - consider endo
Believe girls
When a young girl says her cramps are awful, believe her.
Act better
Do a better job at acting as tho you believe what we're telling you
Don't fob off
Genuinely listen to people don't gaslight or fob people off
Don't rate me
Don't rate my pain on the results of an ultrasound
Don't belittle
Listen to your patients don’t belittle them
It's not normal
It’s not “normal” to have severe menstrual pain
Research
To listen and do research. Listen to women's pain
GP Training
More training in woman's menstrual health for GPs
Be honest
If you don’t know much about the condition, be honest. Don’t try to pass off incorrect information as the truth. Also, if i say it hurts, it really hurts and i’m trying to get some help!
Educate yourself
To educate themselves on the up-to-date research on endometriosis so you aren't giving out misinformation or medications that will not help.
Experience
Listen, not lie and pretend your an Endo specialist even though your doing it just to claim the extra Medicare rebate, Definitely more training and experience needed.
MDT required
To believe my pain and to never have OBs treat a full body disease when all they look at is one small section of where Endo is or could be
Do investigations
Please do all the relevant investigations first as the delay in diagnosis has meant long term damage which I’m devastated about.
All symptoms
I don’t just have to have a painful sex life or period to be experiencing the pain that Endo causes.
Be kind
Belive girls and women when they tell you about their extream period pain, show empathy and kindness
Don't interrupt
Let me finish talking before you cut me off. I have a complex medical history and you need to know it
What's normal
To believe women when we say we are in pain and not tell them our very un normal periods are normal!!!!!
Our bodies
Listen, no one woman is the same but what we do know is our own bodies and we know when something is not right.
Not a period
Listen to your patient. Stop linking the pain to the period. It's not a period disease, it's a full body disease. Bad periods are just 1 of the many symptoms, not the entire disease.
Understanding
To be more understanding Listen to the patient first Explain things more or better I didn’t really understand endo until after my diagnosis & 3rd time admitted to hospital
Not fine
Just because you can't find it, doesn't mean it isn't there. When someone is in high pain, being told you are fine is pure gaslighting. I'm not fine and my opinion is all that should matter.
Equality
Believe women. If the pain a woman is describing would be treated immediately if described by a man, there is no reason not to treat it with the same seriousness.
Validate
Take the time to listen and believe your patients. Take the time to get educated on current information and techniques. Validate what your patient is experiencing.
Believe
Believe people
Train
Training
Kind
Be kind and listen
Listen
Listen to me
Believe
Believe the patient!
Better standards
Endometriosis needs its own speciality! Also more enducation and better ACOG standards for insurance!
Be on our side
Always believe the patient. We are not making it up. We need medical professionals on our side.
Whole picture
To look at symptoms that are being presented holistically to build a picture of what is wrong
Teaching
teaching and education on the symptoms to look out for when their is suspected endometriosis.
Be gentle
Be gentle, this is a scary journey especially at such a young age and actually listen to what we tell them
Respect us
Shut your mouth … no seriously I was treated really bad for years and lost my career in the military over this
Stop masking
Listen to the patient and find the root of the problem instead of masking symptoms.
Accuracy
Ultrasounds don’t always indicate whether someone suffers with endometriosis or not.
Listen
To all the doctors who never believed me, get another job. Listen to your patients instead of going by books.
Be open
Listen to your patients and be open to exploring new diseases you’re not educated or up to date on
Refer quicker
To not believe an ultra sound scan that sometimes they show nothing. Please refer to gyne quicker.
Don't dismis
Don’t dismiss us, especially when a 9 year old has issues and you want to give the pill, can’t be normal
Stop the pill
Listen. Put all the birth control in a locked cabinet, throw that key into a rushing river, and listen to your patients!
Pass us over
If you are not an expert recommend one its ok to pass a patient to someone that can help
Invest
Believe patients, invest in more training/education for endo & related conditions
Empathetic
Be empathetic not everyone’s experience of endometriosis is the same
Not a number
treat people as living beings not as numbers or time at your disposal during visits.
Listen more
Listen much more closely to your patients- especially the female ones.
Not reproductive
One size doesn’t fit all, and it’s not a reproductive condition it’s full body
Stay up to date
Please seek continuing education to stay up to date in your field.
Holistic options
Be informative about holistic options
Listen
listen to us. we know our bodies best.
Run test
Just listen and run the tests.
Believe
Believe what the patient is telling you
Don't invalidate
To not dismiss or invalidate a child's pain
Run tests
Believe women/girls and run tests/scans/etc
We know
Listen to your patients. They know their body.
Young patients
Recognise the symptoms in younger people
Actually listen
Actually listen to us! Believe us
Refer to surgeon
Refer to surgery do not start treatment
Specialist refer
Please refer out if you are not considered an expert in endometriosis.
Stop gaslighting
I know my body so please stop gaslighting me and please listen to me
Treat pain
Listen to women and treat pain seriously, even if woman is young
Pain isn't normal
Pain that is so bad that it makes you pass out isn't normal.
Ask questions
Include menstrual health/pain in assessment. Ask questions
Reliability
Listen to your patients. They are the most reliable narrators of their own experience.
Recognise
Endo is a full body disease and needs to be recognized as such. Pain is not normal
Listen
Listen to patient as each one has different symptoms and pain
Early treatment
Listen and push for Endometriosis research of early diagnosis and a treatment!
Find reasons
To listen and believe women and their symptoms. To investigate sooner if there's a reason
Educate yourself
Educate yourself! The pill is not for everyone. Young girls can have endometriosis too!
No scripts
Just taking time to listen no writing a script and saying "I don't know what to do with you"
Don't be ageist
Don't discriminate against someone's age. Believe someone when they say they are in pain.
Regard endo
Listening to the patients and updating their knowledge regarding the disease .
Don'tassume
Listen and learn. Under go further training. Don't gas light and assume its something else
Pay attention
Pay attention to our concerns! If you’re unfamiliar with treating Endo, refer Endo sufferers to specialists. Be proactive in assisting and identifying Endo symptoms. Educate patients to reduce the need for online research.
Rule out endo
Listen, talk about what's considered a heavy period, look for signs of the common disease, endometriosis. And recognize the whole body disease as it is, do not dismiss extra pelvic symptoms in an endometriosis patient, rule out endometriosis.
Be curious
To be open and curious. If you do not have the answers be honest and make some effort to find out. Particularly to men, do not believe that women having periods just have to experience pain. We all deserve to live pain free.
Research
Researching why Wobenzyme N has helped my endo and other peoples I have suggested it to. It’s an enzyme for joint health but eliminated my pain and symptoms! Why does it do that and how do we get it to more endo sufferers?
Look into cause
That an antidepressant is not a cure, please listen to your patient and if they are seeing a counselor, working out, eating right and still struggling with physical symptoms look deeper into the cause instead of just mental.
The Entirety
Actually learn about endometriosis in its entirety before treating patients. Stop telling us to get pregnant and have a hysterectomy, it’s disgusting.
We are truthful
Please stop thinking we are lying, that it’s all just an overreaction. That the pain can’t be that bad if we can talk or smile or hold a conversation or struggle through work and/or raising children
Advise us
Listen to patients and advise them on the basis of belief. Understand that the patient does not know what is going on. Look at all of the symptoms in the round. Ask questions to draw out symptoms that the patient may have normalised.
See specialists
Endometriosis specialists do exist. So may obgyns never recommended I see a specialist and believe patients are not med seeking consult and advocate if you do not know
Not hysterical
Listen to patients, they’re living with the condition and thus have first hand experience and stop treating us like we’re hysterical or mentally unstable when we ask for help.
Don't dismiss
Just listen properly. And don’t dismiss anything. We’re not exaggerating, we’re just in pain
Further tests
believe in the patient, and refer the patient to a specialist for further tests if you are unsure
Check & discuss
If you aren’t sure check and discuss with someone who knows instead of being dismissive
Stop telling
Stop telling women to have a hysterectomy as a cure and that it is hormonal- its only one piece of the puzzle!
Look inside
You cannot tell if someone has it UNLESS they look inside via laparoscopy or MRI.
Understand
We know our own body. Don’t make someone feel less then because you don’t understand what’s going on. We don’t wanna be in this pain because it’s fun or gets us attention. We are screaming for someone to just listen and help us.
On your radar
Our disease is so common. 1 in 10 so this disease should always be on the radar of the health care professional when symptoms present that are not showing up on bloodwork and routine testing / invisible to the naked eye.
Recognise endo
Set aside one weekend to do a deep dive on up-to-date endometriosis literature. Ignore what you learned about it in medical school. You just need to know how to recognize it and when to refer patients to proper specialists.
Negligent
Stop dismissing patients if something is wrong, please investigate it and keep investigating it until you find an answer. Stop throwing us under the bus because you are too lazy or negligent and or jaded to actually do something about it.
Not exaggerating
Listen to women and girls when they complain of intense pain, it’s not normal and they’re not exaggerating! Read up on endometriosis and look for symptoms in girls who talk about painful and heavy p.
Believe
Believe women
Understand
Be more understanding
Believe
Listen and believe.
Diagnosis ASAP
Earlier diagnosis
Listen
Listen to your patient
Stop myths
Believe women, and stop selling them vindictive myths about female health!
What we say
When a young girl says her cramps are awful, believe her.
Not too young
Listen to us. We know our bodies. Don't tell me I am too young
We're not crazy
Listen and believe that we know our bodies. I’m not crazy.
Research
To listen and do research. Listen to women's pain
Conferences
To attend medical conferences related to Endometriosis.
Believe
Listen and believe in patient's pain
Options
Laser isn’t the only option for the treatment of endo
Sympathy
Sympathy. Not acting as though it’s all in my head.
Different
I wish I wasn't told different things by different doctors
Learn
Learn the latest research on endometriosis
Recent reserach
READ THE MOST UP TO DATE RESEARCH
Actively listen
Actively Listen. Educate yourself. Be kind.
Sympathy
Use sympathy we are not over exaggerating
Respect
listen and hear and respect and discuss
Listen
Listen to the patients
Don't ignore
do not ignore patients
Take the initiative to educate themselves
Care
Listen to women and care
We need you
don’t dismiss us when we are in need
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