Appointment Self-Advocacy Scripts
For Women With Suspected or Diagnosed Endometriosis or Adenomyosis
You are not difficult.
You are not dramatic.
You are allowed to ask questions about your own body.
Use these scripts word for word if you need to. That’s what they’re here for.
BEFORE YOUR APPOINTMENT
How to Set the Tone
Opening statement
“I want to be clear that my symptoms are significantly impacting my quality of life, and I’m looking for investigation, not just symptom management.”
If you feel nervous
“I find medical appointments difficult, so I’ve written some notes to help me explain this clearly.”
(Doctors respond differently when they hear impact and clarity.)
DESCRIBING YOUR PAIN (WITHOUT MINIMISING)
Instead of
“It’s painful but I cope”
Say
“This pain is not manageable, it affects my ability to work, sleep, exercise, and function day to day.”
If your pain is cyclical
“The pain worsens with my cycle, but it does not stop when my period ends.”
If pain is constant
“This pain is present most days and has been for [months/years].”
WHEN YOU SUSPECT ENDOMETRIOSIS/ ADENOMYOSIS
“I am concerned about endometriosis and would like this formally investigated, not ruled out based only on scans.”
(Important: scans often miss endometriosis.)
If they say scans are normal
“I understand scans can appear normal with endometriosis. What is the next step to properly investigate this?”
WHEN OFFERED PAINKILLERS ONLY
“I’m concerned about long-term reliance on pain medication. I’d like to discuss addressing the underlying cause of my symptoms.”
If offered NSAIDs repeatedly
“I have been using anti-inflammatories long term, and I’m worried about gut and systemic effects. What other investigations or options are available?”
REQUESTING A REFERRAL
“I would like a referral to a gynaecologist with specific experience in endometriosis.”
If they hesitate
“Can you note in my records that I requested this referral today?”
(This sentence alone often changes the response.)
WHEN YOU FEEL DISMISSED OR RUSHED
“I don’t feel my concerns have been fully addressed. Could we slow this down and revisit my symptoms?”
If they attribute symptoms to anxiety
“I understand stress can affect symptoms, but this pain exists regardless of my mental state and needs physical investigation.”
ADVOCATING FOR YOURSELF DURING SCANS
Before
“Please let me know what you’re seeing as you scan, even if it looks normal.”
If pain occurs
“That area is very painful. Please note that in my report.”
If told everything looks fine
“Can you explain what this scan can and cannot rule out regarding endometriosis?”
DISCUSSING SURGERY
“I understand surgery carries risks. Can we talk through adhesion formation, nerve involvement, and long-term outcomes?”
If surgery is presented as simple
“I want to make an informed decision. What experience do you personally have with endometriosis excision?”
BOWEL, BLADDER & ‘OUTSIDE THE UTERUS’ SYMPTOMS
“My symptoms include bowel/bladder pain and suggest possible extra-uterine involvement. What imaging or referrals address this?”
If dismissed
“These symptoms significantly worsen my pain and deserve investigation.”
ASKING FOR YOUR RECORDS
“I would like copies of my scan reports, clinic notes, and referral letters for my own records.”
(This is your right.)
CLOSING THE APPOINTMENT CLEARLY
“Can we summarise what we’ve agreed today and what the next steps are?”
If no clear plan
“I don’t feel comfortable leaving without a clear plan. What happens next?”
IF YOU NEED TO ESCALATE
“I would like a second opinion.”
OR
“I’d like this reviewed by someone with specialist experience in endometriosis.”
No apology needed.
A FINAL REMINDER
You are allowed to:
ask questions
take up time
request referrals
challenge dismissive language
You do not need to prove your pain to deserve care.
If something doesn’t feel right, keep going.