Living with Endometriosis and pelvic pain in Australia - a snapshot

About the Survey

We need your input! We’ve heard from many people who are struggling with affordable access to treatments and management options to help to improve the symptoms of endometriosis and pelvic pain.

We are conducting a survey to better understand the experiences and challenges faced by those living with endometriosis and pelvic pain. Your participation will provide critical insights that can help shape future treatments and support systems.

By completing this survey, you will:

Contribute to Research: Your responses will help researchers and healthcare providers develop more effective treatments and support.
Raise Awareness: Sharing your experiences can highlight the widespread impact of endometriosis and pelvic pain, fostering greater awareness and understanding.
Influence Policy: Your input could potentially influence healthcare policies and the availability of targeted treatments through programs like medicare or the Pharmaceutical Benefits Scheme

The survey is straightforward and will take only a few minutes of your time. It includes questions about your living situation, health status, and experiences with endometriosis and pelvic pain. Your responses are completely confidential.

What will we do with the information?

QENDO will produce a de-identifiable public report, available on our website based on the survey responses. If you would like to receive a copy of the outcomes of this report in the coming weeks, please include your email at question 15. By completing this survey you are providing consent for what you share with us, to be included in the report and used for other related awareness or informing activities as well as your responses will make up the public report. This will look something like "X% of survey respondent had been diagnosed with endometriosis via laparoscopic surgery", "X% of survey respondents reported X had helped their symptoms of endometriosis and pelvic pain", "X% of survey respondents reported they used X to medically manage their symptoms of endometriosis and pelvic pain".

This survey is not affiliated with a university or research program and therefore does not have ethics approval. The aim of the survey is as an organisation, to understand the current snapshot of Endometriosis and pelvic pain in Australia and help inform our next steps.

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* 1. What state do you live in?

QLD

NSW

VIC

TAS

ACT

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* 2. Do you identify with any of the following?

Live in a regional or rural area?

Identify as an aboriginal person?

Identify a a culturally diverse or represent a culturally diverse group?

Live with a disability?

Live in a metro area?

Identify as female?

Identify as lesbian, gay, bisexual, transgender, intersex, queer/questioning, asexual?

Parent of someone with endometriosis or pelvic pain

Partner of someone with endometriosis or pelvic pain

Relative of someone living with endometriosis or pelvic pain

Other (please specify)

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* 3. How old are you?

13 and under

14-17

18-30

31-50

51 or over

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* 4. Do you have a diagnosis of endometriosis or suspected endometriosis?

diagnosed via laparoscopy

diagnosed via medical imaging

suspected endometriosis due to symptoms

suspected endometriosis via medical imaging

Other (please specify)

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* 5. How many laparoscopic surgeries have you had?

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* 6. Do you live with pelvic pain or period pain?

Yes

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* 7. How long have you lived with symptoms of endometriosis and/or pelvic pain?

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* 8. Do you also live with any of the following concerns:

adenomyosis

pcos

infertility/ low egg count

migraines

low iron

fatigue

sciatic nerve pain

bloating

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* 9. In the last 12 months, has your endometriosis or pelvic pain: Prevented you from attending work

Yes

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* 10. In the last 12 months, has your endometriosis or pelvic pain: Prevented you from attending school or university ?

Yes

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* 11. In the last 12 months, has your endometriosis or pelvic pain: Prevented you from attending social functions?

Yes

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* 12. In the last 12 months, how much money have you spent trying to managing the symptoms and pain due to endometriosis and pelvic pain?

Less than $1000

Between $1000 - $5000

More than $5000

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* 13. In the last 12 months, which of the below options have you used to manage your endometriosis or pelvic pain symptoms? (select all that you have used)

Acupuncture

Pelvic physiotherapy

TENS machine

Heat pack

Eating or diet modifications

Pelvic floor botox

Stress management techniques

Physical activity

Surgery

Counselling or psychology

None of the above

Other (please specify)

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* 14. What has been the most helpful?

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* 15. In the last 12 months, which of the below medication management options have you used to manage your endometriosis or pelvic pain symptoms? (select all that you have used)

Combined or Progesterone-only Oral Contraceptive Pill (e.g. Slinda, Zoely, Diane 35)

Dienogest (e.g. Visanne)

Hormonal intra-uterine device (IUD) (e.g. Mirena)

GnRH agonists (e.g. Synarel nasal spray or Zoladex depot injection)

GnRH antagonists (e.g. Ryeqo)

Pain medications (e.g. analgesics such as Nurofen, opioids such as Endone)

Non-steroidal anti- inflammatory drugs (NSAIDs) (e.g Voltaren suppository)

Over the counter pain medications (e.g Panadol or nurofen)

Prescription pain medication such as opioids (e.g Endone, tramadol)

Medical cannabis

None of the above

Other (please specify)

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* 16. What has been the most helpful?

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* 17. In the past 12 months, has endometriosis or pelvic pain impacted your ability to exercise?

Yes

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* 18. In the past 12 months, have you been admitted to hospital?

Yes

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* 19. In the past 12 months, have you visited to the emergency department?

Yes

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* 20. In the past 12 months, has endometriosis or pelvic pain impacted your eating habits?

Yes

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* 21. In the past 12 months, how many times did you visit your GP?

1-2 times

3-5 times

More than 5 times

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* 22. In the past 12 months, has endometriosis or pelvic pain impacted your ability to manage day to day?

Yes

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* 23. What non-medical interventions improved your symptoms or overall experience living with endometriosis and pelvic pain?

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* 24. In the past 12 months, has endometriosis or pelvic pain impacted your mental health?

Yes

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* 25. Does tracking your symptoms help understand your body or symptoms?

Yes

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* 26. What services or support do you need?

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* 27. What type of education would you like to see made available for the patient community?

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* 28. If you had access to a new targeted treatment option for endometriosis or pelvic pain pain on the PBS, would you be willing to incorporate it into your current symptom or pain management plan?

Yes

Living with Endometriosis and pelvic pain in Australia - a snapshot

About the Survey

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* 1. What state do you live in?

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* 2. Do you identify with any of the following?

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* 3. How old are you?

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* 4. Do you have a diagnosis of endometriosis or suspected endometriosis?

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* 5. How many laparoscopic surgeries have you had?

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* 6. Do you live with pelvic pain or period pain?

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* 7. How long have you lived with symptoms of endometriosis and/or pelvic pain?

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* 8. Do you also live with any of the following concerns:

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* 9. In the last 12 months, has your endometriosis or pelvic pain: Prevented you from attending work

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* 10. In the last 12 months, has your endometriosis or pelvic pain: Prevented you from attending school or university ?

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* 11. In the last 12 months, has your endometriosis or pelvic pain: Prevented you from attending social functions?

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* 12. In the last 12 months, how much money have you spent trying to managing the symptoms and pain due to endometriosis and pelvic pain?

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* 13. In the last 12 months, which of the below options have you used to manage your endometriosis or pelvic pain symptoms? (select all that you have used)

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* 14. What has been the most helpful?

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* 15. In the last 12 months, which of the below medication management options have you used to manage your endometriosis or pelvic pain symptoms? (select all that you have used)

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* 16. What has been the most helpful?

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* 17. In the past 12 months, has endometriosis or pelvic pain impacted your ability to exercise?

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* 18. In the past 12 months, have you been admitted to hospital?

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* 19. In the past 12 months, have you visited to the emergency department?

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* 20. In the past 12 months, has endometriosis or pelvic pain impacted your eating habits?

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* 21. In the past 12 months, how many times did you visit your GP?

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* 22. In the past 12 months, has endometriosis or pelvic pain impacted your ability to manage day to day?

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* 23. What non-medical interventions improved your symptoms or overall experience living with endometriosis and pelvic pain?

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* 24. In the past 12 months, has endometriosis or pelvic pain impacted your mental health?

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* 25. Does tracking your symptoms help understand your body or symptoms?

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* 26. What services or support do you need?

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* 27. What type of education would you like to see made available for the patient community?

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* 28. If you had access to a new targeted treatment option for endometriosis or pelvic pain pain on the PBS, would you be willing to incorporate it into your current symptom or pain management plan?

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* 29. Is there anything else you would like to share with us?

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* 30. Would you like to be kept up to date with outcomes of this survey? If so, include your email below: