Research Surveys you can join

At the Pelvic Pain Foundation we are approached by researchers from different backgrounds keen to learn more from girls, women and men about their experiences. They are grateful to those who complete the survey, and often continue on to other pelvic pain research, based on what they’ve learned from the survey.

So, will it benefit you? No. Not directly. However, one of the major things holding up progress in pelvic pain, is a lack of research, and a lack of data to support extra services. Being involved in research is something that allows your voice to be heard, and helps those people with your condition in the future. They include an opportunity to be informed of the outcome of the study when it is finally completed and published, although that can be a few years down the track.

This page has surveys that are looking for your help now.

Who they want to contact? Everyone – they encourage you to share it amongst your family and friends so they receive as wide a sampling of information about those who suffer from endometriosis.

What they want to research?How much is known about endometriosis in the community.

A/Prof George Condous, Dr Mike Armour, Dr. Mathew Leonardi, Alia Nabila Tun-Ismail

Department: Acute Gynaecology Service, Nepean Hospital

Department: Acute Gynaecology Service, Nepean Hospital

This project aims to better understand what people of various backgrounds in the wider community know of the medical condition, endometriosis.

What happens to the information?

The results of the collected data will be published in peer-reviewed journals, presented at conferences or other professional forums. Information will be provided in such a way that you cannot be identified in any publication or presentation.

Will I be told the survey results?

• PPFA will provide a free PDF summary of the results on our site, once it is available.
• A link to the published journal will be provided.

How do I join the survey? – go to the link below:

https://www.surveymonkey.com/r/ENDOAWARE

And if I have questions?

Contact: +61-2 4734 2000

Email: nepean.endometriosis@gmail.com

Who they want to contact?  Women with Endometriosis who are 18 and over

What they want to research? Your experience of living with Endometriosis in Australia.

Beck O’Hara, Prof. Jane Fisher, Dr. Heather Rowe, A/Prof. Louise Roufeil

Jean Hailes Research Unit, School of Public Health and Preventive Medicine,
Monash University

PhD candidate Beck O’Hara is exploring how women with endometriosis in Australia manage their condition. She is keen to hear about your experiences with endometriosis, your medical history and what treatments you have tried. Beck is further exploring whether self-management can play a role in this complex condition.

What happens to the information?

It is intended that information about women’s experiences with endometriosis will inform improvements in clinical practice, health promotion and public policy in Australia. The results from this survey will be published in journal articles and presented at conferences in summary form so no individual can be identified.

Will I be told the survey results?

A summary of the findings will be available from the study website when they become available. If you choose to participate, you will be have an opportunity to enter your email address and receive a summary of the results. All data will be reported in summary form so no individual can be identified. This project is part of a PhD project due for completion in May 2019. It takes a long time to analyse data, so results are unlikely to be available before 2019.

How do I join the survey? – Visit them on Facebook

https://www.facebook.com/EndoAusStudy/

And if I have questions?

You can email them at: endo.study@monash.edu

Or call them on: (03) 9903 0788

Who they want to contact: Women with Endometriosis over 18 years

What they want to research: What you’ve tried? And what worked?

Dr Mike Armour, Mr Justin Sinclair, Ms Jane Chalmers and Professor Caroline Smith

Western Sydney University

Whether it is Yoga, Meditation or Cannabis, They’re keen to learn what women in the community are using right now, what works and how you found it? They want to learn from you what works, and what doesn’t, so they can direct their future research into those areas.

The survey takes about 5-15 minutes to complete.

What happens to the information?

This information will provide other women who have endometriosis information on what others have tried and found helpful, It will also collect information on any risks or side effects women have experienced. This may help women decide what they would like to try to manage their own symptoms. We will also use this information to help us guide future research into areas that women find effective.

Will I be told the survey results?

PPFA will post a free PDF summary of the results on our site, once it is available.

This survey is no longer active. Thank you to all those who participated with this research.

And if I have questions?

You can contact the researchers at armour@westernsydney.edu.au

Who they want to contact: Anyone over 18 years with chronic pain who has never had an eating disorder or weight-loss surgery.

What they want to research: How chronic pain affects your mood – increasing the likelihood that you comfort eat during a ‘flare-up’.

Imogen R O’Loughlin and Dr Toby Newton-John

University of Technology, Sydney

What are the psychological treatments that will reduce the likelihood of comfort eating in response to pain? By discovering the triggers to comfort eating Imogen aims to break the vicious cycle of pain-induce comfort eating, weight gain, obesity and worsened pain and disability.

This survey

This survey has been completed. Thank you to all those who participated with this research.

Email: Imogen.R.OLoughlin@student.uts.edu.au

Who they want to contact: Women over 16 years that experience pelvic pain with sexual activity.

What they want to research: How all women, with their diverse sexualities, experience painful sexual activity and treatment for it.

Dr Charlene Rapsey, Brooke Battersby

Department of Psychological Medicine, Dunedin School of Medicine, University of Otago, NZ

We aim to investigate heteronormative assumptions associated with the assessment and management of sexual pain and explore how this influences the experiences of women from sexually diverse backgrounds.

This survey will take less than 10 minutes.

How do I join the survey? – go to the link below:

https://otago.au1.qualtrics.com/jfe/form/SV_blSbl4U8ZK8NmIJ

What happens to the information?

This information will help achieve more equitable outcomes in treatment and care for pelvic pain conditions for women of all sexualities and circumstances.

Will I be told the results?

This project did not complete it’s required survey criterion.

If I have any questions?

You can email Brooke Battersby at: batbr604@otago.ac.nz or Charlene.rapsey@otago.ac.nz

Who they want to contact: Women who experience symptoms of endometriosis or other forms of persistent pelvic pain (e.g., Vaginismus, Vulvodynia, Interstitial Cystitis, Painful Bladder Syndrome), aged between 18 and 47 years, and their partners.

What they want to research: The impact of endometriosis and persistent pelvic pain on intimacy and relationship wellbeing.

Dr Leesa Van Niekerk, Dr Mandy Matthewson, Ms Emma Schubert

College of Health and Medicine, School of Medicine (Division of Psychology), University of Tasmania

You and your partner can take part by completing an online survey that asks questions about general mood; diagnosis, symptoms and treatment of endometriosis or persistent pelvic pain; emotional and physical intimacy; and relationship satisfaction and goals.We are also interested in understanding how much information regarding their experience of endometriosis and persistent pelvic pain women choose to disclose to their partners.

What happens to the information?

You and your partner will be providing information that will be used to assist in understanding how endometriosis and persistent pelvic pain affects couples and specific aspects of their relationship. This information can be used to guide recommendations for effective treatment by medical, mental or allied health practitioners and ultimately improve care for women diagnosed with endometriosis and persistent pelvic pain.

Will I be told the survey results?

You and your partner can request to be kept up to date with the findings of the research, as they become available, by providing your email contact details. All research findings will be reported in a summary so that individual people cannot be identified.

How do I join the survey?

If you would like to participate in the study, you can express your interest by emailing Dr Leesa Van Niekerk at Leesa.VanNiekerk@utas.edu.au and provide an email contact for yourself and your partner (with their permission).

You will both be emailed a survey link and unique access code that will direct you to the survey.

And if I have questions?

If you have any questions about this research you can contact Dr Leesa Van Niekerk via email (Leesa.VanNiekerk@utas.edu.au) or by telephoning (03) 6226 6645. All expressions of interest and questions are welcome from either member of a couple. Please note that you will not be able to ask questions about your partners responses or access copies of completed surveys. This is to ensure the privacy of each person.