Pelvic Pain Foundation of Australia
The Pelvic Pain Foundation of Australia, (PPFA) is a not-for-profit charity co-founded in January 2015 by Dr Susan Evans, Ms Kathy Allen, Ms Donna Benge and Dr Meredith Craigie. PPFA was formed to promote education, advocacy and research in the area of pelvic pain, as it affects girls, women and men.
The need for a body representing those with pelvic pain was first recognised at the National Pain Summit held at Parliament House, Canberra in 2010. The Pain Summit considered the needs of a wide range of Australians with pain and developed Australia’s first National Pain Strategy. However, it was recognised in 2010 that the special needs of those with pelvic pain had not been addressed.
In 2011, the Pelvic Pain Steering Committee in collaboration with Pain Australia and the Faculty of Pain Medicine looked at ways of remedying this problem. Their report entitled ‘The $6Billion Woman and the $600 Million Girl: The Pelvic Pain Report’ consulted widely with health professionals and those affected by pelvic pain to outline the problems with current pelvic pain services and policies. It made recommendations on how these problems could be overcome. Since then, the extent of pelvic pain in men has also been recognised.
The Pelvic Pain Foundation of Australia has taken up the challenge of implementing these recommendations and representing the interests of those with pelvic pain regardless of age or gender.
Each year, PPFA runs a Health Practitioner Pelvic Pain Training Seminar with practical presentations over a wide range of topics. The PPFA website includes information for those with pelvic pain, and has a shop providing useful and difficult to obtain products for those with pain. The site has a Find Help section listing health practitioners with a specific interest in pelvic pain.
A signature program of PPFA is the Periods, Pain and Endometriosis (PPEPTalk) Schools Program. In 2022, our Health Practitioner Seminar will focus on up-skilling health practitioners to meet the needs of students who have attended PPEPTalk, and wish to take the next steps to manage their pain.
You can follow PPFA on Instagram at pelvicpainfoundationaus
You can follow PPEPTalk on Instragram at ppeptalk
PPEP Talk
The Pelvic Pain Foundation of Australia is committed to supporting teenagers who suffer severe period pain, pelvic pain, and endometriosis to allow them to fulfill their potential and live the best life possible.
To do this, PPFA has developed a medically responsible, positive, and interactive education program to schools in Australia.
Dr Evans co-wrote the Periods, Pain and Endometriosis (PPEPTalk) Program with Ms Libby Parker and Ms Kirsty Mead. She personally trains all PPEPTalk educators, provides a monthly online session for girls with severe pelvic or period pain, and provides medical support for the program. Our PPEPTalk educators all have a health qualification, and are up-skilled in pain science, medical management and public speaking.
PPEP Talk® brings a new approach to schools education. It provides the latest in modern knowledge, incorporating the new neuroscience of pain. For girls with pain, it helps them work out if their pain is normal. For those without pain, it introduces concepts that will allow them to make good health decisions if pain affects their lives in the future. PPEP Talk® has been funded by both State and Federal Governments in South Australia since 2018 and Western Australia since 2020.
In May 2021, Federal Government funding was received for a major expansion of PPEP Talk® to all Australian States where matched State funding is provided.
PPEP Talk® is free to public, private and denominations schools, and has inclusive and modified programs suitable for boys, students with special needs and indigenous students.
100% of schools who have experienced PPEP Talk® would like the program to return to their school. The experience of all students, schools and teachers is evaluated.
You can follow PPEPTalk on Instagram at https://www.instagram.com/ppeptalk/ We post pictures from the schools we visit, and useful information to help students with pain.
Australia's National Action Plan for Endometriosis
Endometriosis affects 1 in 9 girls and women in Australia. It is an area of medicine that has been under-recognised, under-researched and under-managed.
On December 5th 2017, Health Minister Greg Hunt committed the government to developing a National Action Plan for Endometriosis. This announcement was made at the launch of the Parliamentary Friends of Endometriosis Awareness group, held at Parliament House in Canberra and attended by the Health Minister, Greg Hunt, Shadow Health Minister, Catherine King, Government Whip, Nola Marino, MP Mike Freelander, and MP Justin Lessey. It followed the bipartisan collaboration between MPs Nicolle Flint and Gai Brodtmann.
The priorities of the NAPE were developed following consultation with the members of Endometriosis Australia, EndoActive, QENDO and the Canberra Endometriosis Network. This strong consumer focus developed specific goals—increased awareness, improved schools education, increased research and improved services.
To facilitate the implementation of the National Action Plan for Endometriosis, an Advisory Group with wide ranging representation was formed. The Periods, Pain and Endometriosis (PPEPTalk) Schools Program is an integral part of the NAPE.
At the launch of the Australia's National Action Plan for Endometriosis, Parliament House 2018, with fellow members of the Australian Coalition for Endometriosis: Melissa Parker, Ms Jessica Taylor, Lesley Freedman, and Syl Freedman
Resources for women with pelvic pain
Health care can be expensive, especially where building a health team requires appointments with a range of health professionals. However, there are ways of reducing the costs.
Learning more about your pain before you see a professional, means you have more time during the appointment to focus on the issues of most importance to you. You’ll also have an idea before you go about what treatment options you may be offered.
Finding the right health professionals early on means saving money on appointments with practitioners less able to help you. It saves time too. As no health professionals are trained in all areas of pain, you may need to build a team so all your needs are met.
This page describes options available for girls and women with pain that are either free or of low cost. They also prepare you better for your encounters with the health care system.
This video explains how your symptoms fit together, what endometriosis looks like, and how it is treated. The video was recorded by QENDO, the Queensland Endometriosis Association. You will need to click on the YouTube link and declare that you are old enough to watch the content. This is because it includes photographs taken at a laparoscopy.
Endometriosis and Pelvic Pain (and eBook) are available for purchase from the Pelvic Pain Foundation of Australia.
Low cost options for pelvic pain
Borrow a copy of our full size book ‘Endometriosis and Pelvic Pain’ from your library
The latest version has a purple cover with white writing. If your library only has the pink cover version, don’t worry. It still has most of the things that you, as a girl or woman with pain need.
If your library doesn’t have a copy, then you can purchase the new version from the Pelvic Pain Foundation of Australia Online Shop – $22 for the Ebook version or $27.50 plus postage for the paperback copy. It’s the cheapest expert opinion you’ll every buy.
Chapter 4 has a section on each of the common types of pain in girls and women with endo—so you can work out what your pain means, and how to treat it. Chapter 9 has important information on how medications work, and how to use them effectively.
Download the free pelvic pain booklet
This booklet includes an introduction to a wide range of pelvic pains.
Enroll in an online course in pain management education, anxiety or depression
One such course is ‘The Pain Course’ provided free of charge by Macquarie University. It teaches the knowledge you need about Chronic Pain and the practical skills for pain management and emotional wellbeing. This course is highly recommended. It takes work and commitment, but teaches invaluable skills. Anyone with an internet connection can be involved.
The Pain Course runs over 5 weeks and includes:
- 5 online lessons to provide information and teach pain management techniques.
- Homework assignments to help you practice those techniques.
- Weekly email or phone contact with a clinician.
- Lots of additional resources.
Go for a walk every day
When you have pain, it’s easy to find yourself doing less, and resting more. Even though this feels natural, it actually makes your pain worse over time. Keeping moving is essential to reducing pain. You may not be able to do as much exercise as you did, but going on a walk each day is very effective at helping your nerves and muscles work more normally. And that means less pain. As you walk, think about how you are holding your body. Sometimes without realising, you might be walking with some muscles held tightly. That increases pain.
For girls, women or men with stabbing, aching pains, or pain with intercourse
These pains are often due to pelvic muscle spasm. If you have a mix of pains, this is often the most severe pain. It’s best assessed by an expert pelvic muscle physiotherapist but these can be hard to find. The Pelvic Pain Foundation of Australia has a map under ‘Find Help’ with the location of physios with this particular interest. A great, cost-effective management option you can start straight away is the pelvic muscle relaxation audio prepared by Dr Patricia Neumann (physiotherapist). There is one for women and one for men.
You can instantly download the Pelvic Muscle Relaxation Audio at the Pelvic Pain Foundation of Australia online shop ($22).
Dr Neumann will talk you through learning how to release tension in pelvic muscles. There is a long version to learn the technique and a short version you can use every day to reduce your pain.
How to prepare well and get the best outcome from your laparoscopy
Visit the page that explains what to do
The Pelvic Pain Foundation of Australia Website includes a page called ‘Tips and Tricks for recovering well from laparoscopy’. This explains how to prepare for surgery starting at least 3 months before surgery and explains what to do and what to ask at each stage of your surgical journey through to the months after you leave hospital. Use the search bar to find this page when you visit www.pelvicpain.org.au
If you have private medical cover:
Remember that not all gynaecologists offer excisional surgery for endometriosis. If you are going to go to the expense, inconvenience and risk of a laparoscopy, it is important to make sure your gynecologist can provide what you need. You need expert surgery, AND, a surgeon who thinks about pain carefully and will explain when non-surgical options will be more successful.
The map of PPFA subscribers on the PPFA website under ‘Find Help’ is a good start. A good surgeon will not need to do frequent surgery on the same person, and will manage more than just endometriosis lesions. Make sure you read the section on Laparoscopy in the book ‘Endometriosis and Pelvic Pain’ before considering laparoscopy. You’ll be much better able to understand what your gynaecologist is offering.
If you don’t have private medical cover:
Look for the public hospital near you that has a good reputation for laparoscopic surgery for gynaecological conditions. With so many different medical conditions to care for, it is common for hospitals to develop particular areas of expertise. Always remember that not all pain needs surgery. The book Endometriosis and Pelvic Pain explains which types of pain respond well to surgery, and which types might be best treated in other ways. It also has a chapter on how to prepare for a laparoscopy, so that the experience goes more smoothly for you.
You can order your copy at:
https://www.pelvicpain.org.au/online-shop/