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The Pelvic Pain Foundation - How Their Program Is Impacting The Next Generation Of Endometriosis Sufferers and Allies.

The Pelvic Pain Foundation - How Their Program Is Impacting The Next Generation Of Endometriosis Sufferers and Allies.

The Pelvic Pain Foundation of Australia is a not-for-profit organisation formed to build a healthier and more productive community by improving the quality of life of people with pelvic pain. They recognise that pelvic pain affects many people of all genders, ages, ethnicities, and social backgrounds. They aim to minimise the suffering and burden of pelvic pain on individuals, their families and the community through awareness, education, funding, support, and research.

The Pelvic Pain Foundation of Australia is the body behind PPEP Talk®, a fun, medically accurate and age-appropriate information session incorporating the modern neuroscience of pain, of benefit to all students, particularly the 1 in 4 girls and people assigned female at birth with severe period pain. 

The Spoonie Society spoke to the Executive Director of The Pelvic Pain Foundation of Australia, Kirsty Mead about PPEP Talk®.

TSS: What inspired beginning this wonderful initiative - PPEP Talk?

The Pelvic Pain Foundation of Australia had identified that teaching students about pelvic pain and endometriosis was a way that we could help reduce the time to diagnosis of endometriosis and improve broader health outcomes. We knew that if young people knew more, they could be empowered to self-advocate and improve their health trajectories. We put our money where our mouth was and piloted the Program in South Australia. When the National Action Plan for Endometriosis was developed in 2018, the women surveyed identified education as the number one priority to ensure this generation of young people had better outcomes. With small but proven success, we were ready to deliver on that priority.


TSS: What are some of PPEP Talk's biggest achievements to date?

It would be very easy to talk about the numbers when answering this question, and of course, delivering this information to close to 50,000 students across Australia has been an enormous achievement but if you ask any of our Clinical Educators, they will talk to you about the individuals who come up after each session to talk about their own pain and how PPEP Talk® has made them recognise that they may have a problem. Impacting individuals is truly our biggest achievement. Last week we visited the southeast of South Australia where we were told that in each of the four years we had delivered PPEP Talk® to their school, one student had been diagnosed with Endometriosis. That’s four young people who may have otherwise waited for years for a diagnosis and not lived a full life in that time. Stories like that are our biggest achievement


TSS: What are you still hoping to achieve with PPEP Talk?

We have a few goals for PPEP Talk®. At the moment the NSW Government has dragged their heels committing to the Program, so Government school students in NSW are missing out, I hope this changes with the newly elected Government, so that is an immediate Goal.

PPEP Talk® is only delivered to approximately 20% of Australian schools. We can’t lose sight of how far we’ve come, and are seeing some genuine impacts with the commitments in this space, but we have a lot of work left to do.  The data we are collecting is sadly saying that the problem is much larger than we ever thought, which is why we won't rest until all students across the country get access to this information.

My personal broader vision remains the same, and the PPEP Talk® Clinical Educators are probably tired of me saying it, but we never want to be a doorway to nowhere. There is no point in educating young people if they then visit a health practitioner who can't recognise, diagnose or treat these issues. That isn't putting down health practitioners at all, I think it is a tough gig to be a GP and be expected to know so much about a broad range of topics. We are working to change this with Education for all Health Practitioners to upskill, so that people with endometriosis and pelvic pain have good health pathways.

TSS: In regards to Endometriosis, why is early intervention so important for young girls and people assigned female at birth?

So many people in your audience would have been told that their pain is normal, so I feel like I'm telling you nothing new here. It is unacceptable for anyone to have to wait years for a diagnosis and treatment. The earlier that young girls and people assigned female at birth learn about endometriosis and pelvic pain, the more agency they have in their own outcomes, leading to them staying in school, participating in sports and community, holding down jobs and doing things that are important to them.


TSS: What kind of feedback have you received from students or their parents who have been involved in the program?

The best feedback is that 100% of the schools we have visited would like to have us back. We survey each student and teacher and reading the comments is a really fun part of our job. We are proud of some of the commentary around the delivery of our education including how much students learn, how interesting the program is, and positive feedback on our use of inclusive language. Of course, we are teaching teenagers, so along with the really encouraging “this is so important” and “this was fantastic” comments, we also see some hilarious and random observations.


TSS: What is your biggest piece of advice for a young person who leaves your program thinking they may have Endometriosis?

Our advice is always to seek the help of a GP or Health Practitioner. Before we deliver the program to a school, our clinical educators are always aware of the health services in that area so that we can pass on good information. We also run the PPEP Talk® Next Steps Program. This is a free online session run every six to eight weeks with Associate Professor Susan Evans and Emma Kirkaldy, our Senior Clinical Educator and Pelvic Health Physiotherapist. We encourage students who identify within our sessions that there may be a problem to bring a loved one along to these online sessions and learn more about periods, pain and endometriosis. PPEP Talk® Next Steps provides detailed information about endometriosis and pelvic pain along with self-help strategies, especially important if the young person doesn’t have immediate access to a Health Practitioner.


This is why The Spoonie Society are excited to donate $1 from every order this March to The Pelvic Pain Foundation of Australia for this year's Endometriosis Awareness Month.


Want to get involved?

You can also get involved by donating to the program and enrolling your school on their website

You can also find The Pelvic Pain Foundation of Australia on Instagram @pelvicpainfoundationaus and Facebook /pelvicpainfoundationofaustralia.

Join the conversation about Endometriosis and tag us on Instagram @thespooniesocietyau and Facebook /thespooniesociety

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