The Australian Guide to Living Well with Endometriosis

Your trusted guide for understanding and managing endometriosis

One in seven Australian women live with endometriosis. If you or your loved ones are among them, then you know just how hard it can be to get the answers you need. The Australian Guide to Living Well with Endometriosis aims to help you recognise, manage and treat this life-altering condition. Drawing on the latest medical research as well as the real-world experiences of diverse Aussie women, it delivers science-backed information and expert advice. With this book, you’ll feel more empowered to navigate all the challenges that come with endometriosis.

Endometriosis can affect body image, sex life, fertility and family planning. The daily pain experienced by many women can even stop them from fully participating in the life they choose to lead. The Australian Guide to Living Well with Endometriosis is a handbook for finding the strategies, the tools and the hope you need for navigating and managing your care. Inside, you’ll learn how to find your voice as a patient and advocate. From getting diagnosed to getting treatment, you’ll feel more confident in taking charge of your health and speaking up for yourself.

What’s more, you’ll discover you are not alone. You’ll read inclusive, deeply personal stories from real Australians — from well-known figures like Kayla Itsines and Emma Watkins to everyday women in education, business, politics and more.

• Understand your symptoms and the info you need to share with your doctor.
• Learn how to navigate the complex healthcare system and discover how different medical professionals can help you.
• Understand treatment options like medications, surgeries and physio.
• Discover how endo can affect your fertility and what’s involved in IVF.
• Get lifestyle tips and tools (including diet, nutrition and exercise) that can help in managing flare-ups.
• Read expert advice from GPs, gynaecologists, world-class researchers and other women’s health professionals.

The Australian Guide to Living Well with Endometriosis is a must-read resource for managing your physical health and overall wellbeing — so you can truly live the life you choose when it comes to home, school, family, sports, work and beyond.

Foreword xvii

About the author xix

Introduction xxi

Part I | Tune in: Understanding endo 1

1 What is endometriosis? 3

Are heavy, painful periods normal? 4

Symptoms to look out for 5

Genetics and gastrointestinal issues 7

What about adenomyosis? 8

Does endometriosis have different stages or levels? 8

Endo myths and facts 11

What causes endometriosis? 13

What might be going on in the body? 13

2 Understanding the pain and fatigue 17

Understanding pelvic pain 17

Unwelcome friends 25

Am I more likely to have other chronic conditions as well as endo? 25

Part II | Track, Tell, Test: Getting a diagnosis 27

3 How do I find a name for my pain? 29

Endo is more common than you think 29

The journey to get tested and diagnosed 30

Track your symptom impact 31

Heavy menstrual bleeding 35

4 What kind of doctor do you need? 39

What symptoms do GPs look for in endometriosis? 40

Creating your care team and plan 41

Professor Danielle Mazza AM on how a GP diagnoses endo 44

A referral to the gynaecologist 47

Dr Tarana Lucky on what to expect at the gyno 48

5 What to expect from examinations and tests 51

Rachel Andrew on preparing for a physical exam 52

Pelvic examination 53

Medical imaging 54

Ultrasound 54

Imagendo 55

Associate Professor Magdalena Simonis AM on symptoms and testing 58

Dr Tarana Lucky on tests at the gyno 60

Part III | Treat: Considering your options 63

6 What are my treatment options? 65

Over-the-counter medications 65

Analgesics 66

Non-steroidal anti-inflammatories 66

Palmitoylethanolamide (PEA) 66

Prescription medications 66

Why are they prescribing the pill? 68

Hormone treatment options 69

Traditional and alternative options 76

7 Considering surgery 81

Laparoscopic surgery 81

Hysterectomy 85

8 Fertility and infertility 89

How does endo impact fertility? 90

What to expect from a fertility specialist 92

Fertility treatment options 93

Starting the IVF process 94

Professor Luk Rombauts on how endo impacts fertility 95

Dr Samantha Mooney on treatment options 97

Dealing with the tough stuff 102

9 Multidisciplinary care 107

Biopsychosocial approaches 107

Stephanie O’Kane on supporting patients’ varied needs 110

Allied health 114

Akaiti James on her approach to holistic care 116

Rachel Andrew with the lowdown on physio below the belt 118

Acupuncture for endo 122

Osteopathy for endometriosis 123

Dr Lisa Gadd on different endo therapies 124

Benefits of massage for endometriosis 125

Psychological support 127

Physical activity and exercise 127

Mind-body practices 128

Pacing activities 128

Stress management 128

Sleep hygiene 128

Emotional support 128

Integrative health 131

Body image 132

10 Relationships 139

Dads as endo supporters 141

Endometriosis and its impact on intimate relationships 142

Educational resources 145

Couples counselling 145

Endometriosis and its impact on family planning 146

Sex and intimacy 147

Intimacy beyond sexuality 147

Daily life and responsibilities 147

Social isolation 148

Support networks 148

Part IV | Try it out: Holistic lifestyle and self-care 149

11 Lifestyle and self-care 151

‘Nothing about us without us’ 152

12 Diet and nutrition 155

Are you what you eat? 155

The daily dozen 157

Adapting your diet to what works for you 158

Low-FODMAP diet 159

Anti-inflammatory diet 161

Omega-3 fatty acids 162

To soy or not to soy? 162

Gut microbiota and endometriosis 163

Antioxidants and gut health 164

Benefits of fermented foods 165

Dr Eliza Colgrave on balancing diet and exercise 165

Heal. Nourish. Support. Balance. 169

13 Exercise for endo 173

Rolling with life’s curveballs: Lisa’s story 174

Dr Lisa Gadd’s endometriosis stretches to attain ‘living health’ 176

Protecting with abdominal exercises 179

14 Rest and recuperation 187

Listening to what your body needs: Ellie’s story 187

Fatigue and Spoon Theory 188

Cold therapy 192

Heat therapy 196

Part V | Take it on: Know your rights 199

15 School and work 201

Endo girls 202

Teachers need to step up 204

LongSTEPPP 205

School education 206

Endo gendernomics 207

About Bloody Time 211

Endometriosis and the workplace 214

16 Medical misogyny 231

How the medical world excludes and ignores women+ 232

End Gender Bias survey 233

GP gender pay gap 237

Bias in research funding 237

17 Intersectionality and inclusion in care 239

Aboriginal and Torres Strait Islanders 240

Dr Maryam Moradi on increasing awareness of endometriosis 249

Lgbtqia+ 250

Part VI | Take action: Global efforts 257

18 What’s the future of endo research and policy? 259

National Endometriosis Clinical Scientific Trials Registry 259

Professor Jason Abbott on the need for multi-disciplinary support for people with endometriosis 260

Parliamentary Friends of Endometriosis Awareness 262

National Action Plan on Endometriosis 263

Endometriosis and pelvic pain clinics 263

Global endo efforts 267

The gift of philanthropy 270

Acknowledgements 273

Resources 279

References 295

Index 317

Maree Davenport serves on the World Congress on Endometriosis organising committee, chairing Community Liaison. Previously on the Australian Government Endometriosis Expert Advisory Group, she served as CEO, Chair and on the board of an endometriosis charity. Her daughter and niece are endo warriors. Maree is a former Member of Parliament, with a Master of Leadership in Gender Equality.

‘I wish I had access to information about living well with endo sooner. There was nothing like this available to me when I was diagnosed at a young age. This book will be amazing for those on their endo journey.’ — Kayla Itsines, personal trainer, author and co-founder of Sweat

‘The impact of endometriosis on the lives and wellbeing of women is profound. Despite this, many aspects of the disease are poorly understood, and high-quality treatments are lacking. Maree Davenport shines a light on this complex disease with informed input from a wide range of stakeholders. Essential reading for anyone wanting to understand more about living with endometriosis.’ — Peter A W Rogers, Professor of Women’s Health Research, University of Melbourne; Director of Research, Royal Women's Hospital; Founding Director, Jean Hailes for Women’s Health

‘This book will be life-changing for women of all ages. It will help end the silent suffering that’s been the “women’s lot” for generations.’ — Associate Professor Magdalena Simonis AM, women’s health expert; Department of General Practice and Primary Care, University of Melbourne.

‘A much-needed, evidence-based, accessible book for those living with endometriosis and challenged by fertility.’ — Professor Luk Rombauts, Medical Director, Monash IVF; Past President, World Endometriosis Society; Past President, Fertility Society of Australia and New Zealand

‘I wish this book had existed when I was younger, lost in the maze of pain and uncertainty, searching for answers. It might have been the guide I needed while navigating the long road to diagnosis and understanding my own body. May this book provide some guidance and support on your endo journey.’ —Ellie Angel Mobbs, award-winning broadcaster and podcaster

'A useful, usable companion for all those with endometriosis or caring for someone with endometriosis.' — Professor Jason Abbott, Obstetrics and Gynaecology, UNSW Sydney Australia

‘The only way we can effect improved endometriosis care is by brave people sharing their stories. Congratulations to Maree Davenport and her contributors for explaining the challenges, providing context, understanding and advocating for change in this book that will positively impact many people’s lives.’ — Professor Louise Hull, University of Adelaide Endometriosis Research Group; Deputy Head of Department of Obstetrics and Gynaecology, Women’s and Children’s Hospital Adelaide; International Ambassador for World Endometriosis Society