The Australian Guide to Living Well with Endometriosis

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