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