Advocating for a Loved One August 2021 event with Maxine Drake, advocate

Endometriosis & Intimacy June 2021 event with Helena Green, Clinical Psychosexual Therapist, Couples Therapist, Clinical Sexologist & Counsellor

Accredited Practising Dietitian, Claudia Coombes presented the topic of Endometriosis, Diet and Nutrition at our April 2021 support group meeting.

Psychologist and clinical hypnotherapist, Rachelle Domansky presented the topic of Endometriosis and Mental Health at our February 2021 support group meeting. This workshop explores maximising mental well-being while coping with the myriad challenges of endometriosis. Learn about the effects of pain, stress, and fatigue on levels of anxiety and depression and how to combat these. Strategies for achieving and maintaining good mental health will be shared. With 30 years of experience in the Asia-Pacific region, Rachelle has worked in the fields of psychology and education within service providers, schools, universities, and private practice. She has an interest in women's health and pain management. With professional and personal experience in managing chronic health conditions, Rachelle is looking forward to engaging in support and information sharing for our group.

Special guest and experienced Advocate, Maxine Drake presented at our support group meeting on the topic of endometriosis and advocacy. Advocacy is the support of others in their negotiations for services or other entitlements. Maxine worked as a ‘health consumer advocate’ for 16 years and now uses the skills of advocacy in a wider range of areas, including schools and community. Maxine says, “sometimes fighting for yourself alone can just be too hard. Another person can tip the balance in power or confidence in new ideas”.

In this snippet, Kiera explains when you should see a doctor. In short, severe pain during or outside of your period that: • Causes you to miss school/work/university/commitments • Lasts for several days • Makes you avoid sexual intercourse • Greatly impacts your daily life.... Should not be dismissed! However, Kiera explains how your choice in doctor is important. Not all doctors are adequately trained to diagnose endometriosis – not even all gynaecologists. For an accurate diagnosis, seeing an endometriosis specialist – a gynaecologist who has undergone further speciality training is required.

Dr Judith Thompson & Jo Morris are Pelvic Health Physiotherapists who specialise in treating conditions related to the pelvic area, like endometriosis. Judith and Jo discuss how physiotherapy can best help to manage symptoms often associated with endometriosis such as pelvic pain, pain with intercourse, changes in bladder and bowel habits, to help optimise quality of life. They also discuss common questions of endometriosis patients such as; “What exercise is recommended with endometriosis?”, “Why are my pelvic floor muscles important?” and “How can I self-manage my pelvic pain?”.

Recently, board member @Kiera Collier delivered a lecture at the University of Western Australia on Endometriosis. You may have noticed we’ve been sharing snippets from her lecture with you. Kiera completed a Bachelor of Biomedical Science, majoring in Medical Science at UWA last year, and will soon be studying a Master of Public Health and Graduate Diploma in Health Promotion. Kiera also suffers from endometriosis, as well as multiple other chronic conditions. These factors enabled Kiera to give a well-rounded lecture encompassing the biomedical, public health and factual information surrounding endometriosis, as well as an insight into the patient experience. Kiera volunteers with EPSS in her spare time, on our board, as part of the events team and Facebook moderation team. She was recently awarded the City of Canning Youth Citizen of the Year for her voluntary efforts. Kiera has a strong passion for endometriosis awareness and advocacy, public health and health care. Aside from that, Kiera loves to travel, paint and dance! In this snippet, Kiera explains how important support groups are in the management of chronic conditions and endometriosis. She discusses how EPSS has provided her with a sense of validation and connection, enabled her to make friendships with those in similar situations, helped her to stay motivated and shown her some tips and tricks for managing endo! Most importantly, Kiera says, “the acquisition of knowledge equals power, the power to make a change. If I hadn’t learned some of the things that I did from the group, I wouldn’t have had the power to stand up and make a change”.

Here are some tests that are used in the process of being diagnosed with endometriosis: • Clinical history & physical examination • Other causes of pelvic pain explored: e.g vaginal swabs, urinalysis, pap smear etc. • Pelvic ultrasound – fibroids, ovarian cysts and endometriomas • Transvaginal ultrasound – better visualizes endometrium and uterine cavity, DIE (deep infiltrating endometriosis) • MRI and/or CT – pelvic masses, DIE However, Kiera makes the point that despite all of these tests – they CANNOT confirm the diagnosis of endometriosis. The gold standard for a confirmed diagnosis of endometriosis is laparoscopy, with biopsies of endometriotic lesions to histologically confirm diagnosis.

In this video, Kiera discusses the cost of endometriosis in Australia. Endometriosis cost more than 7.4 billion in Australia (2017-2018). These costs were comprised of healthcare, absenteeism, lost social and economic participation and reduced quality of life. This is most likely an underestimate! Also, Kiera makes the point to think about what else endometriosis costs. She says:, “Don’t just think about economic costs! Does endometriosis cost friendships? relationships? opportunities?

In this very important video, Kiera explains the difference between excision and ablation surgical techniques during a laparoscopy, and why EXCISION is the gold standard for endometriosis care. In a laparoscopy, the excision technique is when the endometriosis lesions, adhesions and/or endometriomas are cut out. Laser is often used as a tool during an excision surgery; however, ablation is when only the surface of the lesion is burned. The diagram in the video demonstrates this concept. Excision is like a trowel, if we think of the endo like a weed, all of the roots have been cut out. Ablation is like a “flamethrower”, in which the top of the weed is burned, leaving the roots behind – and hence leaving an opportunity for regrowth. People who have had ablation surgeries often end up back in surgery within a couple years due to this regrowth. Hence – EXCISION is what we want!

In this video, Kiera gives an overview of the National Action Plan developed in 2018 by the Turnbull government, with contributions from many organisations and individuals. Overall, the goal of the National Action Plan is to create, ‘A tangible improvement in the quality of life for individuals living with endometriosis, including a reduction in the impact and burden of disease at individual and population levels.’