April is Adenomyosis Awareness Month, and it’s time adenomyosis gets the recognition it deserves. Many of those effected with endometriosis also have adenomyosis, and it may be a source of ongoing pain after excision of endometriosis. Adenomyosis enjoys even less name recognition than endometriosis, and while endo awareness is starting to become a national conversation, adenomyosis is still often met with confused expressions and a lack of knowledge. At QENDO, we’re starting the conversation this April for Adeno, and so it’s time we took a closer look at all the facts. What exactly is adenomyosis, what’s in our toolbox, and what are some of the myths surrounding the disease?

April is Adenomyosis Awareness Month, and as one of the conditions that we provide support for, we’re highlighting the realities of living with a disease that has even less name recognition than endometriosis. Georgia Stuart is a chronic illness advocate and the mind behind the Instagram account @theendojournal which is a hub of information, real talk, and support for those experiencing chronic illness. Having been diagnosed with endometriosis, adenomyosis, and fibromyalgia herself, she is passionate about advocacy and education. To launch QENDO’s April for Adeno, and continuing our theme of “What It Cost Me”, we bring you this very special Q&A with the amazing Georgia.

In this blog Kim Salleh shares an intimate and thought provoking video diary of her journey to surgery number three, an excision surgery that brought with it the hopes for some relief from the increasingly debilitating pain associated with her endometriosis. She touches on her own growth as a patient, learning to research and advocate for herself, and the emotions and frustrations associated with waiting for a surgery you know will have an important impact on your quality of life. As part of our What It Cost Me theme for Endometriosis Awareness Month, Kim also shares some of the expenses she has encountered over the last eight years during her endo journey.

Endometriosis is the full time job you can’t quit, the one you don’t get paid for, the that YOU pay for. Sometimes it’s your second job, for others their only job, because the strain of endometriosis can be profound enough to cost you your ability to work consistently or at all. It can be tiring engaging in the work of finding specialists and team members, managing new symptoms, and coping with unexpected flare ups. It’s not just money - it’s time and unpaid labour too. In this blog Stephanie Moore shares her experience of endometriosis, and her own personal cost, which is so much more than money.

Throughout Endometriosis Awareness Month, we’ve shared the many varied stories of those who make up the endometriosis community. Though each presentation of endometriosis is as unique as the individuals themselves, a common theme has emerged. Endometriosis may be expensive, but what it costs so many of us is time. Time spent trying to get a diagnosis, time spent seeing new doctors or health professionals, time spent recovering from surgery, time spent waiting for a flare to be over. Morgan Cruikshank has experienced the symptoms of endometriosis since adolescence, but it took her over ten years to receive a formal diagnosis and have the excision surgery she needed for severe endometriosis. In this blog she talks about her journey to diagnosis and ongoing management, advocating for others to build a team they can trust to live with and manage endo.

Endometriosis is expensive. Receiving a diagnosis, managing our condition, taking time off work, cancelling plans, trying a new treatment, another surgery - they cost us, and not just financially. We don’t talk about these costs - in the same way we’re taught to speak in hushed tones about our periods, we’re told it’s not polite to talk about money. But we need to. This month, for Endometriosis Awareness Month, QENDO is shining a light on all the things endo has cost our community - both the tangible and intangible costs. This month we continue to ask: why, in 2021, does it cost so much to be diagnosed with, and manage, a disease that affects 1 in 10? This week we’re talking about the cost of endometriosis with Lauren, our QENDO Mentor Program Coordinator and a registered nurse. Lauren talks about the investment of time she has made in managing her symptoms and illness, and highlights some of the ongoing expenses associated with endometriosis, the kind that inevitably add up.

Endometriosis affects 1 in 10 people born with a uterus. It’s a disease that’s as common as asthma or diabetes and yet there is still a discomfort in talking about the many different facets of the disease. It’s thanks to those of us in the endometriosis community who share our stories and start the conversation that this has begun to change. During Endometriosis Awareness Month, we’re breaking the stigma and shining a light on the many different endometriosis stories within our community. In today’s blog we hear from Melissa, a travel lover from Tipperary, Ireland who now calls the Gold Coast home. Mel was diagnosed with endometriosis, and eventually PCOS, after a journey that started with her first laparoscopy at just fifteen.

This month at QENDO we’ve been shining a light on some of the costs associated with having endometriosis, because it’s something we just don’t talk about enough. What about when endometriosis costs you more than those financial costs? Katie Wilson shares about just this in today’s blog, which explores her journey with endometriosis and chronic pain from a young age, and the barriers she has faced as a result. Endometriosis can be undoubtedly expensive, but money is just the beginning of what it may cost us.

Around 29% of Australians live in a rural or remote area, with the Australian Institute of Health and Welfare identifying that access to services in these areas is a key factor which contributes to poorer health outcomes (AIHW, 2018). For those affected by endometriosis in these areas, there is not simply limited access to services, there is often no access whatsoever to specialist endometriosis care, necessitating travel into regional hubs or major cities hundreds of kilometres from home to simply seek an opinion. In this blog we hear from Prue Luck, a pharmacist living on a property in central Queensland, two hours from the nearest regional town. Prue shares her experience of living with endo in the outback and shines a light on a huge added cost associated with her treatment after travelling to Brisbane to get the expert care she needed.

Rebecca Malon is a Brisbane based osteopath and clinical nutritionist in women’s health, and is passionate about empowering people to nourish their bodies and live life to the fullest, without compromise. Bec comes to this place of passion and knowledge from her own experiences with endometriosis and infertility, a space where she was keen to create change. Like many affected by endometriosis, Bec was assured many of her most problematic symptoms were normal and upon receiving her diagnosis initially found it hard to accept that she even had endometriosis. As part of Endometriosis Awareness Month, Bec shares her journey to diagnosis and through infertility in the hopes that it will help others who may be affected by endometriosis, infertility or recurrent miscarriages.

CW: This post deals with the topics of IVF, infertility and pregnancy loss. If any of these topics are triggering for you, consider returning to this post at another time and reaching out to your support network.

For Endometriosis Awareness Month, QENDO has been shining a light on the often unspoken costs of endometriosis, both financial and personal, bringing attention to the many stories within the endometriosis community. The personal cost of an infertility diagnosis associated with endometriosis, and the often co-occurring conditions of either adenomyosis or PCOS, is all too real, and one that needs to be spoken about. QENDO Treasurer, and Darling Downs/Women’s Health Expo Facilitator Ash Webb shares her experience with infertility and the emotional journey to baby number two. Ash shares her story in the hopes that others experiencing infertility know they have a support network in QENDO and the TTC community - a support that she has found invaluable during this time.

CW: This post covers pregnancy, IVF and infertility. If you’re currently struggling with any of these subjects and any of these may be triggering for you, you may need to revisit this post at another time and reach out to your support network.

March is Endometriosis Awareness Month, and at QENDO we’re sharing stories from the 1 in 10 people affected by endometriosis in our community. This week we travel to our New Zealand community and meet Meg, who has had a long and eventful journey with endo, undergoing multiple surgeries before being officially diagnosed. Though her endo has been challenging in every aspect of her life, Meg has still managed to achieve the amazing feat of completing a half Ironman - a lifelong dream. This March she is competing again, all while raising awareness for endometriosis - team QENDO is cheering.

This month, for Endometriosis Awareness Month, QENDO is shining a light on all the things endo has cost our community - both the tangible and intangible costs. Join us this month in asking: why, in 2021, does it cost so much to be diagnosed with, and manage, a disease that affects 1 in 10? Our What It Cost Me theme continues with physiotherapist Lauren Goodwin, who takes us through some of the facts and statistics surrounding the cost of endometriosis, interwoven with her own personal journey.

The endometriosis community is incredibly diverse, with each individual’s unique story part of the rich tapestry of endometriosis awareness. Endometriosis is often plagued by the myths that surround it: endometriosis is just a bad period, endometriosis means you can’t have children, endometriosis only effects women, endometriosis can be cured by pregnancy, endometriosis is a career woman’s disease…and so on. These myths perpetuate an image of what an individual with the illness looks like, but the reality is so much more diverse. In “Endometriosis Looks Like Me” we challenge the notion that endo looks like just one thing, and present the many varied facets of a life, and an individual, with endometriosis. In this blog we meet Giorgia Mori, an Italian woman living in Brisbane, a researcher and scientist, a mother. Giorgia is passionate about making the invisible side of endometriosis visible through creative works, and in this blog she generously shares her story and a thought provoking video about the reality of invisible illness.

Endometriosis is expensive. Receiving a diagnosis, managing our condition, taking time off work, cancelling plans, trying a new treatment, another surgery - they cost us, and not just financially. We don’t talk about these costs - in the same way we’re taught to speak in hushed tones about our periods, we’re told it’s not polite to talk about money. But we need to. This month, for Endometriosis Awareness Month, QENDO is shining a light on all the things endo has cost our community - both the tangible and intangible costs. Join us this month in asking: why, in 2021, does it cost so much to be diagnosed with, and manage, a disease that affects 1 in 10? To kick off QENDO March, our support coordinator Dannielle tells the story of her endometriosis diagnosis, and how the financial cost was both a major barrier to diagnosis and added almost two years to her diagnostic delay.

Did you know that QENDO now offers a counselling service for those affected by endometriosis, adenomyosis, PCOS and infertility? This service is tailored specifically to the needs of our chronic illness community to provide that extra level of personal support you may need. In part three of our three part series on the benefits of counselling, Amanda explores the “where” and “when” - including the different formats of counselling, some tips for those engaging with a counsellor via the digital space, and some signs that it may be time to add counselling to your chronic illness toolbox.

Niamh is the other half of @thoseendosisters, and her sister Freya has previously shared her story on the QENDO Blog. Niamh’s journey started at the age of fourteen, and at 23 she was diagnosed with both pelvic and diaphragmatic endometriosis and interstitial cystitis, after years of heavy bleeding, severe pelvic pain, and fatigue that led to a period of her not being able to walk to work or around the shops without feeling exhausted. In this blog Niamh shares her story and her current management of both conditions to reach out to anyone else who may be experiencing the same, and reassure them that endometriosis doesn’t have to be the end of your life as you know it.

Olivia’s journey to diagnosis began at the tender age of eleven when she first began experiencing symptoms. At 18 she first started to actively to pursue a diagnosis, having had enough of her debilitating symptoms. By the time she was formally diagnosed at 34, Olivia had learnt to advocate for herself, do her research, and ask for what she needed for her body. In this blog, Olivia shares this journey to diagnosis and her message of support and encouragement to others who may find her story far too familiar. You can follow Olivia on Instagram at @sisterdoinitforherself

Freya is one half of dynamic duo @thoseendosisters on Instagram, an account dedicated endometriosis and IC awareness, education and support that she and her sister Niamh started after both being diagnosed with endometriosis. Despite experiencing suspicious and ultimately painful symptoms from a young age, Freya found herself struggling to convince GPs of the seriousness of her symptoms, and as a result went without a diagnosis for years. At 21, newly diagnosed with endometriosis, she is passionate about advocacy and education, and is one of the many voices calling for change in the United Kingdom, where the diagnostic delay for endometriosis remains even greater than that of Australia. In this blog, Freya shares her story and how she now manages her condition, in the hopes that others will feel empowered to speak up when something doesn’t feel right.

Did you know that QENDO now offers a counselling service for those affected by endometriosis, adenomyosis, PCOS and infertility? This service is tailored specifically to the needs of our chronic illness community to provide that extra level of personal support you may need. In part two of our three part series on the benefits of counselling, Amanda explores the “what” - getting into the nitty gritty of what to expect from the counselling process, the approaches your counsellor may take during your sessions, and some of the red flags that your counsellor may not be the right fit for you or your situation.