If there’s anyone that understands the power of sharing your story to reassure, inspire, or support others, it’s founder of Got You Girl, Sophie Stewart. Got You Girl aims to inspire, educate and start the conversation around taboo topics like endometriosis, periods, mental health and domestic violence (to name just a few). It’s also an incredible source of information on a variety of topics, all in the one spot. QENDO is excited to host Sophie on our blog, a space where we too strive to share the stories, resources and carefully curated content you need. In this blog Sophie talks about the magic of sharing your story, and the importance of platforms like QENDO and Got You Girl to create space for voices to be heard.

At QENDO this Mother’s Day we are celebrating Mums of all varieties: from our own mothers who fought alongside us as we tried desperately to get our diagnoses, to those of us who have become Mums ourselves, sometimes after years of trying. We also celebrate those still on their fertility journeys, those who have lost children, those who have lost their mothers, those Mums growing their families. We see you, this day is for you too, and send our love and support to those who may find this day hard. In this blog, Amanda Burgess shares her experience of being a Mum while also contending with stage four endometriosis. We thank Amanda for taking the time to share her story so honestly, in a way that so many of us with endometriosis can relate to.

Endometriosis Awareness Month saw organisations like QENDO leading a national conversation around endometriosis awareness, diagnosis and treatment, with more attention than ever before focused on this condition that affects 1 in 10. But there’s another conversation that we still need to have at the national level, and that QENDO is committed to facilitating; and that’s about endometriosis and mental health. Hannah Davies is helping to do just that, and in this incredible feature article she talks with Belle Grech and QENDO’s own Isabella Gosling about the experience of endometriosis, how it can impact mental health, and what the road forward looks like for those affected.

Nutrition and diet can play an essential role in the management of endometriosis. While there is no one evidence-based “endo diet” that works for everyone, especially given the varied symptoms we all experience, there are a number of strategies that we can put in place to support overall wellbeing and symptom management. Working with a dietitian with an interest in reproductive health is a great place to start, which is why we’re excited to welcome Rhiannon Stone, an accredited practising dietitian from Balance Nutrition, to the blog to talk about the role of resistant starches for endometriosis.

Did you know that a pelvic physiotherapist can be a key member of your adenomyosis team? For many pelvic physio can make a life-changing difference in the management of persistent pelvic pain associated with adenomyosis, helping them to make strides in improving their pain and quality of life. Rachel Fitt is a Melbourne based pelvic floor and continence physiotherapist, and co-host of the Listen Up Ladies podcast. Rachel is passionate about all things pelvic health and empowering her clients to achieve their goals throughout the lifespan. To close April for Adeno, Rachel takes us through adenomyosis, persistent pelvic pain, and the role of pelvic physiotherapy in managing these symptoms.

As we come towards the end of Adenomyosis Awareness Month, it’s important we continue to use the awareness and momentum we have gathered during this month to continue advocating for those affected by this condition. Like QENDO, Caitlin McDonough is committed to adeno awareness and advocacy. Caitlin is founder of The Adeno Project, an online space committed to sharing accurate information on all things adenomyosis, as well as dispelling the many myths surrounding the illness. Through this work Caitlin aims to destigmatize pelvic pain and launch a toolkit for others to utilise for education and support. Though based in the USA, The Adeno Project has become a familiar online friend for many of us in the adenomyosis community worldwide, and at QENDO we’re so excited to bring you this blog from Caitlin for the end of April for Adeno.

Self-love is hard when society and media are constantly reinforcing ideals around body size, beauty and aesthetics. When you have a chronic illness, self-love is even harder. You constantly feel let down by your body, or anxious for when your next flare will be, or why can’t it be ‘normal’? This is compounded by the visual reminders too. Scars. Stretchmarks. Scald marks. Reminding us of the pain our bodies have been through.

However, what if we decided to show our bodies kindness, and grace instead and even though it’s hard, worked at actively accepting them, celebrating them and being proud of them for carrying us through each day? This is what we hoped to achieve with fourteen incredible women for our QENDO x The Endo Journal Self-Love Shoot as part of April for Adeno.

Adenomyosis often goes undiagnosed due to a poor awareness of the condition in both the medical and general community. This lack of recognition contributes to delays in diagnosis, and a great personal and financial cost to those affected by adenomyosis. Angelica Gosling has been experiencing the symptoms of adenomyosis since 14, but it wasn’t until last year that she finally received a diagnosis. As part of our April for Adeno Angelica shares her experience with living with adenomyosis. While her diagnosis and ongoing management has come at great cost, she also reflects on her newfound passion for raising awareness and supporting others with adenomyosis,

As part of April for Adeno, QENDO is shining a light on the costs associated with adenomyosis. If there’s anyone who understands the extent to which chronic illness can cost you, it’s Chelsea Timandi. Diagnosed with endometriosis and adenomyosis at the tender age of fifteen, Chelsea has had to come to terms with the gravity of living with chronic illness at a time when others the same age are focused on friends, school, and the future. Chelsea is an incredible advocate for patient-centred adenomyosis care, and the mind behind Instagram account @chronicallyillgoddess. Now, at 18, she is putting her passion towards studying nursing, to give back to a profession that she acknowledges has taken such good care of her throughout her adolescence. Let’s talk adenomyosis with Chelsea.

Adenomyosis, like it’s sibling endometriosis, is often described as an invisible disease, a silent disease, because there remains a number of major barriers to diagnosis, despite many of those affected by adeno experiencing debilitating symptoms, sometimes daily. Aroha Liebhart has previously shared her journey to an endometriosis diagnosis with QENDO, but today on the blog she shares her adenomyosis story as part of April for Adeno. Aroha hopes that what readers take away from this blog is that, like adenomyosis, you needn’t be silent about the pain and symptoms impacting your life.

Having a chronic condition is expensive and we didn’t ask to have one, or two or more of them bestowed upon us. This isn’t anything new to the chronic illness community, we get it, we understand it, we live it. However for those not acquainted, it costs a lot. As part of QENDO’s April for Adeno, a member of our community shares her experiences with paying for treatment associated with her adenomyosis and endometriosis, and the emotions associated with realising just how much one can sacrifice financially to these illnesses over many years. In this blog she challenges you to share what adenomyosis has cost you - not just financially. It’s time for us as a community to speak up, start the conversation and make a change that those with chronic illness are crying out for.

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.