Adenomyosis x Pelvic Floor Physiotherapy with Rachel Fitt
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.
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Talking Adenomyosis with Caitlin from The Adeno Project
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.
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Chronic Illness x Self Love | In Collaboration with @theendojournal
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.
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What It Cost Me: Angelica's Adenomyosis Story
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,
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What It Cost Me: Q&A with Chelsea from Chronically Ill Goddess
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.
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Adenomyosis, Not So Silent, Not So Sneaky
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.
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"Out of Pocket, But Not Out of Mind": What It Cost Me
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.
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Introducing Adenomyosis
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?
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What It Cost Me: Q&A with Georgia from The Endo Journal
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.
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What It Cost Me: Kim's Journey to Surgery
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.
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"Managing My Health Is My Second Job": What It Cost Me
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.
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Talking Endo and Team Building with Morgan Cruikshank
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.
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What It Cost Me: Spending Time With 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.
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Breaking Down the Stigma with Mel McInerney
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.
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What It Cost Me: More Than Money
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.
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What It Cost Me: Endo in the Outback
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.
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Bec's Endometriosis and Infertility Story
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.
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Ash's Journey to Baby Two
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.
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Megan's Endometriosis Story
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.
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What It Cost Me: The Facts
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.
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