One of the first things many of us learnt when becoming “endo aware” was that ultrasound cannot rule out endometriosis, and that a scan is not a substitute for the gold standard - a diagnostic laparoscopy by an experienced excision specialist. Imaging technology has come a long way in recent years, particularly transvaginal ultrasound, and in the right hands it can actually prove itself a useful tool in the diagnosis and management of endometriosis and adenomyosis. So what is the role of this scan? What can it see, what can it tell us, and can we in fact diagnose endometriosis on a scan? In this blog our support coordinator and RN Dannielle takes us through the literature and the role of the specialist scanner. Let’s talk about ultrasounds.

“I’m lying in bed, one heat pack held against my abdomen, the other behind my back. I’ve taken Ibuprofen and Panadeine Forte but neither have changed the pain. I’m crying. Frustrated. Exhausted”. It’s a scenario many among us will find all too familiar, a pain that ties millions of us together around the world. This Is Endo. On the blog today we hear from Alice Ayling, who first started experiencing symptoms in adolescence but waited an astonishing seventeen years to have this diagnosis confirmed, despite a laparoscopy at 18 where the surgeon didn’t find any disease. Alice shares her path to a diagnosis, excision and, eventually, motherhood, all while coping with the debilitating symptoms that characterise endometriosis.

If anyone understands the importance of empowering others and smashing stigmas, it’s Katie Norbury. Katie is the founder of Get Papped, a community designed to start conversations outside the medical setting about cervical screenings. Cervical screenings, like endo, aren’t often talked about, often spoken about in hushed tones in private, but we know they’re so important, and we need to talk about them. In this blog Katie takes us through the ins and outs of screening, and talks about the experience that inspired her to start Get Papped.

For those affected by endometriosis, adenomyosis or PCOS, fertility is often something in the back of our minds, even when we’re not trying to conceive. When we decide to start trying, the landscape is so often new and confusing, trying to navigate not only our chronic illness, but all the components of a fertility journey. Renee Owen always had a gut feeling her journey to motherhood would not be a simple one, and this proved correct when she was diagnosed with PCOS. In this blog Renee shares her fertility story and journey to motherhood, as well as her struggles on the road to baby number two. She shares her story in the hopes of being a strength and support to others in the TTC community. CW: this blog deals with infertility and pregnancy loss.

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.