How Can An App Be Part of Your Chronic Illness Toolbox?

It’s a question we at QENDO have asked ourselves over the years as each of us tries to assemble a toolbox to manage our endometriosis, adenomyosis and/or PCOS. The toolbox is intimately personal to each individual, and in a perfect world it’s an Avengers assemble kind of situation - doctors, allied health, and complementary practitioners at the ready, as well as your individual strategies like pain medications, a TENS machine, a meditation routine, a heat pack, a podcast, a tea cup with a sassy quote on it to house your favourite flare friendly blend. There are so many things that make up an individual’s toolbox that it can be overwhelming. How do you keep track of everything? How do you communicate all of this to a friend, a family member, or to a doctor in the emergency department as you cry in pain? An app may be just the thing.

In August QENDO acquired Manage Endo, a data-driven app created by Morgahna Godwin to holistically manage endometriosis. Yesterday Premier Annastacia Palaszczuk and Health Minister Steven Miles announced a $426,800 investment to QENDO to develop an app that is custom designed for those with endometriosis, adenomyosis and PCOS. As Australia’s longest running endometriosis charity, and national leaders in the support and education services we provide to both the Queensland and Australian community, we recognise our duty to provide resources to this community that are tailored to their needs.

From yesterday’s announcement:

“This is a great initiative for women and the countless sufferers plagued by such a painful and crippling disease.”

“Many sufferers think the pelvic pain, headaches, painful cramps, infertility and feeling exhausted are just a normal part of life until they eventually seek help and learn they have endometriosis,” the Premier said.

“So many women don’t know why they can’t have a child.

“They feel under great pressure and so do their families.

“Many eventually seek help and they learn they have crippling endometriosis.

“It’s imperative we contribute to improving women’s knowledge of this painful affliction and
their health outcomes and the new app from QENDO is so vital in this regard.”

Health Minister Steven Miles said the funding helped QENDO create a new app tailored specifically for the needs of women with Endometriosis and pelvic pain and the families that support them.

“Through the app, women will be able to track and report their symptoms, develop a care plan, and use many resources to assist in their treatment.

“The app also allows for peer-to-peer support, with women being able to share their experiences and knowledge with others in a similar position.”

QENDO President Jessica Taylor said the app is invaluable and will help women to remember that they are not alone, and support is available.

“Endometriosis has a huge impact on not only on individuals and their families, but on our health system, our education system and businesses,” Ms Taylor said.

“For too long, women have been suffering in silence or had their symptoms dismissed due to a lack of understanding of this disease.

“Our goal for the app is to help give women a voice, and tangibly track and share their health journeys with their support network and wider community. We encourage women to create a toolbox and this app is at the core.

“Most importantly, the app aims to improve the quality of life of patients through better treatment, diagnosis and will be a useful tool in helping us ultimately find a cure

You can read the full announcement here.

Our support line, EndoMeet Facilitators and community support workers receive feedback that consistently highlights the difficulty patients have navigating the health system with these conditions. So many of us find consistent obstacles in translating our experience into something that sparks action from a doctor. We find ourselves feeling isolated, unsupported and in pain, throwing our hands up in defeat. Sometimes life with endo can seem all too difficult. At QENDO we asked ourselves how we could help make that journey a little easier and more integrated, to help the 1 in 9 women affected by endometriosis, the 1 in 10 affected by PCOS and the as yet unquantified number living with adenomyosis. What if you could keep track of symptoms, appointments, dietary triggers, mood, medications, and anything else that affects your condition? Then you could share that with someone - a doctor, an ED nurse, your specialist - to help them better understand how they can help you, whatever the situation. That’s where our app comes in.

President Jessica Taylor In yesterday’s press conference emphasised the idea that an app can give women a voice and help them to understand they are not alone. In a modern world of social media where connection with those trekking similar paths to oneself is often found online, we want our app to acknowledge the importance of peer support. Peer support is something important to the QENDO team, reflected by the popularity of our EndoSister Program, and our 31 year history of providing help through our support line - peer support is at the heart of our organisation. It’s easy to feel isolated, even though 1 in 9 women have endo, because for so long the problems of reproductive health have not been discussed in a way that allows people to feel comfortable speaking up when something doesn’t feel quite right, or worse, not knowing what “not quite right” feels like. Peer support within an app is another means of forming a supportive community in which those with endo, adeno and PCOS can carve out a space where there voice is heard.

Why is it so helpful to track symptoms, develop a care plan and be able to share your health journey with other members of your health team? Endometriosis, adenomyosis and PCOS are not diseases that exist in isolation - they do not affect merely the organs where lesions or cysts are found. They are whole body diseases and management should reflect that. It can be a challenge to keep track of everything you experience, and you might find yourself asking “is that endo, or something else?”. An app is a brilliant way to track symptoms and link them to triggers, your cycle, or even your mood. You and your healthcare team may gain valuable insights into how to manage your symptoms and thus improve your quality of life, ability to work and manage fatigue. Most importantly, an app that’s driven by your input will recognise the uniqueness of your experience with endo, adeno and PCOS, because everyone’s experience is different. There are a myriad of possibilities, and so we need your help to develop the perfect app for YOUR toolbox.

Part of app development is consulting not only the medical community, but you, the consumer, because you know better than anyone the myriad of factors that shape your disease every single day. If you’d like to get involved, head to www.qendo.org.au and take our survey! We want to know how you utilise technology to help with the management of your endometriosis.

The app will be available in June 2020, stay tuned for further news and updates here!

If you are in need of immediate support, please contact our support line 1800 FOR WOMEN to receive a call from our on call support worker. Support workers are trained to help you with talking through all things endometriosis, adenomyosis, and PCOS. Please note that support workers do not provide medical advice. If you feel you are in crisis, please contact an appropriate crisis hotline such as Lifeline (13 11 14), as our support workers are not crisis counsellors.