30 Years of QENDO

Reflections from a new member of an extraordinary organisation. 

Imagine a place where you feel accepted and understood; a place where you are welcomed with open arms and a warm smile. Imagine a place where you are surrounded by amazing women, who are united by a common goal and fuelled by common experiences; a place where no tragedy is taboo, no tear is shed in vain, and you don’t have to be alone. For me that place is Endometriosis Queensland, more commonly known as QENDO. It’s more than just a support organisation, it’s a family.

Founded in 1988, QENDO came from humble beginnings – a group of women determined to make a difference – their goals support, education, and awareness. The spirit of our founding members has carried through the decades and seen QENDO evolve into the organisation it is today, thirty years later. QENDO is tenacious and passionate in its mission to make endometriosis a known name to every Australian, to provide evidence-based and up to date resources for sufferers and medical professionals, and to facilitate support on an individual and group basis across a wide area.

Our thirtieth year has been one of tremendous growth and achievement. Our EndoMeets are a QENDO institution, and 2017 and 2018 has seen the rapid expansion of these meets from the Brisbane Metro area to eleven locations across Queensland, including regional areas. Our facilitators come from far and wide, their connection to their communities palpable in every meeting. In 2018 QENDO held a three part education series, our featured speakers not only doctors, but allied health and the women behind QENDO. It was a privilege to bear witness to the wonder and curiosity of those in the audience, many of whom came up to me after each event overwhelmed.

“I didn’t even know things like this existed,” one woman said to me, nearly in tears. “Thank you.”

Our smaller spotlight education events “An Hour of Endo With QENDO”, in partnership with Eve Health, inspire a similar following. Even the seasoned endometriosis warriors among our committee found themselves learning things they never knew before, determined to keep trying new ways to improve their quality of life and manage their symptoms. I have seen a transformation around me, women in the dark are stepping into the light and finding that they are not alone, that there is help, and most importantly – there is hope. Education is transformational, and I have been so thrilled to be a part of the provision of quality education in 2018 through QENDO.

2018 has also seen the announcement of the National Action Plan, the result of partnerships between Australia’s endometriosis support networks that would come to be known as the Australian Coalition for Endometriosis (ACE). Our hard-working and inspirational president Jessica Taylor has been essential in helping this come to pass. She is a force to be reckoned with – never giving up, fuelled by her passions and a notion that we deserve better, and so does the next generation. The work Jess does for QENDO cannot be understated, she gives it her all, and inspires all of us to dream big, work hard, and make QENDO everything it can be and more. Her leadership has produced a team of women that I adore working with, every one of us with our own endometriosis journey and area of expertise that provides our members with the best we have to offer. Additionally, our partnerships with medical professionals committed to best practice for endometriosis patients helps us to provide for our members. Many doctors have been long time QENDO supporters and have helped us with education resources, support clinics, and of course our education series and Hour of Endo – they include Dr Susan Evans, Dr Peta Wright, A/Prof Anusch Yazdani, Dr Graham Tronc, and Dr Donald Angstetra. Our partnerships are part of what makes it a pleasure and an honour to work with QENDO.

QENDO boasts the only endometriosis support line in Australia, a service accessible internationally. That’s where this newbie comes in. I joined QENDO in 2016 after my diagnosis in November 2015. I can still recall at eighteen being handed a neat blue business card with the damsel fly on it by Graham Tronc, overwhelmed by the half hour that had just been. I picked it up again when I was nineteen, awaiting surgery, looking for some reassurance that what I felt was endometriosis and not in my head. Once I had my diagnosis and came to terms with the what would be my new way of life, I wanted to do more. Jess answered the phone when I called about being a support worker, we spoke for nearly an hour – I was in. After being a support worker for a year Jess offered me the opportunity to be support work coordinator, taking over from the incomparable Darlene Scott who had done an exceptional job in the role for many years. I was honoured that I was trusted to take on such a role – support workers are the heart of QENDO, they answer support calls and are present at our events to ensure women with endo have somewhere and someone to turn to. It’s been an amazing eight months so far. I manage an extraordinary roster of support workers, women who have been through so much themselves but are so willing to use those experiences to help others. They do so much more than our support line. They accompany women to their appointments, answer questions at our events, and link people to doctors and health professionals that will understand what others have failed to. It is an honour to be part of this team and I am so proud of my support workers.

At Saturday night’s Gala Dinner we celebrated 30 Years of QENDO with style, surrounded by our supporters, friends, and families. It was a pertinent reminder that we are a part of something extraordinary, a long tradition that came before us, and a legacy that we will bequeath the next generation. I have only been a part of QENDO for a short slice of 30 years, but I hope to be a part of it for as long as our QENDO Advisor and founding member Jude Perryn. We are determined, we are strong, and we are just getting started. A quote from a favourite Sylvia Plath poem, ‘Mushrooms’ seems fitting:

In spite of ourselves, our kind multiplies.We shall by morning inherit the Earth. Our foot’s in the door. 

Happy 30th Birthday QENDO, thank you for letting me be a part of something extraordinary.