Firstly, could you give us a little introduction to who Jessica Taylor is :)
My name is Jessica Taylor and it’s an honour to be the president of QENDO, an organisation that exists to support anyone affected by endometriosis. The organisation is made up completely of volunteers, driven by their desire to make a difference in the lives of those with endometriosis. These volunteers make up our support work team, who provide support via phone on Australia’s only endometriosis support line, a support worker available 365 days a year to anyone who needs it. They are the EndoSisters that provide one on one support to those stepping foot into the brave new world of endometriosis, the helping hand many of us wish we had when we were first diagnosed. They facilitate our community support groups, where women can come together over a cup of coffee to share their stories and share resources, many of them finding a sisterhood they never knew existed. They organise our education events, where experts in the field of endometriosis give their time to educate sufferers, family, friends, and health professionals on the many facets of the disease. More recently this includes the launch of our schools program in partnership with Pelvic Pain Foundation of Australia, to deliver education about periods, pain and endometriosis in schools, emphasising that painful periods are not normal. Most importantly, QENDO volunteers are a collective of strong and inspiring women, without whom I could not hope to achieve so many of my dream and goals. It is an honour to lead them and I am thankful for my team each and every day. I’ve always been a person with big dreams and goals, passionate about bringing people together, united by their desire to not only press for change but make it happen. Many years ago I recall telling a colleague of mine that one day I was going to lead a women’s charity, one where I could make an actual difference, it’s a comment I hadn’t thought much on until recently until I realised: here I am, doing it.
Tell us about QENDO?
QENDO aims to provide education, information and support to women affected by endometriosis in Queensland. From our humble beginning over 30 years ago, QENDO now supports anyone affected by endometriosis, adenomyosis, PCOS or infertility, across Australia.
Could you share your experience and journey with endometriosis?
I suppose my endometriosis journey began like so many others, debilitating pain that I couldn’t explain, trips to emergency that yielded no answers, GPs who didn’t listen, eleven of them in fact. Until I found one who did, and suggested I may have endometriosis. I promptly asked, what the hell is endometriosis? After talking to some of my family, who naturally had questions for me, I was suggested the name of a specialist in Brisbane. After seeing this doctor I was booked in for a laparoscopy within the week, and I had my diagnosis: endometriosis. While relieved to have uncovered a piece of the puzzle, the picture was anything but complete. I tried a number of treatments, varieties of the pill, hormonal treatments, but none of them worked for me. In fact, the treatments wreaked havoc with my moods and clarity of mind. Someone suggested that I try Chinese medicine and acupuncture, at a point where I needed copious amounts of opioid analgesia to merely get through the day, building up an immunity to their effects. Though it was a slow start, weekly acupuncture eliminated my reliance on opioids.
I continued in this fashion until a different pain began to surface, it was increasing and unrelenting. Throughout this experience I was engaged in a constant search for answers about what was happening inside me. Why my body? What could I do? Who could I turn to? I have seen this story reflected in the weary expressions of the women I have met through my work with QENDO, they too have fought for answers, often getting nowhere fast and feeling isolated in the process. I decided that there must be more to this issue, there had to be a community out there, surely I wasn’t doomed to walk this path alone? At first glance it appeared that there was no support near me, and my advice from others outside of Queensland was the same. It was then that I contemplated starting my own charity, but along the way I found QENDO. I spoke at length with QENDO’s president at the time and she gave me an understanding of the community and an appreciation of the history of the organisation and movement. Hearing this I was called to join the cause, passionate about making a difference in the lives of those affected by endometriosis. I recognised QENDO for the great organisation that it was,made up of women who had been trailblazers at a time where social change, particularly on an issue that related primarily to women, was a monumental task. I had big ideas and a vision about where this organisation could go, of how many more people we could help.
In 2017 I became the president of QENDO and was able to bring so many of my ideas to life with the help of my team of volunteers. We were able to launch an jewellery and product range that directly raises funds for our support and education services, while also helping people feel part of the endometriosis community through items that raise awareness. In 2018 we held a three part, interdisciplinary education series that brought together some of the best minds in the field to provide practical education for sufferers. We also established our spotlight education talks, the now incredibly popular “An Hour of Endo With QENDO”, which delves into one drop in the vast ocean that is endometriosis over an hour, with a wide range of health professionals donating their time and expertise. This series remains incredibly popular with health professionals and patients alike, and has expanded to three other locations since its inception.
Could you tell us a little more about the QENDO EndoSafe Workplace program?
From my learnings and working with people affected, it became clear how important it is to engage the workforce, and so the workplace program was developed. The program works with employers to understand the disease and provide education and training to assist their staff towards better health. We have learnt better understanding and an awareness of the struggles people live with and opportunities to support them, makes a positive influence on the workplace relationships and culture.
How can people get involved? Do they have to be based in QLD?
While QENDO was for many years a Queensland based organisation, we now serve the nation. Anyone is welcome to reach out and discuss opportunities to get involved. It is about building the communities and developing the people in your area.