Uniting a group of women to serve a community that is undoubtedly under-served is no easy task, but Jessica Taylor manages to do not only this but more. She’s not just a leader, she’s an inspiring woman who inspires others to dream just as big, aim just as high, and achieve just as much. Any woman who has felt the sting of endometriosis and it’s diagnostic delay is likely filled with a righteous fervour that calls her to stop the same thing from happening to other women that she has suffered herself, but it takes more than just disappointment, more than just anger at a system that has failed you; It takes vision and it takes real action to change that system for the better. Jessica Taylor has proven not only this but more. At a young age she is president of the QENDO, an organisation that has supported those affected by endometriosis for 31 years, alongside a stunning resume of of other memberships and appointments that reflect her passion for women’s health and empowerment.
Hi Jessica, thank you for joining us for our #bethegirl series. We would love to know more about you and QENDO….
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.
“If you want to go fast, go alone, if you want to go far, go together.”
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.
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.
What is one of the biggest highlights you can reflect on so far?
One of the biggest highlights has been seeing our organisation grow to a team of over 70, enabling us to expand our services into regional and rural Queensland to help those who do not have the luxury of choice when it comes to doctors or specialists and who often must educate themselves in order to educate a community. I am proud of the diversity of backgrounds of our volunteers, the many different occupations they inhabit, the heterogenous skill set that they bring to our organisation. In 2019 we have support groups in 16 different locations across Queensland, have completed a pilot schools program in 9 Queensland schools, and deliver education events each month across Brisbane, Gold Coast, Sunshine Coast and Toowoomba. Our services have evolved to supporting not only those with endometriosis, but also those with sister condition adenomyosis. It means a lot to the QENDO team to provide education and support to this patient population. I, as well as many of my team, also suffer with adenomyosis alongside endometriosis, a disease with even less name recognition than its sister endo, and now we are part of creating change for these women too.
If you or someone you know is facing the challenge of walking the path that is the diagnosis, treatment and management of endometriosis, I want you to know that you need never walk alone. I was once the girl working her way through a minefield of misinformation, looking for the right answers, and if I can help someone else in that same position find what they are looking for, I know I have done my job. I couldn’t have imagined being part of such an amazing organisation when I first heard the word endometriosis. A quote that comes to mind when I think about my time with QENDO is one by Loren Eisley:
One day a man was walking along the beach when he noticed a boy picking something up and gently throwing it into the ocean. Approaching the boy, he asked, “What are you doing?” The youth replied, “Throwing starfish back into the ocean. The surf is up and the tide is going out. If I don’t throw them back, they’ll die.” “Son,” the man said, “don’t you realize there are miles and miles of beach and hundreds of starfish? You can’t make a difference!”
After listening politely, the boy bent down, picked up another starfish, and threw it back into the surf. Then, smiling at the man, he said…” I made a difference for that one.”
That is what we do each and every day at QENDO, sometimes one painstaking starfish at a time, we make a difference. If I know I have made a difference to just one person, that fills me with joy and gratitude, but thanks to my team and the work that we do, I know that we have helped so many more, and will continue to do so. My dreams are still big and my vision is still ever evolving, but I know that I can and will re-write the story on endometriosis, so that perhaps one day there can be a happy ending.
Endometriosis affects 1 in 10. It is just as common as asthma and diabetes. Some women can have very severe pain, while others may not experience pain at all! Everyone’s endometriosis experience is different. The amount of pain, does not always correlate to the amount of disease one might have. Endometriosis is a condition where, tissue similar to the lining of the uterus, is found in other parts of the body.
Some symptoms include painful periods, painful intercourse, painful bladder or bowel motions, fatigue, IBS symptoms, pelvic pain, heavy bleeding, clotting, unexplained infertility. If you are experiencing similar symptoms or feel something isn’t quite right, listen to your body and seek advice from a trust GP. We can offer you a list of people who are experts in this field. Seeking the right advice the first time, will reduce the number of potentially unnecessary investigations and surgeries you might have.
At the moment, the only way to diagnosed endometriosis is through surgery. It is important to talk to a gynecologist who has advanced training in endometriosis and who will excise the endometriosis (if found) and not ablate. It may be possible to see endometriosis on a particular scan, depending on how deep the disease is and the training of the radiographer or sonographer. Endometriosis cannot be seen on a normal scan, MRI or CT. We can also offer a list of specialised people who have done advanced training in this area.
It is important to also work with a team who will support your health. If you are experiencing pelvic pain, working with a pain specialist or pelvic floor physio can really work magic. Seeing a pelvic floor physio who is an expert in this area can help to reduce symptoms and pain.
Here is some more info if you or someone you know is working towards some answers…
Thank you so much Jessica for sharing your personal story and the amazing work and service that you and QENDO are providing for women, their health and to empower each and every day. We are so grateful to have the opportunity to share your work and to let women know they are not alone when dealing with their health. For more from Jessica and the QENO team including events, membership and more information, follow them on Instagram and head on over to the website.
Please always seek professional medical advice over opinions when it comes to your health and wellbeing.