Living with Endometriosis

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. 

Most importantly, QENDO volunteers are a collective of strong and inspiring women.

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.

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. Throughout my time of learning to manage this condition, I have learnt a toolbox approach is the very best option. It encourages individuals to understand their personal values and work with products or services aligning to those values. 

I have tried most treatment options and over the years learnt what does and does not work for me. I will be honest here, it was not easy and I shed many tears of frustration. But it did work. 

What you want is right on the other side of consistency. This is where I found my balance. A good mix of gentle daily exercise, good foods and working with a mentor and team to help me achieve this was my “magic pill”.

I needed to then find the tools and products to support me and this is where I found Active Truth for the days where you just do not feel like wearing anything. My Active Truth tights gave me the comfort and support I needed, even in those days of a flare. Their compression fit material meant I felt supported physically as I moved through my stretches and poses. They did not dig in and I felt totally comfortable — even in pigeon pose! 

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. 

For endometriosis support go to www.qendo.org.au or call 1800 ASK QENDO

Author

Jessica Taylor, president QENDO.

You can view Active Truth's Endometriosis Support range here.