The silver lining of my Endometriosis story…

If you suffer from Endometriosis or know someone who is, this is a story of my journey and how I’ve used my experience to my power and built a business.

I remember it was clear as day, hearing the words from my third surgeon after my fourth laparoscopy ‘it was far worse than I anticipated, I am diagnosing you with Stage 4 Endometriosis’. A bittersweet feeling really, finally some relief and validation for the dismissal from doctors I’d had in the previous years but at the same time, a million thoughts rushing through my mind because this was real and there was NOTHING I could do about it.  

Chronic pelvic pain can be debilitating and typically impacts people in various areas of their lives, from finances, relationships, and work, to name a few. Managing pelvic pain can be costly as you may be seeing a team of health professionals and using several medications. At work, pain may interfere with your concentration and your energy levels, or lead you to take numerous sick days. You may experience painful sex and intimacy issues due to the fear of pain. You may become snappier or appear flaky to friends as you have to cancel plans because of this crippling pain. Health professionals might have told you that you're imagining symptoms and that the pain is all ‘in your head’. Your pain IS real. However, recognising the role your mental wellbeing plays in pain is something not to be ignored.

“Beat the endo belly today!”

You’ve all heard it. It’s everywhere in endometriosis spaces (and online spaces in general).

I get why people say “beat the bloat” – it’s catchy and there’s a market for it. You’re absolutely justified in wanting relief from the uncomfortable (and often painful) distension that comes with endo belly. I agree with the overall sentiment. The more helpful strategies to alleviate discomfort the better.

It’s not the sentiment I’m mindful of. It’s the word “beat”.

Endometriosis affects the health of almost 1 million Australians, causing serious pain and sometimes infertility. Due to challenges with diagnosis, and because of disease complexity, endometriosis is not yet well understood. It’s time to strengthen the response: technology, data and research have reached a critical point where we can make a difference in the lives of sufferers, and their families.

IMB’s Professor Grant Montgomery and Dr Sally Mortlock, who together have nearly four decades of endometriosis research experience, are leading a project team to:

• improve the lives of those affected

• cut diagnosis time

• develop personalised management plans

This blog relates to the Australian healthcare system and how to access care, this advice is general advice designed to help you navigate your journey.

This blog series has been developed to help you navigate through your healthcare journey.

This blog is a part of a five-part series including information about the following:

1. Public vs Private Care

2. Choosing a doctor

3. Private healthcare Considerations

4. Inpatient Care and appointments

5. Practical tips for understanding your journey

Lou reflects on the concept of if only, which is something able to be understood by many within this community. Looking back on our adolescent versions of ourselves, we would have no doubt handled period pain very differently at times. However, through this blog Lou advocates for the importance of learning self-love, and caring for one’s body - reclaiming the sense of femininity again.

“As debilitating as it is, dealing with a chronic illness can be empowering. Just take your phone, open Instagram and watch. The endometriosis community is incredible! Strong advocates, standing up for themselves and helping out others. I learnt so much from reading other people's journeys and sharing mine. I would not know about excision surgery without this community.”

Lauren is the cofounder and CEO of Semaine Health and a Stage IV Endo Thriver. After decades of terrible periods (and many doses of ibuprofen), she and her twin sister and husband started Semaine with their first supplement to help people with painful periods. By living with endo, she knows first hand what it's like to feel dismissed and unseen by the medical industry. She hopes to use her empathy to help empower people with plant-based, scientific supplements that make every life stage easier and even something to be celebrated.

The journey towards healing can be an arduous path, but with acceptance comes peace. After battling her monthly, crimson visitor for 26 years Sweta has finally found her release. Having battled Endometriosis for 7 years, she acknowledges that she is still on her path towards recovery as this is not something one can achieve over night, but with hope for her future.

“This is a homecoming journey. It’s been too long since we have been far away from home within. It’s time to release and let go. It’s time to discover trust and strength within yourself, taking one step at a time, at your own pace, honouring and having compassion for your life journey, just as it is.”

Navigating other people’s pregnancy journeys can be an incredibly hard thing to do. The current narrative regarding miscarriage as a taboo, or something to be concealed is frustrating - and it’s time we change that. Let’s be okay with stepping back from expectations when we need to. Celebrate with those when we feel strong enough to celebrate and grieve with others when we need additional support. Loss is hard, and there is no right or wrong way of going about it.

Trigger Warning: this blog is focused upon the topic of miscarriage and loss. If you or someone you know is struggling, please call 1800 ASK QENDO.

Tayla has been volunteering with QENDO since 2021, and has plans to return to University to pursue a Science-based career. Having suffered for years prior to her diagnosis, she is now a proud advocate for raising awareness for our community.

One of the key pillars driving our passionate team is the education of the younger generation, who may be suffering from pelvic pain conditions. With Endo Warriors like Tayla, we are one step closer to achieving this. QENDO is very grateful for all of her contributions.

Nadia Maxwell is an Accredited Practicing Dietitian, Certified Intuitive Eating Counsellor & Credentialed Eating Disorder Clinician. She has teamed up with QENDO to navigate a complex topic, offering education and insight into the relationship dynamic between endometriosis and body image.

Content warning: this article discusses eating disorders. I encourage you to look after your wellbeing and that’s ok if that means reading no further. Eating disorder support can be found via the Butterfly Foundation National Helpline.

Finding those who champion our cause is to find our allies. The people who come into our lives and leave their mark, healing the parts of our hearts that Endometriosis has hurt. We often speak out about the physical impact this condition leaves on our body but the emotional repercussions are important to recognise too.

Mariah speaks fondly of the person who entered her life and championed her cause. With Endometriosis Awareness Month rapidly approaching, her insight and wisdom is something to be celebrated.

As a registered nurse with Endometriosis, Jordyn provides care for those who need it most. Lovingly assisting others when they need it fits her character, though throughout her own journey she has learnt to love another all too important body - her own.

Experiencing the severity of the pain that comes with this condition should not be considered ‘the norm’. Our community is lucky to have someone like Jordyn navigating the way through life, demonstrating that you can have the success of a career whilst thriving as an endo warrior.

Watching those around you fall pregnant when you are struggling is an extremely heart wrenching thing to experience. Jess bravely shares insight into her fertility journey with Stage IV Endometriosis and her journey of loss and hope.

There is a happy ending to this story - Jess is pregnant with her rainbow miracle. QENDO thanks Jess for her raw honesty regarding such important topics for our community.

Tanya’s Endometriosis journey began when she was fourteen years old, and since then she has been diagnosed with Stage Four Deep Infiltrating Endometrioses, Irritable Bowel Syndrome, adenomyosis and fibroids! Tanya has been blessed with three, beautiful boys however she raises awareness for our community and medical gaslighting. Fertility does not necessarily mean you are exempt from gynaecological problems - and should not be dismissed as such!

“I found it annoying, and it worried me that many doctors only placed value on my gynaecological concerns if it was somehow related to fertility, as though it’s okay to go through excruciating pain, missing work and life events due to my period.”

Imagine being carried out of a University lecture hall because you were rolling around on the floor in agony. For Jo, this was her reality. Knowing now that her period pain was not normal, she is thankful now that she began the journey of taking back control of her health. Her quest now is to help educate and support others living with endometriosis. Her dream - to help move others within the Endometriosis community from surviving to thriving! The QENDO community thanks Jo her for her support.

Jess Coldrey is a 2021 Victorian Government John Monash Scholar and internationally exhibited technology artist, most notably curated into exhibitions for the Australian Ian Potter Centre, Melbourne Science Gallery, and the United Nations' COP26 conference in Glasgow. From robotics and drone selfies winning her the prestigious Agendo Art Prize to her recent fashion project in Paris exploring endometriosis, her art has traversed creativity and engineering to spark new conversations about the future.

In this blog Jess shares her firsthand experience navigating endo, while also showcasing her talent as an artist. QENDO is very excited to feature Jess, grateful for the advice and wisdom she offers. She highlights the need to listen to one’s body and the importance of giving it permission to rest.

“Having been had diagnosed and now knowing the symptoms, I can look back and see some small signs of the disease in my mid twenties. These were not symptoms that impacted on my quality of life whatsoever.”

Julia bravely brings you her personal journey with endometriosis, as she shares the importance of having a diagnosis.

Kristie Harris has bravely shared her journey, and why she opted for an elective hysterectomy.

“I am now on 4 weeks post hysterectomy. I haven’t bled since day 2 post op, and I feel like a brand new woman. I cannot believe it took this long for professionals to work out what was wrong and assist me with a solution!”

Being informed there is nothing wrong is an incredibly frustrating thing to endure. Haven’t we all heard that our period pain is normal, from time to time…but it is NOT! Being diagnosed with endometriosis in the final year of schooling presented additional challenges - at an already challenging time. Chantelle bravely navigated such changes, ultimately landing her dream University course.