Endometriosis can profoundly affect an individual's capacity to work, often resulting in chronic pain, fatigue, and various other symptoms. These challenges may lead to reduced productivity, higher absenteeism, and difficulties with concentration.

Endometriosis is linked to a higher risk of depression and anxiety disorders. It's important to remember that seeking help is not only okay, but also encouraged. Here are some common reasons individuals with endometriosis may choose to seek support:

• Pre-diagnosis and post-diagnosis support

• Preparation for treatment, surgery, or hysterectomy

• Navigating the effects on relationships, social life, and career

• Addressing infertility or miscarriage experiences

• Developing effective coping strategies

• Managing changes in sexual intimacy

My name is Lucy, I have just turned 35,  I am planning an epic journey to paddle 3070 km from source to sea on the Yukon river and I have Stage 4 endometriosis! So how did I get here?

Well I grew up in a family that loved adventure, in Far North Queensland on the Atherton Tablelands. We were always outdoors, in the rainforest, out at the reef, climbing mountains and swimming in creeks. I had parents who taught me to give anything a go, saying ‘you don’t know if you can do something until you try’ and trying is the most important thing. So from a young age I was always taught that it was better to try and fail, then not try at all. So that means that I have always tried new things. 

🌟 Announcing QENDO’s Statewide Connected Communities Support Program

We are proud to launch our Statewide Connected Communities Support Program, bringing virtual and community-based support to people across Queensland. This program will work closely with local communities to connect, build capacity, and upskill local health professionals and support networks, ensuring people can access resources and support.

We’re partnering with communities to ensure people, especially those in rural and remote areas, feel supported and heard.

Menopause is a natural biological process, yet it remains a complex and often misunderstood topic. For those with conditions like endometriosis, navigating menopause can be particularly challenging. During the recent Canberra Health Session hosted by QENDO, Dr. Iranthi De Silva shared invaluable insights on menopause and its intersection with endometriosis. This article aims to break down some of the key points from the session, offering an educational resource for those looking to better understand this stage of life.

When I was 21, I was diagnosed with PCOS and then when I was 22, I got diagnosed with endometriosis.  Essentially, that's how Your Bliss was born. It was not something that I went into being like, ‘I'm going to start a brand’, it was more that I couldn't find anything on the market that was what I wanted to buy, so I decided to make it for myself. It led to a fully-fledged perfume business without the hormone-disrupting chemicals. It’s something that a lot of women who have endo, and those who don't, now have the ability to buy and use every day. 

I remember starting my endo journey. It was my surgeon and my doctor at the time that said, ‘you should look at the things that you're putting in and on your body’. It's quite overwhelming if you want to move to a non-tox life and swap everything, because there's so many things that we use every day. Perfume was one of those things where I didn't think there was anything in the market that was really a low-tox version. There were either commercial fragrances or essential oils, and there was nothing in between.

It can be a difficult thing to reflect on what the journey looks like, and when my Endometriosis story really began.. Most would assume it starts like most typical stories, a start, middle and an end. However my story begins in the middle as I would soon realise there is no ‘end’ to a journey that constantly evolves.

Only a short time ago, January of 2023, I found myself increasingly ill and with a sharp, stabbing pain that felt like I was being cut open with hot razor wire. Given that I had suffered from a lot of intense pain which led me to be bedridden, this was something I had not experienced with this level of pain being a 10 out of 10 the worst pain imaginable. I found myself in the ER, waiting hours to be treated, only to be doubted by doctors that anything was wrong on arrival. They decided before they dose me up and send me home to do a quick internal ultrasound. This is where they discovered I had had a 13cm, tennis ball sized chocolate ovarian cyst rupture. A cyst I had no idea I even had, and a term ‘chocolate’ I had also not understood. Within the next few hours I was rushed into Emergency Laparoscopic surgery to stage off internal infection and do a ‘discovery’ to figure out what else was happening as the only way to figure this out was to operate.

My name is Alice and I am a 24 years old, discussing my journey and diagnosis of endometriosis, adenomyosis and PCOS. My first period was at the age of 16, which lasted 3-4 days. Since my first period I experienced irregular patterns of menstruation which could range from 1 to 8 months in between. Ever since I can remember I have had painful periods which involved days off school and withdrawing socially from unexplained severe pain. From my first period I struggled to wrap my head around whether it was normal to have this much pain and how much it should impact my social, physical and mental health. I received my PCOS diagnosis first which involved what felt like hundreds of appointments with GP’s, endocrinologists and gynaecologists. It was picked up on an external and internal ultrasound when I was 17 years old.

Hello! We are Matilda and Jelliane, and we have just completed our first placement with QENDO!

At the beginning, we were both anxious and excited to be offered a placement with QENDO. Though we both have a strong interest in women’s health, we also have limited experience in this field.

Throughout our university degree (Bachelor of Health Science, UQ), lectures and assessment pieces would be focused on currently recognised public health priorities such as cardiovascular diseases and mental health. Endometriosis was a health issue that was rarely discussed, if not, never mentioned at all in our academic setting. We found ourselves quickly stuck into research to understand and empathise with this condition. Thus, our placement journey began.

I am a gynaecologist working at Vera Women’s Wellness – a women’s health practice just outside Brisbane.  I see women day after day with period pain,  chronic or persistent pelvic pain with and without endometriosis.  Through my work I know that many women feel lost and unsupported on their pelvic pain journey – particularly those who have either had multiple surgeries to remove endometriosis, and those who have had a laparoscopy but found not to have endometriosis and still have pain. 

There is also often a feeling of helplessness for women who are suffering with pain and are on a waiting list for surgery feeling that there is nothing they can do to improve their pain prior to surgery. 

I can really empathise with you if you are in one of these positions and feel powerless and hopeless.  Unfortunately, these are very common scenarios I see facing women with pelvic pain every day. 

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.