What was the beginning of your endometriosis journey like before you knew what was happening?

My earliest symptoms of endometriosis including heavy and painful periods started at the age of 11. At that age, I didn’t know that what I was experiencing wasn’t normal – I just thought this was the way things were for girls and that I was “weak” compared to other girls in my class. I remember being picked up from school one day in severe pain and wishing in my head that my dad would take me to the hospital, but not saying anything out loud to him because I thought I should be tougher and put up with it.

When were you diagnosed, and what was your journey to getting diagnosed like?

I was diagnosed at the age of 31, more than 17 years after first seeking help. My journey was full of confusing and poor advice from a range of doctors, including comments that I should just get used to it, that I should see a psychologist because these issues were clearly “in my head” and even a suggestion (at the age of 21) that I should just have a baby because that “would fix it”. There were also a number of times where I was not believed, told I was drug seeking if I presented at emergency, or to take two Panadol and get over it.

What did it feel like to finally have a name for what you were experiencing?

I had known for several years that I likely had endometriosis, but hearing that I did felt so validating. I finally knew I wasn’t crazy. I cried from the relief of it.

How does endometriosis show up in your body and daily life?

The biggest impact endometriosis has on my life is fatigue. I never wake up feeling rested, I don’t remember that feeling anymore. Getting through the day can sometimes feel like a blur. That fatigue robs you of being able to fully participate in life, whether that be work, friendships, hobbies or relationships.

How would you describe the pain or physical challenges of endometriosis?

There’s always an underlying level of pelvic pain that nags at me and makes me easily irritable. Sometimes that pain flares. At its worst, endometriosis pain feels like I’m dying, or I wish I would die – it’s the worst pain I’ve ever experienced. Imagine someone tearing your insides apart and then setting them on fire. Sometimes I can’t believe I can be in that amount of pain and still be conscious.

Do you have “good days,” and if so, what do they look like?

I think everyone has good days and bad days no matter what’s going on in your life. Mine is no different. On good days I can forget for a while about the pain and get fully immersed in whatever is going on in my day.

How has endometriosis affected your education, work, routines, or ability to make plans?

Work is a tough one. I have a very understanding workplace and consider myself lucky for that because I have managed to keep a full time job despite taking a significant amount of sick leave and needing a lot of support like being allowed to work from home and sometimes working staggered hours. However, I have had to change my view of what a career could look like for me. I don’t dream of a high ranking job anymore because I know my body couldn’t handle it, and I’ve had to find ways to content myself with staying in my current position.

Has endometriosis had an impact on your finances or access to care?

Endometriosis care is expensive. While I was in the public system for a number of years, to get the best care you have better options in the private system. It’s thousands of dollars a year in tests, scans, medications and surgeries. And that’s not taking into account the opportunity cost of lost income from taking unpaid sick leave.

What has your experience been with treatments, surgeries, medications, lifestyle changes, or other approaches?

I’ve tried everything. Thrown the book at it, you might say. I take so many medications I need a pill pack like you see grandmas with. Some things have helped but there is no cure and ultimately the disease has continued to progress.

What has it been like to live with a condition that often isn’t visible to others?

Having an invisible illness is incredibly challenging. People expect you to be fine, even some people that know I have this disease struggle to understand my situation. And because it isn’t visible, I often feel the need to try and pretend like it’s all fine too.

What has the emotional or mental side of living with endometriosis been like for you?

Having endometriosis has made me much stronger mentally. I have never been more resilient, tough or in touch with my emotions than I am today. I’ve learnt that it is my best defence against this disease taking over my life so I work hard to stay mentally healthy.

How has endometriosis affected your relationship with your body, identity, or sense of self over time?

I feel divorced from my body. I talk about it in the third person. I will say things like “my body has given up on me today” or “I think my body is having a sulk!”. I keep my personal identity separate from my body.

How has endometriosis affected your family relationships, friendships, or dating life?

I found it really hard to form a relationship because I couldn’t believe there was anyone out there that would want to be with someone as damaged and broken as me, who needed as much care as me. When I met my current partner I kept pushing him away because I thought when he found out the truth of what my life is like, he wouldn’t want me anymore. Luckily for me he is the kindest, sweetest, most patient man who persisted with me and wouldn’t let me give up on myself. He showed me that love is not conditional on health and that I was worthy of love, care and lots of fun along the way.

More broadly, what are your thoughts on how the medical community understands and prioritizes endometriosis?

It’s pleasing that awareness of endometriosis is increasing and there’s lots of research being done. I would love to see more focus on understanding the cause and potential cures for the disease, rather than solely focusing on diagnosis. While a diagnosis is helpful, there are limited effective treatment options and more needs to be done to try and slow or halt the disease (or better yet to prevent it).