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

Hell

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

This year and its been horrific

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

Relief and grief

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

Everywhere and in most ways

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

Agony

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

Not anymore

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

Completely

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

Yes

What has your experience been like with doctors, specialists, and navigating the healthcare system?

Terrible

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

Also terrible

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

Isolation

Have there been times when you felt dismissed or not believed about what you were going through?

All the time

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

Lonely

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

I didn’t believe my body

Beyond treatment, have you found anything that genuinely helps you cope physically or emotionally?

Sharing with other women

Have you connected with others who have endometriosis, either online or in person? What has that experience been like?

I’ve tried some of it is hard

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

Finally only now

How do you feel endometriosis is represented in society or the media? What would you like to see change?

More awareness and on adenomyosis too

What would you like more people to understand about endometriosis?

Gaslighting Yourself

People often talk about being gaslit by the medical system. What they don’t talk about is what happens next.

It’s when you start gaslighting yourself.

For years, I convinced myself what I was feeling was normal. I worked full time in a very demanding 24/7 job, raising three beautiful girls with a husband that worked away, while travelling a lot for work and I just kept showing up, even though my body was slowly unravelling.

People told me I just had bad periods and I was moody. I struggled through because just keep swimming right? Then we moved to our dream block and just as I started to relax the pain stopped being monthly and became part of everyday life.

Looking back now, there were so many pieces of my puzzle. There were the fertility struggles. Two years of trying to conceive. Endless tests. Clomid. Wondering why my body wasn’t doing what everyone else’s seemed to.

Then came the pelvic pain that never really went away. The left-sided sciatica. Chiros leaving me screaming on the table. Extreme lower back pain. Bloating that made me look six months pregnant. Bowel pain. Pins and needles that led to CT scans and MRIs with no answers. Even chest pain that resulted in heart investigations. Every symptom was investigated on its own, but nobody seemed to step back and look at the bigger picture.

Eventually, neither did I.

When scan after scan is reassuring, tests come back normal and appointments end without answers, you start believing the problem is you. You stop complaining. Maybe everyone else copes better. Maybe you’re overreacting. Maybe this is just what getting older feels like.

That was the hardest part.

Not the pain itself, but slowly losing trust in my own instincts.

It took more than a decade before just last week, a DIE ultrasound in Sydney (I’m in regional NSW) finally confirmed I have adenomyosis and multiple large deep infiltrating endometriosis lesions on my uterosacral ligaments tethering my uterus and sidewall.

My diagnosis has brought relief, but it also brought grief. Relief because I finally have an explanation. Grief because I can’t stop wondering how different life might have been if someone had connected the dots years earlier.

Im in ED it seems every week, on all the opiods heatpacks etc, my poor daughters are pre teens and think this is what they will have to deal with too! I pray they don’t.

I’m waiting for a consult with Dr Choi in 4 weeks and a laproscopy to follow, but one thing has changed.

I no longer question whether my pain is real.

My body had been trying to tell me something for years. I just stopped believing it.

If sharing my story helps one woman trust herself instead of dismissing what she’s feeling, then it will have been worth it.

Because the worst kind of gaslighting isn’t when someone else convinces you your pain isn’t real.

It’s when you finally convince yourself.

When you think about the future, what fears, concerns, or hopes do you have?

For my daughters