Running through endometriosis

The pain I thought was normal: My Endometriosis journey.

Your pain is real and you deserve answers and solutions. Don’t take no for an answer. Keep asking and keep searching.

For years, running had been my sanctuary. The rhythmic pounding of feet on pavement, the rush of endorphins, the quiet moments when it was just me and Sydney harbour. The fantastic audio book I didn’t want to end, thank you Barbra Streisand. For a while I felt like I was Barbra’s best friend. Running had helped me through my Master’s degree. In Covid it had become the friend that never let me down. But there I sat on the edge of my bed, doubled over with pelvic pain so intense I saw stars. My husband looked worried. I was worried. Should I go to the emergency room? No, it’s “just” your period, this will pass. Yeah just…

“It’s probably “just” perimenopause,” well-meaning friends would say. “You’re at that age you know.” “Maybe it’s menopause starting early.” The chorus of dismissive explanations grew louder as my pain grew stronger, but something deep inside told me this wasn’t right. This wasn’t normal. That’s when I went searching for answers.

What I didn’t know then was that I was about to join the ranks of over 830,000 Australian women living with endometriosis. It’s a condition that affects one in nine women and those assigned female at birth in our country. Yet it remains frustratingly under-recognised and under-diagnosed.

Two decades of “normal” pain

Looking back now, the signs were there all along. The debilitating period pain that started in my teens, dismissed by doctors as “just bad cramps.” The fatigue that would hit like a wall, forcing me to cancel plans, disappoint friends and skip my run. The pain between cycles that I learned to mask with a smile and push through with sheer determination. One doctor said oh that’s mittelschmerz a one-sided abdominal pain associated with ovulation. Fancy German word for middle pain.

For twenty years, I carried this burden, thinking it was simply part of being a woman. We’re conditioned to accept pain as our lot, aren’t we? To grit our teeth and carry on, because “that’s just how periods are.” But why should we accept a life half-lived, where pain dictates our choices? Men don’t, so why should women?

Endometriosis occurs when tissue similar to the lining of the uterus grows outside the uterus, on organs like the ovaries, fallopian tubes, and pelvic lining. During each menstrual cycle, this tissue responds to hormonal changes just like the uterine lining would, but it has nowhere to go. The result? Inflammation, scarring, and often excruciating pain. Yes, yes and yes.

Adenomyosis, my second diagnosis, is endometriosis’s lesser-known cousin. Often referred to as endo’s ugly twin sister. Even in medical terms appearance is used in a negative way. Here, the endometrial tissue grows into the muscle wall of the uterus itself, causing the uterus to become enlarged and tender. The two conditions often occur together, creating a perfect storm of pelvic pain. Lucky me!

The breakthrough moment

March 2025 will forever be etched in my memory, not just because it was Endometriosis Awareness Month, but because it was the month I finally got answers. The game-changer? A new type of ultrasound specifically designed for women’s pelvic health.

For decades, endometriosis could only be definitively diagnosed through laparoscopic surgery. This is an invasive procedure that many women, including myself, had been reluctant to undergo for what doctors often minimised as “just period pain.” But advances in ultrasound technology have revolutionised diagnosis, allowing specialists to identify endometriosis and adenomyosis without surgery. This then allows us to get moving on appropriate treatment faster.

As I lay on that examination table, watching the ultrasound technician’s face grow serious, I felt a mixture of vindication and grief. Vindication that my pain was real, had a name, and wasn’t “all in my head.” Grief for the twenty years I’d lost to a condition that could have been identified and managed so much sooner. I wish we were taught as teenagers what is acceptable pain and what is not. Then I might have advocated firmer and faster.

What we don’t talk about

Here’s what still astounds me: despite endometriosis being more common than diabetes, we still whisper about menstrual pain as if it’s something shameful. We’ve created a culture where women suffer in silence, where taking a sick day for period pain feels like admitting weakness, where we dose ourselves with painkillers and pretend everything is fine.

But what is “normal” period pain, and what crosses the line into something that requires medical attention? The truth is many of us simply don’t know. We’ve never been taught to recognise the difference between manageable discomfort and pain that signals something more serious.

Pain that interferes with your daily activities, that makes you miss work or school, that requires more than over-the-counter medication to manage, this isn’t normal. Pain during or after sex, painful bowel movements during menstruation, chronic fatigue that leaves you feeling like you’re running on empty. These are all red flags, not rites of passage. Go see your doctor and push for a specialist referral.

Finding my pace again

Ironically, while endometriosis initially stole my ability to run, it also led me back to why I loved running in the first place. As I began treatment and learned to manage my condition, I discovered that gentle, consistent exercise, including modified running actually helped manage my pain. My runner’s ego didn’t like starting at the beginning again, but my endo body was happy to gently swing my legs again even if my pace was unbelievable slow.

The endorphins released during exercise act as natural painkillers, and the improved circulation helps reduce inflammation. More importantly, reclaiming my running routine gave me back a sense of control over my body that endometriosis had taken away.

I had to relearn everything. Listening to my body’s cues. Adjusting my pace and distance based on where I was in my cycle. Accepting that some days, a gentle walk would have to suffice. But slowly, steadily, I found my rhythm again. Now, I’m back to booking in races and enjoying the training again.

A call to action

As I write this during Endometriosis Awareness Month in March 2025, I’m struck by how much progress we’ve made, yet how far we still have to go. Australia was the first country to develop a National Action Plan for Endometriosis in 2018, recognising the significant impact this condition has on women’s lives. Research is advancing, diagnostic tools are improving, and conversations are slowly starting to happen.

But we need more. We need doctors who listen when women describe their pain. We need workplaces that understand menstrual health issues. We need a society that doesn’t shame women for talking about their periods or seeking help for pain that affects their quality of life.

Most importantly, we need women to know that they don’t have to suffer in silence. Your pain is valid. Your experience matters. And you deserve answers, treatment, and support.

The road ahead

My endometriosis journey is far from over. It’s a chronic condition that I’ll manage for the rest of my life. But knowledge is power, and finally having a diagnosis has transformed my relationship with my body from one of frustration to one of understanding and compassion.

Some days are harder than others. Some runs are shorter than I’d like them to be. But I’m running again, and more importantly, I’m living again.

To every woman reading this who recognises herself in my story: you are not alone. Your pain is not normal just because it’s common. And you deserve better than a life lived in the shadows of dismissed symptoms and minimised experiences.

It’s time we change the conversation about women’s pain. It’s time we demand better. And it’s time we support each other in that demand.

Because every woman deserves to run her own race, on her own terms, without pain holding her back.

If you’re experiencing symptoms that could indicate endometriosis or adenomyosis, speak with your GP about referral to a gynaecologist who specialises in these conditions. The new ultrasound diagnostic techniques are becoming more widely available, and early diagnosis can make a significant difference in managing these conditions.

For more information and support, visit Endometriosis Australia at https://endometriosisaustralia.org

When I was deep in my research stage, I created a Padlet page to bookmark all the links I found. I hope this might help you or a friend. They are mostly Australian but there are some from the UK, US and Europe. If you have more information I can add for your location, feel free to reach out to me at pauline@paulinefindlay.com

https://padlet.com/storyrockstar/endometriosis-nbt8fko3oxy64v9i

Pauline Findlay is a story mentor, filmmaker, author and an online educator from Sydney, Australia. She is proudly dyslexic and uses her storytelling skills to help women and teenagers girls tell their best story, to live their best life.  She does this through The Leading Ladies Course