Endometriosis Awareness: A Journey Through Pain, Strength, and Hope

In honour of Endometriosis Awareness Month and in light of recent conversations in the media about whether it is real or not, I thought I’d share my story. Because if you’ve ever doubted the existence or severity of this disease, I can assure you – it’s real. It’s painful. And it’s life-altering.

When Emma Watkins (aka Emma Wiggle) spoke about her experience with endometriosis in 2018, I felt a sigh of relief. Finally! Finally, people were taking notice. Maybe, just maybe, they would start to believe – not only that endometriosis exists, but that it comes with debilitating pain and a whole host of challenges that stretch far beyond physical discomfort.

And when I say debilitating, I don’t use that word lightly. I have memories of being on the floor, curled up on the couch, in bed, sitting on the corner of a train seat – writhing, folded over, desperately trying to find any position that might relieve the intensity of what was happening inside my body.

Since I was 15, my periods came hand in hand with pain. And yet, I was told:

🥺 “This is normal.” 🥺 “Take aspirin.” 🥺 “That’s just life”….always my favourite. 🥺 “Drink more water.” 🥺 “Get over it.” 🥺 “It can’t be that bad.”

It’s funny how memories come streaming back when you start to recall something you’ve worked so hard to forget. When you’re told for so long that it’s in your head, you do start to believe it. And perhaps the most painful part? These dismissive comments didn’t just come from strangers or doctors. They came from family, friends, teachers, and even people in leadership positions.

But this blog isn’t about seeking pity. It’s about awareness. It’s about education. It’s about sharing an experience that, while unique to me, will have elements that resonate with many others who suffer from this condition.

What is Endometriosis?

Endometriosis is a disease in which tissue similar to the lining of the uterus grows outside the uterus. For me, it was primarily in the bowel, ovaries, and pelvis.

Here are some key highlights of my journey:

😔 5 operations 😔 2 colonoscopies 😔 Hormone therapy – loading me with progesterone

😀 My introduction to holistic medicine 😀 3 children 😀 Tubes tied 😀 Full hysterectomy

😔 And at 53 – endometriosis is still here.

That’s right. Even after multiple operations, no uterus, and no estrogen, it’s still something I live with. The pain is not as unbearable as it once was, but it’s there – lingering like a reminder of what my body, mind & soul has endured.

The Journey: Misdiagnosis, Dismissal, and Pain

One of the most frustrating aspects of living with endometriosis is the journey to diagnosis. It took years of suffering before anyone took me seriously.

At 19, I visited my GP, desperate for answers. Instead, I was told I had chlamydia.

Me: “😳 Ummm, I haven’t had sex.”

Doctor: “I don’t believe you. You have it. Take these tablets.”

Me: “WTF?!?!?!”

I left that doctor’s office feeling humiliated, unheard, and defeated. I never spoke to that GP again. Instead, I started self-medicating because dealing with the pain on my own seemed better than facing that kind of ignorance.

Four years later, I was finally referred to a gynaecologist, leading to my first operation. Less than a year later, the pain returned – worse than before. I was told by a panel of doctors at a women’s hospital that my symptoms weren’t real.

“It doesn’t grow back that fast,” they said.

But it did. And it hurt more than ever.

The Emotional Toll: Loneliness, Fear, and Shame

Living with endometriosis isn’t just about the physical pain. It’s lonely. It’s scary. It’s shameful. And at times, there’s a deep, unspoken grief for the life you’re struggling to live.

In my mid-20s, I had a miscarriage.

Doctors told me: “We told you – you can’t have children.”

But the issue wasn’t conceiving. The issue was implantation. My body was not able to sustain pregnancy because of the damage and inflammation inside me.

Then, despite everything I had been told, I went on to have three children. But even that didn’t stop the disease from progressing. Pregnancy gave me a temporary reprieve, slowing the regrowth. But the moment my hormones returned to normal – so did the pain.

At work, I faced more judgment.

“If you’re having ‘women’s problems,’ maybe you should rethink your career.”

“My wife doesn’t have those issues.”

I can still remember sitting in meetings, feeling chunks of my uterus lining passing. Chunks the size of a mandarin – or bigger. And it wasn’t just from the vagina. The inflammation and adhesions meant I was also experiencing bleeding from the bowel.

And yet, I was told it was unprofessional to miss meetings or to leave because I was on the floor of the bathroom, unable to move.

For years, I didn’t talk about it. I didn’t want to be seen as weak. I wanted to be respected. I wanted to be strong. Little did I know then – the opposite was true!

The Turning Point: Finding Support and Choosing Myself

Watching my husband and children not know what to do as I screamed and cried in agony – that was the hardest part. But I will always be grateful for my husband’s unwavering support. He didn’t have the answers, but he held me. Those hugs meant everything. I was loved. I was supported. I was believed.

At 46, I met the first gynaecologist in 15 years who said yes to a full hysterectomy.

When he looked at my results and asked if I’d be okay with taking everything out – uterus, ovaries – the lot, I cried. He assumed they were tears of sadness, but they weren’t. They were tears of joy. Finally, someone was on my side.

After my hysterectomy, my gynaecologist advised against taking estrogen – it would accelerate the regrowth of endometriosis. My endocrinologist, on the other hand, warned that without estrogen, I risked developing osteoporosis.

Well, now I have both.

At 53, I am a mother, a wife, a businesswoman, and in menopause. And while I no longer experience the debilitating pain I once did, endometriosis is still part of my life.

What I Want You to Know

Endometriosis is more than just “bad periods.” It’s a disease that affects a person’s energy, mental health, physical well-being, and emotions. The impacts stretch into relationships, careers, and self-worth.

For those who doubt or dismiss it – please, just because you can’t see it doesn’t mean it’s not real. The next time you meet someone with endo, come from a space of compassion, not ignorance.

If you’re someone who suffers from endo, I see you. I believe you. And if you ever need someone to talk to – I’m here. Please reach out to nichol@nicholstark.com.au or https://nicholstark.com.au/contact-nichol-stark-coaching/

Sending love to those in the thick of it and to the beautiful souls who support them. ❤️