The Pain I Thought Was Normal: An Endometriosis Physiotherapist's Story
By: Jill Mueller, PT∙ Estimated reading time: 4 minutes

From Endometriosis Patient to Endometriosis Educator

Even my dad, who was a doctor, told me "Period pain is normal”, when I was growing up.

So I never questioned it.

I went to school.

I went to work.

I took medication.

I kept functioning.

Because that's what I thought women did.

What I didn't realize was that the pain I was pushing through wasn't normal at all.

My period pain felt like labour pain.

Years later, when I gave birth, I chose to do it without pain medication. In large, because I wanted to know if contractions were really worse than my periods.

The truth?

They felt remarkably similar.

Yet for years I believed that level of pain was simply part of being a woman every month.

Looking back now, I can see how deeply that belief shaped my life.

I became very good at ignoring my body.

I was the classic overachiever. The perfectionist. The person who pushed through no matter what.

Unfortunately, that mindset followed me into a ten-year fertility journey that would become one of the most emotionally difficult experiences of my life.

There were moments of incredible hope.

Positive pregnancy tests.

Dreams about the future.

Moments when it felt like everything was finally working out.

And then there were losses.

Five to seven pregnancies that ended before we got to bring a baby home.

The emotional roller coaster felt endless.

Hope.
Grief.
Anxiety.
Disappointment.
Waiting.
Resentment.
Frustration.

As a woman, I carried the physical burden of fertility treatments, appointments, procedures, bloodwork, and examinations. While my husband was deeply affected too, there were times I felt resentful that so much of the physical process fell on me.

The Diagnosis That Didn't Change the Pain

At one point, I was diagnosed with endometriosis and underwent surgery.

This was before social media.

Before support groups.

Before Google and AI could answer any question.

I didn't know what to expect.

I simply hoped it would help.

Years later I would learn that the surgery performed was ablation rather than excision.

At the time, I didn't know the difference.

What I did know was that my pain didn't change.

And I still didn't carry a pregnancy to the end for another four years.

Like many women with endometriosis, I believed the pain was coming from the disease itself.

The lesions.
The inflammation.
The tissue.

End of story.

Then something unexpected happened.

As a pelvic health physiotherapist, I attended a pain science course intended to help me better treat my patients.
I had no idea that I was about to become one of the patients.

The course introduced questionnaires designed to identify pain system sensitivity.

As we learned how to administer them, I filled them out myself.

My scores came back high.

I remember sitting in a room with forty other pelvic health professionals staring at my results thinking:

"Oh my God. I'm somebody living with chronic pain."

I was shocked.

I had simply become so good at pushing through my pain that I didn't recognize what was happening.

I didn't fit the image I had in my head of someone living with chronic pain. I didn’t realise chronic pain could be an invisible and dynamic disability.

I was working.
Functioning.
Building a career.
Showing up.

But underneath that functioning was a nervous system that had been working overtime for years.

That day changed everything.

For the first time, I learned that endometriosis was only one piece of the puzzle.

The disease mattered.
Inflammation mattered.
Tissue mattered.

But pain was bigger than that.

Pain is influenced by our nervous system, our experiences, our beliefs, our emotions, our stress, our environment, our memories, and the body's ongoing assessment of whether we are safe or in danger.

For me, that realization created something I hadn't felt in years:
Hope.

Because if pain wasn't solely determined by the disease itself, then maybe there were things I could do to influence it.

Maybe I wasn't stuck.
Maybe I wasn't broken.
Maybe things could change.

And they did.

I started applying the same pain neuroscience and nervous system strategies that I was teaching professionally.

I began learning how to listen to my body instead of fighting it.

I gave myself permission to slow down.

That sounds simple, but for a perfectionist who had spent a lifetime pushing through pain, it was one of the hardest things I had to learn.

Over time, my relationship with pain changed.

My symptoms changed.
My life changed.

I stopped planning my life around my cycle.
I stopped wondering whether I would be able to attend social events.
I stopped cancelling plans with friends and family.

I could exercise whenever I wanted.
I could travel without calculating where I would be in my menstrual cycle.

I got pieces of my life back that I didn't even realize I had lost.

Perhaps most importantly, it completely changed how I practiced as a physiotherapist.

Before pain science, I treated the disease.

I treated pelvic floor tension.
I treated mobility restrictions.
I treated the physical findings.

Today, I treat the person who has the disease.

I look at the whole picture.

The body.
The nervous system.
The emotions.
The stress.
The life circumstances.
The habits.
The beliefs.
The goals.

Because two people can have the same diagnosis and very different experiences.
And understanding why is where healing often begins.

The thing I wish I had known sooner was this:

There are things we can do to change our pain and symptoms.

Not because the pain is imaginary.
Not because it's "all in your head."

But because the nervous system is adaptable.

It is constantly learning.
And it can relearn safety.

That realization became the foundation for everything I do today.

It's why I created EndoTogether, and teach practitioners worldwide about this disease and how to use a biopsychosocial approach.

It's why I became a founding member of our Virtual Interdisciplinary Endometriosis360 program.

Because I know life can change for people living with endometriosis.

I've lived it.

I want people to know that this disease does not have to dictate every decision they make.

I want them to feel understood.
I want them to feel validated.

But most of all, I want them to feel hopeful.

Just because pain is common doesn't mean it's normal.

And just because you've had pain for years doesn't mean things can't change.

This post was written by Jill Mueller and you can find her at:

www.endotogether.com        
@endotogether
www.endometriosis360.ca        
@endometriosis360
www.hbpw.ca            
@oakvillephysio

 

Related Learning

You can also find Jill's online courses and resources on Embodia:

• The 10% Club: Endometriosis Matters in Low Back Pain
• An Update on Endometriosis from the World Congress in Edinburgh
• Using Somatic Exercises in Physiotherapy and Rehab Practice
• Read: Endometriosis in Clinical Practice