More Than a Month: Living With Endometriosis Beyond Awareness

March is National Endometriosis Awareness Month.

Every year, this month gives people living with endometriosis a platform to be seen, heard, and believed. Endometriosis affects an estimated 1 in 10 people born with a uterus worldwide (roughly 190 million people), yet it remains deeply misunderstood, underdiagnosed, and stigmatized. Endometriosis is a condition where tissue similar to the lining of the uterus grows elsewhere in the body causing inflammation, internal bleeding, scarring, and chronic pain.

For many people this month is a campaign. A color ribbon. A statistic.

For me, it’s a timeline.

The Pain Before the Language

Over twenty years ago, I began trying to explain a pain I didn’t yet have a language for. The kind of pain that makes your vision blur. The kind that folds you in half in public bathrooms. The kind that makes you memorise the locations of heating pads and exits. 

Over the past two decades, I’ve had six surgeries.

Each one came with hope.

Each one came with fear.

Each one came after fighting to be taken seriously. 

What people don’t always understand about endometriosis is that the physical pain is only one layer. The deeper wound, and the one that lingers, is what happens when you aren’t believed.

When a doctor suggests you’re exaggerating. 

When symptoms are minimized as “normal.”

When you’re prescribed anxiety medication instead of investigation.

When you leave appointments feeling smaller than when you walked in.

There were years I doubted myself more than I doubted the system. Years where I wondered if maybe I was too sensitive. Maybe this was just what having a uterus meant. Maybe I needed to tolerate more.

Chronic pain changes your relationship with time. You don’t plan in months, you plan in flares. You don’t trust your body, you negotiate with it. 

There were moments I grieved (and still grieve)  the body I thought I would have. The spontaneity I assumed would always be there. The ease of movement and fluidity, both physically and mentally. 

Visibility, Advocacy, and Being Believed

As a therapist, I now hold space for clients navigating these challenges, but I do so knowing what it feels like to be on the other side of the couch. Knowing what it feels like to brace. For pain, for rejection, for judgement. 

Recently, the short film This Is Endometriosis, by Georgie Wileman, won the BAFTA for Best Short Film. While watching it I felt something crack open in me. Not because awards solve systemic dismissal, but because someone told the truth and they told it publicly. Because the reality of scars, exhaustion, rage, and resilience was finally centered instead of sanitized. 

Visibility doesn’t erase pain, but invisibility compounds it. 

Endometriosis has shaped my body, my advocacy, and my boundaries. It has also taught me that pain deserves investigation, patients deserve to be believed, and suffering should never be normalized into silence. 

This month is about awareness. If you are living with this reality, we see you. If you are still fighting for a diagnosis, keep pushing. If you are exhausted, that makes sense. Your body is not dramatic, it’s communicating and it deserves to be heard.

If chronic pain has reshaped your life in ways that feel hard to name, we offer a space where your experience is taken seriously.

This Is Endometriosis is available to be viewed online (for free!) at the following link: https://vimeo.com/919495383?fl=pl&fe=sh