Endometriosis 101: What It Is, Why It Hurts, and Why Diagnosis Takes So Long (But the Future Looks is Optimistic)

If you’ve ever wondered why your period pain feels nothing like what others describe, or why you experience lingering discomfort long after menstruation has stopped; why your urination or defection may be abnormal, or you’re a chronic sufferer of pelvic pain, unpleasant digestive problems, joint and back pain, chronic fatigue, or even unexplained infertility — you are not imagining it and you are definitely not alone.

And while I can’t diagnose you through a blog, I can tell you this: if these symptoms feel familiar, it may be worth bringing them up with your ObGyn. Far too many women live with endometriosis (endo) for years without answers, partly because diagnosing it can be complicated and often takes much longer than it should (more on that later).

So today, I want to break it all down with clarity, compassion, and just enough humor to soften the edges — because if we don’t laugh, we’re going to start remembering all the times we functioned through a level-10 pain day and still apologized for being “dramatic.”

And, honestly… no thank you.

What Is Endometriosis? (The Basics, Minus the Jargon)

Endometriosis is a complex disease — one that confuses not only the people living with it but also the medical community researching it. It affects about 1 in 10 women (or roughly 390 million people globally), and yet the average wait time for a diagnosis is 7–10 years.

What’s actually happening?

Let’s start with the word itself. The suffix -osis means an abnormal condition.

In endometri-osis, cells that look and act like the lining of the uterus (the endometrium) start appearing outside the uterus — where they don’t belong. Over time, these cells can grow into endometriotic lesions. 

Now, let’s pause for a moment before I induce a panic attack over the word “lesions.” 

Because although they can invade other tissues and organs, endo-lesions are benign and do not behave like malignant tumors. Instead, they respond to hormonal changes during the menstrual cycle — which means they can swell, bleed, and trigger inflammation every month. That ongoing inflammation is what causes the disease itself.

Endo lesions (photo: Florida Center for Urogynecology)

Most commonly, these lesions show up on:

• the uterus

• ovaries

• fallopian tubes

• nearby pelvic tissues and organs

• 
  

But — and this is where endo gets even more confusing — in rare cases they’ve been found on the skin, lungs, heart, and even the brain. Curious how this happens? We break it all down in So… How Does Endometriosis Actually Happen? (soon to come!)

If It Can Appear Anywhere, Why Is Endo So Hard To Diagnose?

So it shows up everywhere, yet diagnosis feels like searching for a needle in a haystack. And unfortunately, there’s a history of barriers that have made timely diagnosis nearly impossible for many people.

Here’s Why:

1. High Prevalence, Low Research Investment

Even though roughly 1 in 10 women+ live with endo, research funding has lagged behind other conditions with similar prevalence. Limited studies mean we still don’t  fully understand early detection, predictive markers, or non-invasive ways to identify the disease.

2. Misogyny in Healthcare Slowed Progress

Historically, conditions affecting women+ have received less funding, less attention, and less urgency Symptoms like pelvic pain, fatigue, or digestive issues were often dismissed as typical menstrual discomfort — which you can see reflected in my in-depth endo symptoms guide here.

The result? That 7-10 diagnostic delay we discussed so many people with endo experience. 

3. Menstrual Blood Has Been Seriously Overlooked

Believe it or not, the very fluid driving the disease — menstrual blood — has been one of the least studied bodily fluids in medicine. For a condition so closely tied to the menstrual cycle, there hasn’t been much focus on examining it for early detection bio-markers. 

That means non-invasive tests that could help identify endo early simply haven’t existed… until recently. 

The Breakthrough We’ve Been Waiting For

Thankfully, things are starting to shift — and at a quick pace. Women researchers and innovative biotech teams are figuring out how to collect and analyze menstrual blood for inflammatory markers linked to endometriosis. Early studies look promising, and the future may open the door to real breakthroughs: faster, easier, and affordable non-invasive testing. And for the first time, early detection feels like a realistic possibility.