Understanding Endometriosis: Diagnosis and the Role of Surgery

A personal conversation for the woman searching for answers.

Let’s be honest: Most of us don’t find out about endometriosis from a pamphlet or a supportive conversation with a doctor. We find out about it in the middle of frustration, pain, and a lot of unanswered questions.

If you’re here reading this, it’s probably because you’ve been told you might have endo or you’ve been googling your symptoms, and the pieces are starting to fit. But now you’re wondering:

• How do I actually get diagnosed?

• Will someone finally take me seriously?

• Do I really need surgery just to know what’s going on?

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So let me walk you through it, not as a doctor, but as a woman who’s been through this maze. As well as an Endometriosis Coach who is supporting and fighting for more to be known about this disease.

This is not medical advice. This is me, talking to you like I wish someone had talked to me.

First: Why Is It So Hard to Get a Diagnosis of Endometriosis?

Because this condition is complicated. And honestly? The system isn’t built for us.

Endometriosis can’t usually be seen on a regular ultrasound, CT scan, or pelvic exam. Even if you’re in horrific pain, everything might “look normal” on paper.

That’s why so many of us are told:

“It’s just part of being a woman. “You might have IBS.” “Try the birth control pill and see how you feel.” “We can’t know for sure unless we go in and look.”

Years can go by like that... yes, YEARS. And that’s not okay!

So, How Is Endometriosis Diagnosed?

Here’s the truth: There is only one way to officially diagnose endometriosis, and that’s through laparoscopic surgery.

Let me break it down:

Step 1: Medical History & Symptom Review

Most providers will start by asking about your cycles, pain, sex life, bowel/bladder issues, etc. (If they don’t, find one who will.)

My advice: Write down your symptoms before the appointment. Get specific. How many days is your period? What does the pain feel like? When does it hit? You have to be your own data keeper.

Step 2: Imaging (but don’t rely on it)

They might order an ultrasound or MRI, but here’s the frustrating part:

• Most endometriosis doesn’t show up

• What they can sometimes see are endometriomas (ovarian cysts caused by endo), large fibroids, or abnormalities in how your organs are sitting

I once had a scan where everything looked “fine” — except I couldn’t stand up straight without wincing. That’s endo for you.

Step 3: Laparoscopy (the surgical diagnosis)

This is a minimally invasive surgery where they insert a tiny camera through your belly button to look inside your pelvis. If they find lesions, they may remove or biopsy them right then.

This is considered the gold standard of diagnosis. But that doesn’t mean it’s easy to say yes. Surgery is a big decision, especially when your pain hasn’t been validated.

Do You Need Surgery to Be Taken Seriously?

Here’s my personal take: HELL NO You don’t need a scalpel to legitimize your pain. But in the current system, you often need surgery to get answers, a formal diagnosis, and access to better treatment.

That’s the reality. And it’s not fair.

Some women choose surgery early to stop the guessing. Some wait and try medical management first. Some are misdiagnosed for years and go into surgery thinking it’s one thing only to wake up with a surgeon confirming, “Yep. Endo.”

There’s no right or wrong choice. There’s only what feels right for you, your body, and your life right now.

What Helped Me Decide?

When I was at the point of considering surgery, I asked myself:

• Have I tried other treatments and still feel like something’s wrong?

• Is my quality of life being destroyed by this pain?

• Do I want to rule other things out?

• Do I trust the provider performing the surgery?

• Am I doing this for answers or pressure?

And the biggest one: Am I making this choice from a place of empowerment, or from fear?

These are the same things I tell my clients to ask themselves as an Endometriosis Coach!

Getting to a diagnosis can feel like fighting for permission to be believed.

If you’re sitting in that space right now...unsure, scared, exhausted, I want you to know this:

You are not making this up. Your pain is real. Your intuition is valid. You are allowed to ask questions. You are allowed to get second (or third) opinions. And you are allowed to say “yes” to surgery or “not right now.”

You deserve answers. But more than that, you deserve support.