When No One Listens: The Silent Grief of Living with Endometriosis
I’ve sat in countless doctor’s offices, hands folded tightly in my lap, rehearsing my words like lines from a script. I’ve described my symptoms clearly, calmly, even with a hint of optimism—hoping this time would be different. That this provider would hear me. Believe me. Offer help.
But more often than not, I walked out of those rooms feeling smaller than when I walked in. Not because of the pain in my body—but because of the silence that followed my words. The polite nods. The rushed responses. The patronizing suggestions. The feeling that I was speaking into a void.
This is what so many of us with endometriosis experience: the ache of not being heard.
And when your symptoms are dismissed again and again, it does something to you. It begins to shape how you see yourself. How you trust yourself. How you move through the world.
But here’s what I want you to know: You can take your voice back. You can learn to advocate for yourself, even in a system that doesn’t always make space for you.
This blog post is not just about what’s wrong. It’s about what you can do. What I’ve done. What so many of us are doing to reclaim power in rooms where it was once lost.
The Trauma of Not Being Heard
When we talk about medical trauma, we often think of botched surgeries or intense ER visits. But chronic dismissal is a trauma too. Being told “it’s just stress” when you’re living with debilitating pain creates long-lasting emotional wounds. It creates self-doubt. It triggers shame.
And eventually, many of us stop speaking up altogether—not because we’re passive, but because we’re exhausted.
But silence doesn’t serve us. Silence may protect us in the moment, but it robs us of the care we deserve.
The system might be slow to change—but we don’t have to be.
How I Began to Reclaim My Voice
My turning point came after a series of appointments where I left in tears. I realized I needed a new approach—one that protected both my emotional well-being and my physical health.
Here’s what changed:
I stopped trying to be the “perfect patient.” I used to think that if I was agreeable and concise, I’d be taken seriously. But being agreeable didn’t help me. Being honest did.
I created a “medical narrative.” I wrote out my full symptom history, triggers, past tests, and treatments in one clear document. I brought it to every appointment. If a provider cut me off, I handed it over. It was hard at first, but it worked.
I began interviewing doctors—rather than hoping to impress them. This was a mindset shift. I asked, “How do you typically treat patients with endo?” “Are you comfortable managing complex pain?” “How familiar are you with excision surgery?” Their answers told me everything.
Three Actionable Ways to Advocate for Yourself
These tools aren’t magic fixes. But they give you language, presence, and structure in rooms that often feel chaotic.
1. Bring a Support Person (and Prep Them)
Even if they don’t talk, having someone there can shift the power dynamic. But don’t just bring them—prepare them. Have them jot down notes. If you're getting emotional, they can help redirect or clarify. You deserve witnesses.
2. Use Anchoring Phrases
Sometimes, advocacy comes down to calm repetition. Try phrases like:
“I’m not here for pain management. I’m here for diagnosis and a treatment plan.”
“Let me finish my thought before we move on.”
“That hasn’t worked in the past. I’d like to explore other options.”
These phrases create clarity—and create a boundary around your care.
3. Track Your Appointments Like a Journalist
After every visit, write down what was said, what tests were ordered, and how you felt about the exchange. Over time, you’ll notice patterns—helpful ones and harmful ones. This becomes a powerful tool in both navigating care and rebuilding trust with your own instincts.
What to Do If You’re Being Gaslit
Medical gaslighting is real—and if it’s happening to you, I want you to hear this clearly: it’s not your fault.
If a provider tells you “everyone gets cramps,” or suggests anxiety meds without hearing you out, or acts annoyed by your questions—you’re allowed to leave. You’re allowed to find someone else.
There are good doctors out there. Compassionate ones. Skilled ones. You may have to look longer than is fair—but they exist.
And while you're searching, don’t internalize the dismissal. It doesn't belong to you.
The Emotional Healing That Comes With Being Heard
I’ll never forget the moment a nurse practitioner looked me in the eye and said, “I believe you.” It was simple. And it changed something in me.
Validation is medicine. It softens the fight. It reminds your body that it’s safe to speak.
Sometimes healing doesn’t start with a procedure. Sometimes it starts with a sentence.
If you haven’t heard that sentence yet, let me say it now:
I believe you.
Final Thoughts
Advocating for yourself can be draining. But it is also brave. And every time you do it—even shakily—you’re rewriting a system that wasn’t built for us. You’re not just advocating for yourself. You’re carving a path for the women who will come after you.
You may not feel strong right now. But you are. You’re doing the brave thing—the hard thing—of speaking up in a world that has asked you to be quiet.
And that, my friend, is the beginning of everything.
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You deserve care that listens. You deserve care that helps. You deserve care that sees the whole of who you are.
—Tiffany
PS: I have a monthly women’s endometriosis support group that meets once per month. If you’re looking for community and guidance on your healing journey, please check us out here, and I’d be so happy if you’d join us.