I Am Endometriosis. 💪💛
Big announcement for Endometriosis Awareness Month!
There’s something triggering to me about Endometriosis Awareness Month.
Not the disease itself… the word awareness. Because I keep asking myself… is it actually doing anything?
It doesn’t validate anything for me. If anything, this month just reminds me how far we still have to go for proper women’s healthcare - and how much harder women have to fight to have their pain taken seriously than men do.
The honest truth is that I’m angry.
I’m angry for myself.
For the countless days and weeks and months and years I’ve lost to this disease.
I’m angry for everyone who is told that painful periods are “normal.”
I’m angry for the 15-year-old girls in my DMs whose doctors and teachers don’t take them seriously.
I’m angry over insurance rhetoric and policies that don’t value the lives of women, mothers, or trans individuals.
And I’m angry at a system that will always prioritize money and capitalism over women’s health, often hiding behind the guise of religion, bureaucracy, or “lack of research.”
Because the reality is this: endometriosis affects about 1 in 10 people with a uterus. That’s nearly 200 million people worldwide.
And the average time to diagnosis is still 7–10 years.
Seven to ten years of pain.
Seven to ten years of being dismissed.
Seven to ten years of people being told nothing is wrong with them.
This week I learned that I also have PCOS and adenomyosis (after previously being incorrectly diagnosed with Hashimoto’s earlier this year). I’ve been trying to get answers for symptoms that couldn’t be explained by endometriosis alone for the last two years.
In that time I’ve been dismissed, bounced between doctors, changed insurance plans four times, had more procedures than I can count (including major surgery in November), and had to advocate for myself like my life depended on it… because in many ways it did.
I was told things like:
“Nothing is wrong with you.”
“You might have cancer, but I don’t know.”
“Have you tried drinking water and exercising?”
Even after living with endometriosis for 22 years, being taken seriously in the medical system still feels like a joke. And I know the only reason I eventually got answers is because I have resources, connections, and a partner who refuses to let me be gaslit by the system - privileges that so many others simply don’t have.
After 22 years of living with endometriosis (and the last two years of what I can only describe as truly diabolical medical gaslighting) I realized I couldn’t just keep talking about this.
I had to actually do something.
So I’ve teamed up with Savannah Regensburger, a clinical nutritionist and absolute badass in the women’s health space, and together we founded I Am Endometriosis.
I Am Endometriosis is an organization (and eventually a nonprofit) focused on mass education, advocacy, and policy change.
We want to help women, people with periods, and young girls understand their bodies and learn how to advocate for themselves in a system that makes that far harder than it should be.
We’ll also be working at the state level with policymakers to push for better protections around insurance coverage, endometriosis care, and access to treatment.
Because individually we are often overlooked. But together, we are impossible to ignore.
Every month we’ll launch what we’re calling The Group Project which is a way for this community to actually take action together.
Sometimes that will mean sharing stories.
Sometimes it will mean contributing to patient-led research.
Sometimes it will mean education, advocacy, or contacting legislators.
This movement isn’t just for people diagnosed with endometriosis. It’s for anyone who is tired of the way the system treats women.
Anyone who has painful periods with no answers.
Anyone in perimenopause who is constantly being dismissed.
Anyone watching their partner, daughter, sister, or friend struggle and feeling completely helpless.
Because this isn’t just a women’s issue.
It’s a healthcare issue.
This Month’s Group Project
1. Fill out our patient-led survey
We’re collecting real data from the people actually living with these conditions. This will help strengthen our case for policy change, shape future education, and guide how we use our resources moving forward.
👉 Click here to fill out the survey.
2. Share your story
Your story matters more than you know. Personal stories are often the most powerful tools for change, and we want to amplify them so they can’t be ignored.
👉 Click here to share your story.
If you’ve been here for a while, you know this journey has been a wild ride. And apparently I’m not getting off anytime soon. 🤪
I’ll share more about my PCOS diagnosis later this month, and why it was so incredibly difficult to get answers, even after decades of navigating the medical system.
But for now, I’m choosing to turn all of this anger into something useful.
Because if awareness hasn’t changed enough yet, then the next step has to be action.
And I hope you’ll be part of it.
The overlap with endo is the piece that keeps getting missed. Both conditions share insulin resistance and chronic low-grade inflammation as core drivers, and there's growing evidence the metabolic dysfunction in PCOS can accelerate endo progression through increased aromatase activity and estrogen production. But they're managed by completely different subspecialties so the shared pathophysiology almost never gets treated as one picture…
I had a similar experience. I had around 7 years of pain before my OBGYN would even mention a hysterectomy. He was so dismissive for years I went to another OBGYN and he did the surgery. Still, because I was "too young" and had no kids it took forever to get the hysterectomy I needed at age 38. No regrets 12 years later and never had that kind of pain ever again.