Getting the Better of Endometriosis

Getting the Better of Endometriosis Educating, advocating, and connecting policy, research, and patient voices to transform endometriosis care.

GIVEAWAY 💛 almost a $100 value!We raised $71 for American End of Endo Project during the birthday bracelet fundraiser i...
06/15/2026

GIVEAWAY 💛 almost a $100 value!

We raised $71 for American End of Endo Project during the birthday bracelet fundraiser in May! One of you bought an extra bracelet to give back to the community, so we're doing exactly that!

One person wins this whole self-care basket!
⬇️⬇️⬇️⬇️⬇️⬇️⬇️
🌙 "End of Endo Era" bracelet + beaded keychain
💜 BOND hormone support supplements
🌿 Soothe essential oil roll-on
💗 Claw hairclips
🫁 GIANTmicrobes lung plushie to represent full body impacts (thoracic endo fam, this one's for you)
🎟️ FREE ticket AND all access to Tuesday's advocacy workshop WITH workbook, June 16th

To enter:
1. Follow Getting the Better of Endometriosis AND American End of Endo Project
2. Like and share this post (tag us)
3. Tag your friends who just get it

Winner drawn Monday night. 💛
LET'S CONNECT ✨️

We're passing the mic 🎤🗣🎗💝Join us Tuesday, June 16th for a live online advocacy workshop. We'll cover how to talk to you...
06/13/2026

We're passing the mic 🎤🗣🎗💝

Join us Tuesday, June 16th for a live online advocacy workshop. We'll cover how to talk to your legislators, how to share your story in ways that create real change, and how to turn frustration into action!

This year, American End of Endo Project helped secure the first-ever federal language recognizing endometriosis as a chronic, systemic disease. That didn't happen by accident. It happened because patients learned how to show up over the past 30 years!

Patient, parent, partner, friends, researchers and even doctors...... whether you've been in this fight for years or you're just getting started, there's a seat for you.

🔗 Link below to register
https://givebutter.com/endometriosis-advocacy-workshop-copy-ws6uhu

💛 Want to sponsor a ticket for someone who can't afford one? That option's there too!

We are all in this together 🫶

06/13/2026

Watching people from all over the world come together to support one sport isn’t only inspiring, it’s motivating. As advocates for Endometriosis our ONLY goal is to get people from all over the world to join our team in this fight against disease and all the obstacles that come with it.

Put it this way - if Endometriosis was as popular as the World Cup, millions of women wouldn’t be suffering at the rate they currently are, every second of every day.

You can support our team by purchasing this soccer inspired jersey, or other types of sports merch! The funds will go directly to supporting our mission to end endometriosis! Use the link in our link tree to order! ⚽️🥅💛

06/11/2026

Ablation vs Excision? Let me explain it while I pull weeds. 🌱

Ablation burns the top of the lesion. It looks gone, but the roots are still there.

Excision cuts deeper, removing the disease from beneath the surface, roots and all.

This matters because:
🌿 Ablation is still the "standard" in most gynecology care, despite leaving disease behind
🌿 Excision requires specialized training most general gynecologists don't have, and is the GOLD standard that gets ignored
🌿 Many patients go through multiple failed surgeries before finding someone trained in precise excision techniques
🌿 Endometriosis can be harder to remove than cancer, and excision is technically more difficult than IVF treatment

The tool (laser, heat, scissors) matters less than HOW it's used. Precision is everything!!

If you're being scheduled for surgery, ask.....
Are you using ablation or excision techniques? Are you trained in FMIGS? Will you be preserving tissue for pathology and removing all visible disease? Whats the most extensive case you have ever had?

You deserve to know what's happening inside your body.

Surgery is currently the only way to definitively diagnose endometriosis AND one of the primary treatment options for the disease itself. Make sure you know what you're getting before you go under.

Education matters. Precision matters. You matter. 💛

06/10/2026

Package day! ✨

As someone whose body can go from "looking normal" to "where did that bloat come from" in a matter of hours, I'm always looking for support. But I am pretty cautious about trying compression wear.

has been a brand that has surprised me! I have been eager to try out their JellieShorts, and today was the day!

Comfortable, supportive, stayed in place, and didn't make me feel squeezed into oblivion. They moved with me instead of fighting me. This is definitely an upgrade from their general band. It gets right into my hips and pelvis where the support is much more needed.

If you deal with bloating, pelvic pain, endometriosis, abdominal pressure, prolpases or just want a little extra support, these are definitely worth checking out!

I can't wait to wear these more! 🤩

06/09/2026

A car accident has a way of forcing you to pay attention to things you've been pushing through.

After years of managing chronic back pain, spinal cord stimulators, thoracic disc issues, lumbar pain, and a traunatic history that started long before moving to Colorado and this accident, today's appointment felt like a fresh set of eyes on the situation.

The good news? I felt heard.

We reviewed my history, discussed the recent increase in symptoms that started before and after the accident, and then made a plan. Steroids, muscle relaxers, physical therapy, and most importantly, updated MRIs to reassess what's happening from my thoracic spine down through my lumbar spine.

For now, we're gathering information and taking things one step at a time.

After years of hearing "just adjust your stimulator," it feels, right, to finally be investigating the bigger picture again on my back.

06/09/2026

Wanna affect real change?
Wanna help change the course of the future?
Next advocacy workshop is Tuesday June 16 at 4:30PST on Zoom- link in bio 💛
($45 suggested donation to cover materials but contact us if you need support)
Wanna sponsor a participant? You can do that at the link, too!
Let’s go!!!

"Endometriosis wouldn't exist without a uterus."-Sidney Cole, a twitch gamer who has since blocked me on ALL medias for ...
06/06/2026

"Endometriosis wouldn't exist without a uterus."
-Sidney Cole, a twitch gamer who has since blocked me on ALL medias for clarifying her recent statements about endometriosis. I actually asked to connect and chat about the things less talked about. This was how I treated and then silenced.

Sidney, care to explain the documented cases in men? The documented cases in fetuses? The documented cases in animals without the same reproductive processes?!

Or how about explain why endometriosis lesions produce their own estrogen, create their own nerve pathways, recruit their own blood supply, and behave differently than normal endometrial tissue?

I wasn't arguing, queen. I was providing evidence and context thats missing in every discussions and presentations of this disease.

What is frustrating is that this exchange represents a larger problem in endometriosis advocacy and medicine. The moment evidence challenges an outdated belief, some people stop engaging with the science and start attacking the person presenting it. 🤷‍♀️

For the record, I am a research assistant and patient advocate. Much of my recent work has focused on documented evidence that falls outside traditional endometriosis narratives, including cases in men, children, fetuses, animals, and research surrounding endometriosis-related mortality. ✊️

I have worked alongside specialists, researchers, and advocates who understand that science evolves when evidence is followed, not when evidence is ignored.

Nobody is taking anything away from women by acknowledging documented cases that don't fit older theories. ‼️

🗣Women's suffering is real.
🗣Medical misogyny is real.
🗣Delayed diagnosis is real.
🗣The dismissal of women's pain is real.

But so are the documented cases that challenge what we thought we knew. ✨️

Science is not threatened by questions!

Science advances because of them.

Instead of addressing the evidence presented, I was called names and blocked.

That says more about the state of this conversation than anything I could.

One of the biggest medical blind spots in history has been assuming we already know everything there is to know about endometriosis.

The evidence says otherwise.

06/04/2026

Tonight I had the incredible opportunity to take the stage at .study at the Denver Press Club and asked a simple question....

"What if everything we thought we knew about endometriosis was wrong?"

For about an hour, we explored the science, the stories, the blind spots, and the assumptions that continue to shape how endometriosis is understood, researched, and diagnosed.




What meant the most wasn't standing at the podium, it was the conversations that followed. The questions. The curiosity. The willingness to challenge long-held beliefs and consider a broader picture.

Thank you to everyone who attended, participated, shared your experiences, and helped make the evening so meaningful. Community, education, and conversation are where change begins.

And yes... the uterus and friends made an appearance. 💛

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Lancaster, OH

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