Endometriosis Foundation of America (EndoFound)

🎙️ New episode just dropped: *Living With Endometriosis: The Diet, Fatigue & Flare Reality Nobody Talks About* “I truly felt like I was dying — and every doctor kept telling me everything was normal.” This isn’t a conversation about quick fixes or miracle diets. It’s about what life with endometriosis can actually look like… and the tools, understanding, and validation that can help make the journey less isolating. After a 12-year diagnostic delay, clinical nutritionist and endometriosis patient Savannah Regensberger joins @dianafalzone for an honest conversation about the parts of endometriosis that often happen quietly: debilitating fatigue, brain fog, gut issues, fertility struggles, inflammation, and the unpredictability of flares. Listen now wherever you stream your podcasts — Spotify, Apple Podcasts, and more. open.spotify.com/episode/3gmFHn… #endometriosis #lifewithendometriosis #hope

For many in the endo community, hearing the word “#endometriosis” included in a national conversation around women’s health is meaningful. Progress in this field has never happened overnight.

Many patients also live with overlapping conditions such as #endometriosis and PMOS, navigating interconnected hormonal, inflammatory, and metabolic challenges that deserve more comprehensive study and care. This shift represents progress (and hope) that women’s health is finally moving toward a more accurate, research-driven understanding of complex gynecologic diseases.

BREAKING: PCOS has officially been renamed PMOS — polyendocrine metabolic ovarian syndrome — a change that reflects a growing recognition that these diseases are far more complex and systemic than previously understood. For the women’s health community, terminology matters. The way diseases are defined shapes research priorities, diagnosis, treatment development, and ultimately patient care. The endometriosis community knows this reality all too well, as millions continue to face delayed diagnosis and misunderstanding despite the full-body impact of the disease. #pcos #pmos #womenshealth

Tomorrow: join us for @NIH’s Fourth Annual Gynecologic Pain Research Virtual Meeting from 12–5 p.m. ET. EndoFound co-founder @DrSeckin and EndoFound ambassador @dianafalzone will be among the speakers and advocates helping advance important conversations around gynecologic pain research, patient care, and innovation. This free virtual meeting will bring together researchers, clinicians, and patients to discuss emerging trends and critical topics including endometriosis-associated pain, chronic pelvic pain, fibroid-associated pain, vulvar pain, menstrual pain, AI and machine learning in treatment, rehabilitation, and more. Registration is FREE: nichd.nih.gov/about/meetings… #endometriosis #pelvicpain #womenshealthmatters

“Endometriosis stripped me of my childhood.” Victoria was diagnosed at 14. What followed were years of pain, missed milestones, multiple surgeries, and being told to manage symptoms rather than treat the disease. After years of searching for answers, excision surgery changed the course of her life. Her story is one of persistence, healing, and the power of finally being heard. Today, Victoria is using her voice so others feel less alone and to emphasize that #endometriosis is never “just a bad period.” Read Victoria’s full story: endofound.org/honoring-what-…

There are moments in medicine that stay with you. After surgery, I asked Olivia: “How did you live like this?” For years, she had normalized and minimized her pain—and feared we might not find anything at all. When pain is dismissed long enough, it becomes internalized.

A new chapter starts now. Introducing EndoFound’s EndoTV, now available as a podcast—a digital health network dedicated to endometriosis research, diagnosis, treatment, policy, and patient stories. Executive produced & hosted by @dianafalzone, EndoTV brings together conversations with clinicians, researchers, advocates, lawmakers, and patients working to shape the future of endometriosis care. With conversations featuring #ElsieHewitt, Alexis Roderick Joel, @lesliemosier, and Dr. Danielle Luciano, EndoTV spotlights the voices, expertise, and lived experiences shaping the future of endometriosis care. Listen now on Spotify, Apple Podcasts, and wherever you get your podcasts. open.spotify.com/show/3vO9pDda3…

@viperdemie Wow! We are so so grateful for the support 💛

we've raised 11k so far for Endometriosis Funding.. please stop by today if you can. thank you everyone 🩶

Endometriosis Foundation of America charity stream ˚‧｡⋆🌼⋆｡‧˚ twitch.tv/viperous

May is #WomensHealthMonth, and @TerriIrwin reminded us that the race to change #endometriosis care is not a sprint, it’s a relay. At the 2024 EndoFound Blossom Ball, as we honored @BindiIrwin for her advocacy, Terri spoke to something every person in this community understands: real progress takes ALL of us. Research. Education. Earlier diagnosis. Better treatment. Stronger advocacy. Each step moves us closer to meaningful change. Share this to help carry the baton forward.

This Women’s Health Month, we’re calling for more. More research, more education, earlier diagnosis, and a standard of care that reflects the reality of women’s bodies. Share this to help move the conversation forward. 💛 #womenshealth #womenshealthmonth #endometriosis #womenshealthmatters #endometriosisawareness

This isn’t just about awareness. It’s about accountability. Because when women are listened to, believed, and properly studied, outcomes change.

Women’s health is not a niche issue, it’s the foundation of public health. And yet, across nearly every condition, the same patterns persist: delayed diagnoses, dismissed pain, and critical gaps in research that shape how care is delivered. From endometriosis to heart disease, infertility to autoimmune conditions, the data is clear. Women are living longer, but not necessarily healthier.

@IndieArtemis We really appreciate the support 💛

This Saturday May 2nd at 6:30PM EST. I'm doing a collab with a bunch of small VTubing women and non-binary folks to kick off a month long charity drive for women's health month! It'll be to support the Endometriosis Foundation of America.

@viperdemie @tiltify Thank you so much for the support 💛

Endometriosis Foundation of America Charity stream today with @tiltify 🎗️💛 24 hours - come support if you can.