Breaking the Silence: Why Endometriosis Took So Long to Be Taken Seriously
—and What’s Finally Changing
For millions of women around the world, the story of endometriosis is one of pain,
dismissal, and delay. But after decades of silence, the tide is beginning to turn.
Breaking the Silence:
Why Endometriosis Took So Long to Be Taken Seriously
—and What’s Finally Changing
For millions of women around the world, the story of endometriosis is one of pain,
dismissal, and delay. But after decades of silence, the tide is beginning to turn.
What Is Endometriosis—and Why Has It Been Ignored for So Long
Endometriosis is a chronic, often painful condition where tissue similar to the lining of the uterus grows outside the uterus—on the ovaries, fallopian tubes, pelvic lining, and sometimes even beyond. This tissue responds to hormonal changes, leading to inflammation, scarring, and severe pain.
Despite affecting roughly 1 in 10 women of reproductive age worldwide, endometriosis has historically been misunderstood, underdiagnosed, and mistreated.
World Health Organization Fact Sheet on Endometriosis:
https://www.who.int/news-room/fact-sheets/detail/endometriosis
The Average Time to Diagnosis? Still Over 7 Years.
That’s not a typo. On average, it takes 7 to 10 years from the first symptoms to a correct diagnosis. Why?
• Symptoms are often normalized: Severe period pain? “Just part of being a woman.”
• Lack of non-invasive testing: Diagnosis has long relied on laparoscopic surgery.
• Medical gaps: Many healthcare providers, including OB-GYN’s, receive limited training in gynecologic pain conditions.
NIH: Delays in Endometriosis Diagnosis: https://pubmed.ncbi.nlm.nih.gov/32147966/
What Are the Symptoms of Endometriosis?
Every woman’s experience is different, but some of the most common symptoms include:
• Intense pelvic or abdominal pain
• Pain during or after sex
• Heavy or irregular periods
• Chronic fatigue
• Gastrointestinal issues like bloating, nausea, or constipation
• Infertility or difficulty conceiving
What’s Finally Changing?
Promising Breakthroughs (2024–2025)
New Diagnostic Tools
• MicroRNA panels and blood-based biomarkers are showing promise as non-invasive ways to detect endometriosis earlier.
• Advanced imaging like high-resolution MRI and ultrasound with specialized protocols are helping detect lesions more reliably.
Endometriosis Foundation: Emerging Research: https://www.endofound.org/news-research
PubMed: Biomarkers in Endometriosis: https://pubmed.ncbi.nlm.nih.gov/30807918/
AI & Machine Learning
Artificial intelligence is being trained to analyze symptom patterns, scan images, and even detect potential markers in menstrual blood—offering hope for faster, more accurate screening in the near future.
More Funding and Advocacy
• Governments and nonprofits are increasing research grants.
• Social media and support groups are amplifying women’s voices and experiences.
• Healthcare providers are receiving more training in pelvic pain and minimally invasive surgical options like excision surgery.
What This Means for You (or Someone You Love)
Faster, less invasive diagnosis is on the horizon.
Women are being believed and supported more than ever.
With better understanding comes more targeted treatment options, like hormonal therapies, dietary approaches, pelvic floor therapy, and expert excision surgery.
What You Can Do Right Now
1. Track your symptoms: Keep a daily journal of pain, mood, fatigue, and cycle details.
2. Advocate for yourself: Ask your doctor about excision surgery vs. ablation. A specialist is necessary for proper endometriosis care. Unfortunately, your typical OB-GYN is not an endometriosis or excision specialist.
3. Get support: You're not alone. Online communities and advocacy organizations offer connection and practical help.
Nancy’s Nook Endometriosis Education Group: https://www.facebook.com/groups/NancysNookEndoEd
Center for Endometriosis Care: https://www.centerforendo.com/
Why This Matters
Endometriosis is a whole-body disease that can affect a woman’s physical, emotional, and reproductive health. We are just starting to make some noise & bring attention to this disease and other hormonal diseases related to it.
“The future of women’s health is shifting—but only if we keep raising our voices.”
What Is Endometriosis—and Why Has It Been Ignored for So Long
Endometriosis is a chronic, often painful condition where tissue similar to the lining of the uterus grows outside the uterus—on the ovaries, fallopian tubes, pelvic lining, and sometimes even beyond. This tissue responds to hormonal changes, leading to inflammation, scarring, and severe pain.
Despite affecting roughly 1 in 10 women of reproductive age worldwide, endometriosis has historically been misunderstood, underdiagnosed, and mistreated.
World Health Organization Fact Sheet on Endometriosis:
https://www.who.int/news-room/fact-sheets/detail/endometriosis
The Average Time to Diagnosis? Still Over 7 Years.
That’s not a typo. On average, it takes 7 to 10 years from the first symptoms to a correct diagnosis. Why?
• Symptoms are often normalized: Severe period pain? “Just part of being a woman.”
• Lack of non-invasive testing: Diagnosis has long relied on laparoscopic surgery.
• Medical gaps: Many healthcare providers, including OB-GYN’s, receive limited training in gynecologic pain conditions.
NIH: Delays in Endometriosis Diagnosis: https://pubmed.ncbi.nlm.nih.gov/32147966/
What Are the Symptoms of Endometriosis?
Every woman’s experience is different, but some of the most common symptoms include:
• Intense pelvic or abdominal pain
• Pain during or after sex
• Heavy or irregular periods
• Chronic fatigue
• Gastrointestinal issues like bloating, nausea, or constipation
• Infertility or difficulty conceiving
What’s Finally Changing?
Promising Breakthroughs (2024–2025)
New Diagnostic Tools
• MicroRNA panels and blood-based biomarkers are showing promise as non-invasive ways to detect endometriosis earlier.
• Advanced imaging like high-resolution MRI and ultrasound with specialized protocols are helping detect lesions more reliably.
Endometriosis Foundation: Emerging Research: https://www.endofound.org/news-research
PubMed: Biomarkers in Endometriosis: https://pubmed.ncbi.nlm.nih.gov/30807918/
AI & Machine Learning
Artificial intelligence is being trained to analyze symptom patterns, scan images, and even detect potential markers in menstrual blood—offering hope for faster, more accurate screening in the near future.
More Funding and Advocacy
• Governments and nonprofits are increasing research grants.
• Social media and support groups are amplifying women’s voices and experiences.
• Healthcare providers are receiving more training in pelvic pain and minimally invasive surgical options like excision surgery.
What This Means for You (or Someone You Love)
Faster, less invasive diagnosis is on the horizon.
Women are being believed and supported more than ever.
With better understanding comes more targeted treatment options, like hormonal therapies, dietary approaches, pelvic floor therapy, and expert excision surgery.
What You Can Do Right Now
1. Track your symptoms: Keep a daily journal of pain, mood, fatigue, and cycle details.
2. Advocate for yourself: Ask your doctor about excision surgery vs. ablation. A specialist is necessary for proper endometriosis care. Unfortunately, your typical OB-GYN is not an endometriosis or excision specialist.
3. Get support: You're not alone. Online communities and advocacy organizations offer connection and practical help.
Nancy’s Nook Endometriosis Education Group: https://www.facebook.com/groups/NancysNookEndoEd
Center for Endometriosis Care: https://www.centerforendo.com/
Why This Matters
Endometriosis is a whole-body disease that can affect a woman’s physical, emotional, and reproductive health. We are just starting to make some noise & bring attention to this disease and other hormonal diseases related to it.
“The future of women’s health is shifting—but only if we keep raising our voices.”
Join Us: Make a Difference Today
Your support can transform lives. Every donation helps us fund research, advocate for better care, and provide essential grants to women facing debilitating conditions.
Join Us: Make a Difference Today
Your support can transform lives. Every donation helps us fund research, advocate for better care, and provide essential grants to women facing debilitating conditions.
Endometriosis Featured on The Today Show
This story ran on The Today Show on NBC (8/4/25).
We love seeing more attention being given to Endometriosis! We love that more women are standing up and telling their stories!
The stories from one woman to the next vary so much...
Some women (like the one featured in the Today Show segment) have full relief after one excision surgery. Others have endometriosis lesions that repeatedly grow back and they are subjected to several surgeries over their lifetime. Some women have excruciating pain with their cycles, others have it every day throughout the month, and others have very little pain but suffer with "unexplained" health issues or infertility. We need more research and more awareness of this disease. And the medical gaslighting needs to stop. Thank you for speaking up and telling your story!
