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.
My Story: Caitlin
Caitlin bravely shares her story in hopes to support, encourage and inspire other women who have suffered with delayed diagnosis, multiple surgeries (excision and hysterectomy), many treatments and ma... ...more
Personal Stories
August 21, 2025•3 min read
Why Menopause Does Not Treat Endometriosis
Whether its natural menopause, drug induced menopause by hormonal treatments, surgical menopause through hysterectomy and ovary removal...endo can still grow. This blog post from Athens Centre for End... ...more
Endometriosis
August 21, 2025•3 min read
How Does Endometriosis Cause Leg Pain
Endometriosis is a full body systemic disease that can affect the entire body. Leg pain with endo is not uncommon & can exist for a variety of reasons. The blog post was written by The Washington Endo... ...more
Endometriosis
August 13, 2025•3 min read
My Story: Allison
Thank you to Allie for sharing her story of resilience & hope! All of us have a story to tell and it makes a difference as we raise our voices. ...more
Personal Stories
August 13, 2025•3 min read
Follow the Money: We Can Do Better
The Gates Foundation just pledged $2.5 billion toward women’s health initiatives. But reading the accompanying article published in STAT points to the facts that the statistics for spending on R&D in ... ...more
Breaking News
August 08, 2025•5 min read
Endometriosis Featured on The Today Show
We are thrilled to see Endometriosis featured on the Today Show. Decades of pain before a diagnosis is typical. We need more research so that women do not need to suffer for so long. ...more
Endometriosis
August 06, 2025•1 min read