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: Lisa Tierney-Keogh
Personal Stories: “I’ve Been Branded a Hypochondriac So Many Times”
In a powerful piece published by The Irish Times on July 13, 2025, writer Lisa Tierney-Keogh shares the raw truth of living with endometriosis—a disease that affects an estimated 1 in 10 women. But for Lisa, the real pain wasn’t just the physical suffering—it was the decades-long silence, disbelief, and dismissal by the healthcare system.
“With all the health problems I’ve endured since childhood, I’ve been branded a hypochondriac so many times… I was gaslit into believing that my body was fine—but that I, Lisa, was the problem.”
Lisa describes how, despite agonizing symptoms—pain that radiated to her back, legs, shoulders, and even her diaphragm—she spent nearly 30 years without a diagnosis. Even after her first surgery, she was told “there was just one spot” of endometriosis. But the pain came back worse than ever.
“I couldn’t walk more than 15 minutes. I couldn’t sleep. I was told by one doctor that I ‘think I’m in constant pain.’ That’s when I knew I was in trouble.”
Her story is not unique. For many women, that diagnosis delay comes with job loss, infertility, financial strain, and psychological trauma. This story is about Lisa's experience in Ireland, but this story is common in every country including the US. Average times for diagnosis are very similar in the US, and we still do not have excision specialists in every state. Treatment also can come with a very high price tag because often insurance does not cover the costs of surgery or treatments like Pelvic Floor PT that are shown to give some relief.
A quick summary of Lisa's story:
1. A Burden Hidden in Plain Sight
Endometriosis affects about 1 in 10 Women individuals globally—and many suspect it’s even more common—yet in Ireland the average diagnosis delay is 8–10 years. The author, Lisa Tierney‑Keogh, waited an astonishing 28 years for confirmation
The NHS classifies it among the top 20 most painful conditions, yet research funding and clinical resources remain deeply inadequate
2. A Life of Unbearable Pain—And Distrust
Symptoms extend far beyond pelvic cramps: they include “leg and back pain, shoulder pain, fertility issues, painful bowel issues, headaches, brain fog, chronic fatigue, shortness of breath…”
As a child and teen, Lisa was repeatedly dismissed:
“With all the health problems I've endured since childhood, I've been branded a hypochondriac so many times, been gaslit into believing…my body was fine, but I, Lisa, was the problem.”
3. Diagnosis and the Broken System
The path to diagnosis is nearly always surgical (laparoscopy), but Ireland’s system is crippled by understaffed clinics and long OR waitlists
Even when undergoing surgery in early 2020, Lisa was told only “one spot of endometriosis” was found and ablated—but the disease returned with a vengeance
4. Pain Ignored—or Gaslit
After surgery, Lisa's pain intensified drastically. She couldn’t walk more than 15 minutes or sleep through the night, yet medical communication described her as thinking she’s in constant pain
“When I’m cc’d on a letter that includes the sentence, ‘She thinks she’s in constant pain,’ I realise I’m in trouble.”
— Lisa Tierney‑Keogh
Read Lisa's full story from the Irish Times by clicking the link below:
“Life with endometriosis: I've been branded a hypochondriac so many times” – The Irish Times
