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.

© Our Daughters Foundation - All Rights Reserved

Our Daughters

Follow the Money: We Can Do Better

August 08, 20255 min read

Our Daughters

I want to start by saying: this post is not political. This post is about our shared experiences as women—as a mother of three daughters, a grandmother, and a friend to countless women who have been frustrated and overwhelmed by the current state of our medical system.

We have a common experience—and it needs to be heard and shared.

I was encouraged to write this after reading that the Gates Foundation just pledged $2.5 billion toward women’s health initiatives. But reading the accompanying article published in STAT left me deeply frustrated. The statistics on women’s health haven’t improved enough.

“The Gates Foundation said the goal of the new initiative is to address a long-running deficit in medicine that has disfavored women’s health—to the extent that the ‘typical’ patient described to medical students has traditionally been male.”
— STAT News

In a BMJ article published last week, Ru Cheng, the foundation’s Director of Women’s Health Initiatives, shared that only 1% of global research and development funding is allocated to women’s health issues outside of oncology, and between 2013 and 2023, only 8.8% of NIH-funded research focused exclusively on women.

These are not opinions. These are widely reported, peer-reviewed statistics from respected medical journals. And this is why women with Endometriosis or Adenomyosis are subjected to 8-10 years of medical gaslighting before they are diagnosed. And this is why women with these diseases literally need to be cut open in order to diagnose their disease. It's just not acceptable that laparoscopic surgery is required for diagnosis in 2025. We should be much further along by now. Do you realize that most endometriosis lesions cannot be detected on scans or imaging? I know this can be figured out! Progress is being made, let's push it along.

Men’s and women’s health issues are not treated with the same urgency or investment. That’s not a radical feminist opinion or a political talking point—it’s a follow-the-dollars reality.

The gaslighting women experience around this issue doesn’t just come from doctors. I’ve had people close to me—both men and women—try to argue that women’s health isn’t being overlooked, that maybe we’re exaggerating. But the data is undeniable.

If our mothers, daughters, grandmothers, aunts, and female friends matter—if we believe them and value their lives—then it’s time to stop dismissing their pain. It’s time to pay attention to the statistics, follow the funding, and change our course.

That’s why we launched Our Daughters Foundation:
To fight for
awareness, raise money for research, and provide visibility and hope.

When we first started on this path of setting up the foundation, I was shocked to learn that women weren’t even included in NIH-funded medical trials until 1993. That wasn’t so long ago. If you’re close to my age, that year probably feels recent (Jurassic Park was in theaters and Bill Clinton was president). Incredibly, only 1% of non-cancer healthcare R&D currently targets female-specific conditions.

The Gates initiative is a huge step—but it’s not enough.

Women are still underrepresented in studies involving pain management, cardiovascular disease, and autoimmune conditions—fields where female biology plays a huge role in how we experience disease and respond to treatment. Even more disturbing is the lack of research funding for diseases that exclusively affect women, like endometriosis, adenomyosis, PCOS, and uterine fibroids. These are not rare diseases and conditions, and for many women, they’re life-altering.

For Those Suffering Now...and Our Daughters in the Future

I hope you’ll join us in raising awareness about the women’s health conditions that affect the people we love—and the people you love. These women are not statistics. They’re not being “dramatic” or “too emotional.” They are Mom, Nana, Auntie, Daughter, Friend.

As always, I’ve included data and references for everything I’ve shared above. (Again—thank you, ChatGPT, for helping curate these.) Please see the resources and stats below, which paint a clear picture of the disparities we’re up against.

— There is so much more to say, & even more that we can DO! Please help us make some noise!

With gratitude,
Kara

A Quick History Review

Thanks to ChatGPT research, here’s a timeline that puts things in perspective:1977 – The FDA banned women of childbearing age from participating in early drug trials. The reason? Hormonal “complexity” and fear of pregnancy-related liability (like the thalidomide crisis). That meant chemotherapy, heart meds, pain relief—all tested mostly on men.

1986–1987: The NIH began encouraging researchers to include women in funded studies. This was first published in the NIH Guide for Grants and Contracts

1993 – The NIH Revitalization Act required federally funded trials to finally include women and analyze sex-based differences.

The Pain Gap

Women experience chronic pain more frequently than men, but they’re still less likely to be treated seriously. A 2020 study of over 200,000 patients found:

  • Women consistently face longer delays and lower diagnostic accuracy than men—even for the same symptoms.

  • Women are:

    • Less likely to receive pain medication in the ER

    • Made to wait an average of 16 minutes longer

    • More likely to be told their symptoms are “psychological”

Despite the fact that 70% of chronic pain patients are women, 80% of pain research is still done on male animals or male subjects.

Let that sink in.

Comparison chart

Sources

  1. Reuters – Gates Foundation’s $2.5B women’s health initiative

  2. BMJ: Reimagining Women’s Health Is a Global Imperative

  3. STAT News: Women’s health funding still ignored

  4. FDA 1977 guidance

  5. NIH Revitalization Act

  6. Medidata: History of women in clinical trials

  7. NIH: Endometriosis Funding Summary

  8. SELF: The PCOS Medical Mystery

  9. New Security Beat: VC funding comparison

  10. Statista: Hair Loss Pharma Market

  11. RAND + WHAM Study on Economic Return

  12. arXiv Study on Gender Diagnostic Bias

  13. NIH: Gender Bias in ER Pain Treatment

  14. Scientific American: Sex Bias in Pain Research

Gates FoundationWomen's HealthMoneyFunding
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© Our Daughters Foundation - All Rights Reserved