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

Endo Leg Pain

How Does Endometriosis Cause Leg Pain

August 13, 20253 min read

How Does Endometriosis Cause Leg Pain?

Leg Pain with Endo

Many patients experience pain in their legs and hips among their endometriosis symptoms. A variety of factors contribute to this, and  patients can experience leg pain due to one or several of these factors even if the problem is not in their leg or even directly on the nerves travelling to the leg.

One common way we see leg pain from endometriosis comes from something called “referred pain.”   Referred pain occurs when the trigger for the pain is located in a different part of the body from where the patient actually experiences that pain. A variety of different things can cause referred pain, including irritation of nerves as they pass through the area where the trigger is located, muscle and nerve dysfunction related to the trigger of the pain, or what we consider to be a case of “mixed signals” which occurs when the body is experiencing pain in an area that, because pain isn’t typically generated in that place, the pain signal is interpreted by the body as being in a different location.  A classic example of “referred pain” is when pain in the hip is actually being caused by a trigger located on the pelvic sidewall or sometimes in or on the ovary.  This can be diagnostically challenging because not all hip pain is caused by something going on inside of the pelvis, but in some cases this is how the body will interpret pain in the ovary or pelvis. 

Another potential source of leg pain comes from the fact that endometriosis can trigger severe pelvic floor dysfunction.  When a high degree of tension is placed on the many muscles of the pelvic floor, this can put pressure on the nerves that travel through the pelvis to the leg. That degree of tension adds up over time and can cause a severe pain that often shoots down the back of the leg, often manifesting as what patients will describe as a sciatica-type pain. While endometriosis is the trigger for this pain, and therefore does need to be removed in order to gain long-term relief, physical therapy is often also an integral part of treatment for this type of pain because significant work is required to undo the long-term tension of the pelvic floor that was imposed over many years by endometriosis. 

The least common but most challenging type of leg pain caused by endometriosis is when the endometriosis directly invades the major nerves that travel to the leg through the pelvis. This can happen with any of the major nerves including the sciatic nerve, the pudendal nerve and the obturator nerve. The sciatic nerve is the most commonly discussed of these because of its hallmark, which is severe radiating posterior leg pain that is unrelenting and unresponsive to medications or physical therapy. The good news is that this type of endometriosis can generally be seen on imaging due to its invasive nature, and therefore an expert team can make preparations to address and manage this very complex, though rare, manifestation of endometriosis. (This blog post was written by Washington Endometriosis & Complex Surgery, Washington DC)

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