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.
Why Menopause Does Not Treat Endometriosis
Why menopause does not treat endometriosis
Quite often endometriosis patients are told to have their ovaries removed or put their activity on hold with hormonal medication as a way of treating the disease. As demonstrated by some studies, endometriosis lesions have the potential to produce their own oestrogen, as such removal of ovaries or temporary menopause will have little or no impact on the endometriosis itself.
What is oestrogen?
Various laboratory studies have shown that endometriosis is an oestrogen dependent disease. In females, the highest quantity of oestrogens is produced in ovaries. It is also produced in small amounts in other organs such as liver, heart and brain. The oestrogen is divided in three categories: E1 known as estrone, E2 known as estradiol and E3 known as estriol.
Out of all 3 oestrogen types the E2 is the most potent and it is active during the fertility period. E1 is more potent after the menopause and it is synthesised in adipose tissue from adrenal dehydroepiandrosterone, whilst E3 has a role in pregnancy, it’s produced by placenta during pregnancy, and it is the least potent one.
What is aromatase?
The conversion of androstenedione and testosterone E1 and E2 is done by the aromatase. Aromatase is expressed in places such as the brain, gonads, blood vessels, adipose tissue, liver, bone, skin, and endometrium. In fertile women the oestrogen biosynthesis takes place in the ovary, while in postmenopausal women it takes in extraglandular tissues such as adipose tissue and skin.
The role of aromatase expression in endometriosis
One of the first studies that have demonstrated the presence of aromatase expression in endometriosis implants was published in 1996.
To demonstrate the presence of aromatase in endometriosis implants, the scholars have conducted a study analysing and comparing biopsy samples from:
endometriosis implants from pelvic peritoneum (posterior cul-de-sac, bladder, and anterior cul-de-sac);
endometrial tissue in patients with histologically documented pelvic endometriosis;
pelvic peritoneal distal and normal endometrial tissues from women without endometriosis;
Based on the results, P450arom transcripts were detected in all endometriosis implants.The highest presence of P450arom was detected in endometriosis implants that involved the full thickness of the anterior abdominal wall. Also, in the core of the endometriosis implants, the P450arom transcript level was 4-fold higher than that in the surrounding adipose tissue. The authors concluded that the possibility of oestrogen production in endometriosis implants might promote their growth.
Other studies have also demonstrated a higher expression of aromatase in endometriosis implants. Zeitoun KM et al. concluded that molecular aberrations can impact the oestrogen biosynthesis leading to an increased local concentration of E2. The aberrant expressed aromatase in the endometriotic stromal cells converts C19, steroids to oestrogens.
Moreover, a immunohistochemical analysis found that the local estrogen production by aberrantly elevated aromatase takes place only in endometriosis and adenomyosis, and not in the normal endometrium.
In conclusion, removal of ovaries to stop the production of oestrogen as a way of treating endometriosis is not an efficient method, especially if endometriosis lesions are not removed. Endometriosis produces its own oestrogen and as long as the disease is left beyond it will continue to cause symptoms and impact organs.
-Athens Centre for Endometriosis
