FAQs: Get Your Endometriosis Questions Answered
From diagnosis delays to treatment options, find straightforward answers to the questions you have about endometriosis.
FAQs: Get Your Endometriosis Questions Answered
From diagnosis delays to treatment options, find straightforward answers to the questions you have about endometriosis.
What is endometriosis, and is it considered a menstrual disease?
Endometriosis is a systemic, inflammatory condition characterized by tissue similar to the lining of the uterus growing in other parts of the body. Endometriosis has been found in every organ. It is not simply a menstrual disease, yet is often mischaracterized as such, even by reputable sources.
Approximately how many people are affected by endometriosis, and what are some common symptoms they may experience?
Endometriosis affects approximately 1 in 10 people born with female reproductive organs. Common symptoms include, but are not limited to, pelvic pain any time during the month, a wide range of GI symptoms, urinary symptoms, fatigue, debilitating periods and more depending on where the endometriosis lesions are located in the body.
What is the average diagnostic delay for endometriosis, and what factors contribute to this delay?
Symptoms often start early in life, but due to cultural taboos, misinformation and a historical lack of emphasis in medical education, they may be ignored or misdiagnosed by caregivers, healthcare consumers and practitioners alike. The average diagnostic delay is 7-10 years.
When can endometriosis symptoms begin, and what percentage of teenagers withchronic pelvic pain may have the condition?
Endometriosis symptoms may begin as early as when puberty starts. Endometriosis symptoms can present before menstruation, during menstruation, and/or after menstruation. An estimated 70% of teens with chronic pelvic pain go on to be later diagnosed with endometriosis.
What constitutes a "red flag" regarding pelvic pain, and what action should be taken if someone experiences this?
Red flag: If you or your patient regularly feels pain during or around periods, and this pain is bad enough to interfere with usual activities, this is a red flag - it is not normal and should be investigated further as soon as possible. (If you do not have this, it doesn't mean that you don't have endometriosis).
Identified risk factors for developing endometriosis.
Risk factors for endometriosis include a mother or sister having the disease (7x increased risk), early onset of menses, short or frequent menstrual cycles, Mullerian abnormalities, autoimmune conditions and more. However, many people develop endo who have none of these risk factors.
Is a hysterectomy considered a cure for endometriosis, and is pregnancy a cure?
Hysterectomy is not a cure for endometriosis. A disease characterized by tissue found outside of the uterus is not cured by removal of the uterus, ovaries and/or tubes and cervix. Over 100,000 hysterectomies are performed each year in the United States for endometriosis and most of them are unnecessary. Neither is pregnancy a cure for endometriosis.
Why are individualized, multi-disciplinary treatment plans needed for endometriosis, and which specialist should be consulted?
People with endometriosis need an individualized, multi-disciplinary treatment plan that may include specialized, incredibly difficult surgery. Most gynecologists are not trained in advanced endometriosis cases. Drug therapy may suppress symptoms, yet it does not eradicate endometriosis. Patients should be referred to an endometriosis specialist.
What are some common co-morbidities associated with endometriosis?
People with endometriosis have an increased risk of co-morbidities including allergies, asthma, and chemical sensitivities, autoimmune diseases such as multiple sclerosis and lupus, chronic fatigue syndrome and fibromyalgia, and certain cancers, such as ovarian and breast cancer.
How does endometriosis impact quality of life beyond physical symptoms, and what holistic approach is recommended?
Endometriosis often reduces quality of life and contributes to psychological distress. Unnecessary delays in diagnosis and gaslighting contribute to the negative mental health impacts of the disease. A holistic approach to care including mental health support can improve quality of life.
What is endometriosis, and is it considered a menstrual disease?
Endometriosis is a systemic, inflammatory condition characterized by tissue similar to the lining of the uterus growing in other parts of the body. Endometriosis has been found in every organ. It is not simply a menstrual disease, yet is often mischaracterized as such, even by reputable sources.
Approximately how many people are affected by endometriosis, and what are some common symptoms they may experience?
Endometriosis affects approximately 1 in 10 people born with female reproductive organs. Common symptoms include, but are not limited to, pelvic pain any time during the month, a wide range of GI symptoms, urinary symptoms, fatigue, debilitating periods and more depending on where the endometriosis lesions are located in the body.
What is the average diagnostic delay for endometriosis, and what factors contribute to this delay?
Symptoms often start early in life, but due to cultural taboos, misinformation and a historical lack of emphasis in medical education, they may be ignored or misdiagnosed by caregivers, healthcare consumers and practitioners alike. The average diagnostic delay is 7-10 years.
When can endometriosis symptoms begin, and what percentage of teenagers withchronic pelvic pain may have the condition?
Endometriosis symptoms may begin as early as when puberty starts. Endometriosis symptoms can present before menstruation, during menstruation, and/or after menstruation. An estimated 70% of teens with chronic pelvic pain go on to be later diagnosed with endometriosis.
What constitutes a "red flag" regarding pelvic pain, and what action should be taken if someone experiences this?
Red flag: If you or your patient regularly feels pain during or around periods, and this pain is bad enough to interfere with usual activities, this is a red flag - it is not normal and should be investigated further as soon as possible. (If you do not have this, it doesn't mean that you don't have endometriosis).
Identified risk factors for developing endometriosis.
Risk factors for endometriosis include a mother or sister having the disease (7x increased risk), early onset of menses, short or frequent menstrual cycles, Mullerian abnormalities, autoimmune conditions and more. However, many people develop endo who have none of these risk factors.
Is a hysterectomy considered a cure for endometriosis, and is pregnancy a cure?
Hysterectomy is not a cure for endometriosis. A disease characterized by tissue found outside of the uterus is not cured by removal of the uterus, ovaries and/or tubes and cervix. Over 100,000 hysterectomies are performed each year in the United States for endometriosis and most of them are unnecessary. Neither is pregnancy a cure for endometriosis.
Why are individualized, multi-disciplinary treatment plans needed for endometriosis, and which specialist should be consulted?
People with endometriosis need an individualized, multi-disciplinary treatment plan that may include specialized, incredibly difficult surgery. Most gynecologists are not trained in advanced endometriosis cases. Drug therapy may suppress symptoms, yet it does not eradicate endometriosis. Patients should be referred to an endometriosis specialist.
What are some common co-morbidities associated with endometriosis?
People with endometriosis have an increased risk of co-morbidities including allergies, asthma, and chemical sensitivities, autoimmune diseases such as multiple sclerosis and lupus, chronic fatigue syndrome and fibromyalgia, and certain cancers, such as ovarian and breast cancer.
How does endometriosis impact quality of life beyond physical symptoms, and what holistic approach is recommended?
Endometriosis often reduces quality of life and contributes to psychological distress. Unnecessary delays in diagnosis and gaslighting contribute to the negative mental health impacts of the disease. A holistic approach to care including mental health support can improve quality of life.
Breaking the Silence: Why Endometriosis Took So Long to Be Taken Seriously and What’s Finally Changing
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)
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.
