Our Daughters Foundation
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.
Steps Forward for Endometriosis
A Historic Step Forward for Endometriosis & Women’s Health Research
So often the news for endometriosis sufferers feels frustrating and overwhelming. It can appear as if there is nothing happening and that there is no light or hope. But there are so many people fighting behind the scenes for YOU. People who care, people who have shared your experience and are determined to make a difference.
As I have done in the past, I want to offer women (& the people who LOVE them) hope and share some GOOD news!
Progress is being made.
That is coming in the form of new legislation and donated funds, its coming in the form of research breakthroughs and it sometimes comes in the form of women & men who show how much they care and stand with you. All of that points to hope!
Please see below some of the exciting breakthroughs we are seeing in the area of women’s health, and in endometriosis care. And please…Keep raising your voices! The collective voices of men & women make a huge difference for ALL.
1. A New Federal Definition of Endometriosis
For the first time in U.S. history, federal appropriations report language recognizes endometriosis as a chronic, systemic, inflammatory, multi‑organ disease — not simply a reproductive condition.¹
This shift reflects what women and researchers have known for years: endometriosis impacts far more than pelvic organs. It affects immune function, inflammation pathways, the nervous system, gastrointestinal health, and overall systemic wellbeing. By recognizing endometriosis as a systemic inflammatory condition, Congress has opened the door to broader research approaches and more comprehensive care models.
2. Federal Budget Prioritizes Women’s Health Research
The FY 2026 Labor‑HHS appropriations bill — which funds the National Institutes of Health (NIH) and other health agencies — reinforces growing congressional attention to women’s health research.²
Increased attention to women’s health research infrastructure, along with supportive report language for endometriosis, signals meaningful progress toward correcting decades of underinvestment in conditions that affect millions of women.
3. Continued Advocacy Through Federal Legislation
The bipartisan Endometriosis CARE Act seeks to expand federal research funding, improve public awareness, study disparities in diagnosis and treatment, and strengthen care pathways for women living with endometriosis.³
While additional legislative steps remain, the continued introduction and support of this bill demonstrates that lawmakers are listening.
Why This Matters
For decades, endometriosis was narrowly categorized in ways that limited research and policy priorities. Recognizing it as a chronic inflammatory disease affecting multiple organ systems represents a fundamental shift in understanding — and a powerful step toward earlier diagnosis, better treatments, and long‑term solutions.
At Our Daughters Foundation, this progress is deeply personal. We know the cost of delayed diagnosis, inadequate insurance coverage, and fragmented care. These developments on Capitol Hill are signs that change is possible — and that advocacy matters.
Sources & Footnotes
1. FY 2026 Federal Appropriations Report Language on Endometriosis.
2. FY 2026 Labor‑HHS Appropriations Bill (NIH Funding Framework).
3. Endometriosis CARE Act – Congress.gov (H.R. 6682).
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.
