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.
Inspiring Grassroots Fundraising
What Grassroots Fundraising Can Do: A Lesson from Cystic Fibrosis and a Call to the Endometriosis Community
There are moments in history when ordinary people decide they are no longer willing to wait.
They look at the suffering in front of them. They look at the lack of answers. And instead of accepting it, they build something.
That is exactly what happened with cystic fibrosis.
The Cystic Fibrosis Story
In the 1950s, children born with cystic fibrosis rarely lived long enough to attend elementary school. Families were told there was little that could be done.
But parents did not accept that.
They organized. They fundraised. They told their stories. And in 1955, they helped launch theCystic Fibrosis Foundation.
What happened next is one of the most powerful examples of grassroots impact in modern medicine.
Over decades, this community raised billions of dollars and funded targeted, strategic research. That investment directly contributed to breakthrough therapies, including drugs likeTrikafta, which address the underlying cause of the disease for many patients.
Today, the median predicted survival age for people with cystic fibrosis in the United States is over 50 years. That is a dramatic increase from childhood mortality just a few generations ago.
This did not happen by accident.
It happened because a community decided to act.
Why This Matters for Endometriosis
Endometriosis affects an estimated 1 in 10 women. It is a systemic inflammatory disease that can impact every part of the body. Yet it remains underfunded and under-researched compared to its prevalence and burden.
Many women wait years for a diagnosis. Many undergo multiple surgeries. Many are told their pain is normal.
We see this every day.
And it raises a question we cannot ignore.
What if we stopped waiting for the system to fix this and started building something together?
Grassroots Movements That Changed Medicine
The cystic fibrosis story is not the only example.
There is a pattern here.
HIV and AIDS Activism
In the 1980s and 1990s, patient advocates organized through groups likeACT UP. They demanded faster drug approval, better research funding, and inclusion in clinical trials.
Their advocacy reshaped how clinical trials are conducted and accelerated access to life-saving treatments.
Today, HIV is a manageable chronic condition for many people. That transformation was driven in part by grassroots pressure and funding.
Breast Cancer Advocacy
Grassroots campaigns helped turn breast cancer into one of the most funded areas of medical research. Organizations likeSusan G. Komen Foundationmobilized millions of people through awareness campaigns and fundraising events.
That visibility translated into increased federal funding, improved screening, and better treatment options.
ALS and the Ice Bucket Challenge
In 2014, a simple social media campaign changed everything.
TheALS Ice Bucket Challengeraised over 100 million dollars for theALS Associationin a matter of months.
According to the ALS Association, those funds contributed to identifying new ALS-related genes and advancing research pipelines.
A global movement started with individuals sharing a video and inviting others to join.
What These Stories Have in Common
These movements look different on the surface, but they share the same foundation.
They were built by people who were directly affected.
They told their stories.
They invited others in.
They gave what they could.
And over time, those small actions added up to something powerful.
The Opportunity in Front of Us
This is exactly why we created the Endo Research Alliance. (Endoresearchalliance.org)
We believe that no single organization can solve this alone. But together, we can begin to fund the kind of research that leads to real answers. And the timeline is shrinking due to what we have learned with cancer research. And now AI speeds research outcomes exponentially. That spells HOPE! Miracles are closer than we think!
Join us as a partner, please. There is no minimum donation.
There is no barrier to entry.
There is simply an invitation.
To be part of something that matters.
To help fund research that could change the future for millions of women.
To turn frustration into action.
A Final Thought
We are not comparing diseases. Every condition carries its own burden, its own story, and its own urgency.
But we can learn from what has worked.
Cystic fibrosis did not become a story of progress because the system suddenly changed.
It became a story of progress because people changed it.
And that same opportunity is in front of us now.
References and Notes
Cystic Fibrosis Foundationpatient registry reports and historical data
Trikaftaapproval and outcomes reported by Vertex Pharmaceuticals and peer reviewed studies
ALS Associationreports on Ice Bucket Challenge impact
NIH and CDC data on HIV treatment advancements and breast cancer funding trends
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.
