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.
Endometriosis: A Cancer-Mimicking Disease
A recent article published in the Annals of Research in Oncology (Vol. 5 June 2025) looks at the similarities between the behavior of some cancers and endometriosis. The article states, "Endometriosis, defined by the presence of endometrial-like tissue beyond the uterine cavity, afflicts over 190 million young women worldwide and often significantly reduces quality of life. Despite being historically classified as a benign gynecologic disorder, endometriosis can mimic cancer in imaging findings, serum tumor markers, and molecular signature." The article urges a different approach to the disease due to the fact that the current approach takes so long to diagnose (8-10 years on average) and leads many women down the path of repeated surgeries and hormone therapy that does little to treat the disease. The impact statement of the article urges a different approach altogether, "This perspective advocates a structured translational approach, integrating meticulous preclinical validation, phase-appropriate clinical trials, and rigorous safeguards in artificial intelligence and biomarker development, to bridge critical gaps in understanding disease biology."
We have summarized the points of the article below and also put the link to the full article. We fully believe that it is time for a different approach and are looking for opportunities to support research that is happening in the study of Endometriosis. Please join us in raising awareness and making some noise on the topic.
Summary of Article (in an oversimplified manner):
Why Endometriosis Acts Like Cancer
It spreads like cancer.
It can grow into nearby organs and even travel around the body—just like cancer does. It invades nearby tissue and can spread to just about any place in the body including the brain, the tissue in your legs, lymph nodes...they have found it just about everywhere.
It tricks doctors.
On scans and in lab tests, it looks just like cancer, so people sometimes get misdiagnosed. Even trickier, more often than not, Endometriosis lesions are not detectable on imaging which means that a diagnostic laparoscopic surgery is needed for diagnosis. Imagine how long that prolongs diagnosis and how often the diagnostic surgery is not covered by insurance. Even worse, how often women are told that "all is normal" because nothing was detected on imaging.
It won’t stop growing.
The tissue doesn’t follow normal rules—it keeps growing even when it’s not supposed to. Healthy cells know when to stop growing. Endometriosis doesn't. It uses the same tricks that cancer cells do to stay alive and keep growing.
It builds its own blood supply.
Like cancer, it tells the body to grow new blood vessels to feed it. The article gets into more specifics by explaining that endometriosis uses high levels of VEGF, MIF, and prostaglandins to build blood vessels - a hallmark of tumor growth.
It hides from the immune system.
It finds ways to stay safe, so the body doesn’t attack it—just like some cancer cells.
It has messed-up signals.
Inside the cells, the “messages” that tell cells when to grow or die are broken. These are the same bad messages found in cancer cells.
What These Doctors Are Saying:
Endometriosis has many of the same cell problems that cancer does.
Some women with endometriosis have a higher risk of getting a certain kind of ovarian cancer.
Doctors think we should study and treat it more like cancer, using:
Special medicines that stop growth
Tests to find it earlier
Research on how to stop it from coming back
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.
