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, Adenomyosis, and PCOS Autoimmune Conditions
The Immune Connection: Are Endometriosis, Adenomyosis, and PCOS Autoimmune Conditions?
By Our Daughters Foundation
More and more women are asking an important question: Could my hormone-related illness also be connected to my immune system?
Conditions like endometriosis, adenomyosis, and polycystic ovary syndrome (PCOS) are often discussed in the context of reproductive health or hormonal imbalance. But researchers are beginning to explore deeper connections—specifically, whether autoimmunity plays a role in these diseases.
Let’s break down what the science says—and what questions remain unanswered.
What Is Autoimmunity?
The immune system is designed to protect the body from threats like viruses and bacteria. But in autoimmune diseases, the immune system becomes misguided and starts attacking the body’s own cells and tissues.
Common autoimmune conditions include:
• Lupus
• Rheumatoid arthritis
• Hashimoto’s thyroiditis
• Multiple sclerosis
Symptoms vary widely, but many autoimmune conditions involve chronic inflammation, pain, fatigue, and a pattern of flare-ups.
The Immune System and Endometriosis
Endometriosis occurs when tissue similar to the uterine lining grows outside the uterus—causing pain, inflammation, and sometimes infertility. While its exact cause is still debated, many researchers believe that the immune system fails to clear out these rogue cells effectively.
Several studies have found:
• Women with endometriosis often have higher levels of inflammatory markers, like cytokines and prostaglandins.
• Natural killer (NK) cell activity is lower in women with endometriosis, impairing the immune system’s ability to destroy misplaced cells.
• There are elevated autoantibodies in some patients, suggesting an autoimmune component.
Some scientists now consider endometriosis to be a non-classical autoimmune disease—showing many features of one without meeting all diagnostic criteria.
Further reading:
• NIH - Immune dysfunction in endometriosis: https://pubmed.ncbi.nlm.nih.gov/30664929/
• Cleveland Clinic - Endometriosis and the Immune System: https://health.clevelandclinic.org/endometriosis-and-the-immune-system/
What About Adenomyosis?
Adenomyosis is sometimes called the "sister disease" of endometriosis. It occurs when endometrial tissue grows into the muscular wall of the uterus. It's less studied, but immune abnormalities have also been observed.
Research is still emerging, but here’s what we know:
• Women with adenomyosis show immune cell changes and chronic inflammation within the uterus.
• Some studies report increased macrophage and mast cell activity—cells involved in both immune defense and inflammation
• The condition often coexists with endometriosis, raising questions about shared immune pathways.
While it’s too early to label adenomyosis an autoimmune disorder, it may involve an immune imbalance that contributes to symptoms.
Further reading:
• Frontiers in Immunology - Immunopathogenesis of Adenomyosis: https://www.frontiersin.org/articles/10.3389/fimmu.2021.796273/full
PCOS and Autoimmune Overlap
Polycystic ovary syndrome (PCOS) is primarily known as a hormonal disorder involving androgen excess and insulin resistance. However, there’s growing interest in its immune connections, especially in women with chronic inflammation or thyroid issues.
Emerging links include:
• Hashimoto’s thyroiditis (an autoimmune thyroid disorder) is more common in women with PCOS.
• Inflammatory markers like C-reactive protein (CRP) are often elevated in PCOS patients.
• Some PCOS patients have anti-ovarian antibodies, suggesting potential autoimmunity.
Still, the autoimmune theory is more speculative in PCOS than in endometriosis.
Further reading:
• Journal of Clinical Endocrinology & Metabolism - PCOS and Autoimmune Disease: https://academic.oup.com/jcem/article/106/9/e3536/6280755
Why Does This Matter?
If immune dysfunction is part of the puzzle, treatment strategies may need to shift. Many women with endometriosis, adenomyosis, or PCOS are treated solely with hormone suppression—but if autoimmunity is involved, we may also need to address inflammation, gut health, and immune regulation.
There’s also hope that newer treatments—like immunomodulatory therapies or even personalized nutrition and lifestyle interventions—could improve outcomes when tailored to the immune system’s role.
Bottom Line
We don’t yet have all the answers, but the research is evolving. Endometriosis, adenomyosis, and PCOS may not be traditional autoimmune diseases—but they often coexist with immune dysfunction, and the overlap deserves attention. At Our Daughters Foundation, we believe in honoring women’s voices, advocating for deeper research, and pursuing whole-body solutions.
If you’ve experienced overlapping conditions like endo, thyroid disease, or unexplained inflammation—you’re not alone.
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.
