From diagnosis delays to treatment options, find straightforward answers to the questions you have about endometriosis.
From diagnosis delays to treatment options, find straightforward answers to the questions you have about endometriosis.
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.
Endometriosis affects approximately 1 in 10 women. 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.
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.
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.
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).
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.
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.
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. We cannot emphasize this enough, please go to a an endometriosis specialist. Your regular OB/GYN should refer you to one if they suspect you have endo.
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. Many doctors are also seeing MCAS, POTS and hEDS as common co-morbidities.
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 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.
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.
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.
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.
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).
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.
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.
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.
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.
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.

One word has stayed with me ever since I heard it.
A few weeks ago, I had the privilege of participating in a talking circle in Manhattan hosted by Gloria Steinem. Around twenty women gathered in a circle, each bringing her own story of living with or caring about endometriosis. We were asked a simple question: If you could describe endometriosis in one word, what would it be? Around the room came words like validation, isolation, science, community, hope, and anger. Every answer reflected a different part of the journey, yet every woman in the room immediately understood what the others meant. We didn't all share the same experiences, but we recognized the emotions behind each word.
Then one woman quietly said, "Thief."
She explained that endometriosis had stolen so much from the life she thought she was going to have. It had taken years she could never get back. It had altered relationships, interrupted plans, changed the direction of her career, and replaced certainty with constant unpredictability. Her word has stayed with me because I don't think it describes only endometriosis. Chronic illness, chronic pain, and many of life's deepest struggles have a way of taking things from us. They change our bodies, our schedules, our relationships, and sometimes even the picture we once had of our future. If we're not careful, they can also begin to steal something much more subtle: our willingness to continue participating in our own lives.
I've thought about that conversation many times since returning home. I don't think any of us would deny that illness changes us. It asks us to adjust our expectations, our routines, and often the pace at which we move through life. There are real losses that deserve to be acknowledged, and pretending they don't exist serves no one. At the same time, I've become increasingly convinced that while our circumstances shape us, they don't have to define us. In fact, one of the most important lessons I've learned through studying neuroscience, teaching executive functioning, living with chronic illness, and growing in my own faith is this: our lives are shaped less by the circumstances we face than by the small, meaningful choices we continue to make within those circumstances.
I have conversations almost every week with women who wonder, sometimes quietly and sometimes through tears, whether they've somehow missed the life they were supposed to live. They tell me they don't have the energy they once had. They hesitate to make plans because they never know how they'll feel tomorrow. They carry dreams that have remained tucked away for years because they no longer believe they have what it takes to pursue them. I understand those feelings because I've wrestled with them myself. But I've also come to believe that there is an important difference between accepting the realities of our lives and allowing those realities to quietly convince us that we no longer have something meaningful to contribute. Acceptance acknowledges what is true. Resignation surrenders possibilities that may still be waiting for us.
Change Remains Possible
One of the reasons I’ve become so interested in neuroscience is because it continually reminds me that change remains possible. For much of history, scientists believed that the adult brain was relatively fixed. We now know that isn’t true. Our brains are remarkably adaptable, continually changing in response to repeated experiences through a process known as neuroplasticity. That means the choices we make today don’t simply influence what we accomplish. Over time, they help shape who we become. I find that incredibly hopeful because it reminds me that whilewe cannot always choose our circumstances, we are not powerless within them.
One area of the brain that has fascinated me for years is the anterior cingulate cortex, or ACC. I was first introduced to it through my work teaching executive function skills, but the more I’ve studied it, the more I believe it offers hope far beyond the classroom. The ACC plays an important role in attention, emotional regulation, decision-making, and perseverance. It helps us continue doing something meaningful or challenging when another part of us would rather retreat to what feels safe or familiar. Every time we choose a meaningful or challenging action over avoidance, we strengthen the neural pathways involved in doing difficult things. We don’t simply finish the task in front of us.We gradually become the kind of people who are more capable of facing discomfort with courage rather than fear.
That doesn’t mean we ignore our bodies or push through legitimate physical limitations. Living with chronic illness requires wisdom, and wisdom sometimes says, “Today I need to rest.” Rest is not failure. It is often one of the healthiest decisions we can make. But there is another kind of discomfort that has very little to do with illness. It is the discomfort of beginning something we’ve postponed, making the phone call we’ve been avoiding, writing the first page, introducing ourselves to someone new, volunteering our time, or pursuing an idea that has quietly lived in our hearts for years. Learning to distinguish between physical limitation and fear has become one of the most important lessons of my own journey.Sometimes courage looks like taking a nap. Other times it looks like taking the next step.
I’ve spent years watching this unfold in my students. The ones who grow the most are rarely the ones who begin with the greatest confidence. They are the ones who are willing to take one small step before they feel ready. At first they avoid difficult assignments because failure feels uncomfortable. Then they begin attempting one problem instead of none, writing one paragraph instead of waiting for inspiration, asking one question instead of pretending they understand. Something remarkable begins to happen. Their confidence doesn’t appear before the action. It grows because of the action. Every meaningful choice becomes evidence that they are capable of more than they believed. I don’t think that’s true only for teenagers. I think it’s part of how God designed all of us.
That pattern is one of the reasons I continue returning to Scripture. The people we meet there are rarely introduced as exceptionally qualified. Moses doubted his ability to speak. Gideon questioned why anyone would choose him. David was overlooked before anyone recognized his potential. Paul pleaded for the removal of the thorn in his flesh and instead discovered that weakness did not place him outside of God’s purposes.Their limitations became part of their stories, but they did not become the defining feature of their lives.Each of them continued taking the next step before they could see the entire path ahead.
I don’t think those stories are simply about extraordinary people. I think they remind us of something deeply human. We all want certainty before we begin. We all want guarantees that our efforts will matter. Yet life rarely works that way. Whether we approach that reality through faith, neuroscience, or simply lived experience, the conclusion seems remarkably consistent. We ‘become’ through repeated choices. Every time we choose what is meaningful over what is merely comfortable, we are literally shaping our brain and our future.
Perhaps that’s why I haven’t stopped thinking about that one word from the talking circle.
Thief.
She was right.
Chronic illness can be a thief. It can steal years, energy, opportunities, relationships, certainty, and the picture we once had of the future. Those losses are real, and they deserve to be acknowledged. We don’t honor suffering by pretending it doesn’t hurt.
But I’ve also come to believe that there is something illness cannot steal unless I quietly hand it over.
It cannot choose who I become.
That decision is shaped little by little, one meaningful choice at a time. It is shaped when I choose to encourage someone instead of withdrawing. When I begin writing before I feel inspired. When I make the difficult appointment I’ve been avoiding. When I continue learning, serving, creating, praying, resting wisely, loving generously, and taking whatever next step is available to me today. None of those choices erase my illness, but every one of them reminds me that my illness is only one chapter of my story.
Our lives are shaped less by the circumstances we face than by the small, meaningful choices we continue to make within them. I believe that with all my heart. It is what I’ve observed in neuroscience. It is what I’ve witnessed in my students. It is what I’ve seen in remarkable women living with chronic illness. It is what I find echoed throughout Scripture. We become, little by little, through the actions we repeatedly take.
References for Further Reading
Neuroscience & Executive Function
Diamond, A. (2013). Executive Functions.Annual Review of Psychology, 64, 135–168.
https://doi.org/10.1146/annurev-psych-113011-143750
Posner, M. I., & Petersen, S. E. (1990). The Attention System of the Human Brain.Annual Review of Neuroscience, 13, 25–42.
https://doi.org/10.1146/annurev.ne.13.030190.000325
Posner, M. I., & Rothbart, M. K. (2007). Educating the Human Brain. American Psychological Association.
Davidson, R. J., & Begley, S. (2012). The Emotional Life of Your Brain. Hudson Street Press.
Doidge, N. (2015). The Brain's Way of Healing. Viking.
Meaning, Purpose & Human Flourishing
Frankl, V. E. (2006). Man's Search for Meaning. Beacon Press. (Original work published 1946)
Ryan, R. M., & Deci, E. L. (2017). Self-Determination Theory: Basic Psychological Needs in Motivation, Development, and Wellness. Guilford Press.
Seligman, M. E. P. (2011). Flourish. Free Press.
Chronic Illness & Resilience
Tedeschi, R. G., & Calhoun, L. G. (2004). Posttraumatic Growth: Conceptual Foundations and Empirical Evidence.Psychological Inquiry, 15(1), 1–18.
Southwick, S. M., & Charney, D. S. (2018). Resilience: The Science of Mastering Life's Greatest Challenges (2nd ed.). Cambridge University Press.
Scripture
Exodus 3–4 (Moses)
Judges 6–7 (Gideon)
1 Samuel 16–17 (David)
2 Corinthians 12:7–10 (Paul's thorn)
Ephesians 2:10
Romans 5:3–5
James 1:2–4
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Your support can transform lives. Every donation helps us fund research, advocate for better care, and provide essential grants to women facing debilitating conditions.