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 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.
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.
Since I was around 12 years old, I’ve lived with excruciating periods. The kind of pain that made me miss days of school, doubled over in cramps, throwing up, and unable to function. I was told it was just “bad periods” and to tough it out — but what I was feeling was far from normal.
In college, things took a sharp turn for the worse. What used to be cyclical pain around my period became daily suffering. The cramps, back pain, leg pain — it never let up. I went from being a Division I athlete, pushing my body to its limits, to barely being able to get through a short walk. Eventually, I had to give up the sport I loved. I was trying to stay positive, trying to find answers. But every doctor’s visit felt like hitting a wall. I was dismissed, doubted, and gaslit time and time again.
After years of searching, an ER doctor finally said the word: endometriosis. I learned that the only way to confirm it was through exploratory surgery. I wasn’t ready yet — I tried everything else first: diets, medications, lifestyle changes. Nothing worked. The pain only got worse. I didn’t recognize myself anymore — I was just surviving.
Eventually, I couldn’t wait any longer. I had the surgery. They found endometriosis on multiple organs, along with adhesions that had fused parts of my organs to my pelvic wall. The relief after surgery was surreal. I experienced pain-free days for the first time in years — but only for about nine months.
Then it came back.
I tried another surgery a year later. And again, the cycle repeated. Short-lived relief, followed by a painful return. That brings me to today. I live with chronic pain — every day — without knowing when or if it will end.
But I’ve found a new purpose. Out of this suffering came something beautiful: Our Daughter’s Foundation, a mission born from pain but fueled by hope. I want a better future for others with this disease — one where they’re believed, diagnosed earlier, and given better options.
Today, my symptoms are complex and relentless. I experience pelvic congestion which results in extreme swelling in my lower abdomen, hips, back, and legs. It’s not just painful — it affects how I see myself. I struggle with body image, fatigue, nerve pain that radiates from my back down my legs, and daily flares triggered by even the smallest disruptions to my routine. I can’t exercise like I want to. I can’t live the way I used to. Intimacy is painful. Mornings are brutal. Nights are unpredictable.
This disease has taken a lot from me — but it hasn’t taken my voice. If you’re reading this and struggling, you’re not alone. I see you. And I’m fighting for a world where you don’t have to suffer in silence. -Krissy Duenkel
Your support can transform lives. Every donation helps us fund research, advocate for better care, and provide essential grants to women facing debilitating conditions.
Your support can transform lives. Every donation helps us fund research, advocate for better care, and provide essential grants to women facing debilitating conditions.