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.

Allison

My Story: Allison

August 13, 20253 min read

Allison

"I honestly can’t remember a time when my monthly cycles felt “normal.” From early on, they were always painful—something I learned to dread every single month. I had symptoms that I now know aren’t normal, but back then, I just assumed this was how it was supposed to be.

My symptoms affected both my physical and mental health. The abdominal pain and cramping would leave me doubled over, sometimes unable to move. I experienced nausea, vomiting, dizziness, and terrible headaches. But even more difficult were the days when anxiety took over so completely that the simple act of getting out of bed would trigger a panic attack. All I could do was lay there, waiting for the wave to pass, hoping I could eventually function at even the most basic level.

Over time, this pattern began to erode my daily life. I was told over and over again that I just had “bad cycles,” and that hormonal birth control was the only option. I tried it and quickly realized it wasn’t sustainable for me. The other response I often got was silence—or worse: “suck it up,” “push through it,” “this is just part of being a woman.” So I did what I thought I had to do: I learned to silently suffer, white-knuckling my way through each month.

By the time I reached my thirties, after having my two sweet kids, I only had about 5 or 6 days each month where I could carry out everyday tasks without pain or debilitating symptoms. I was barely making it through. That’s when I knew something had to change—I couldn’t keep living like this.

I hadn’t considered endometriosis until my twin sister, who had gone through very similar experiences, was diagnosed after several surgeries. Her story opened the door for me to seek answers of my own. With the support of a trusted doctor, I underwent testing. They suspected both endometriosis and adenomyosis.

A few months later, I had surgery. It confirmed both diagnoses. My uterus was removed due to adenomyosis, and endometriosis was also found and excised. That surgery gave me my life back. And I don’t say that lightly. For the first time in decades, I wasn’t confined to my bed. I didn’t have to plan my life around pain. I could move, breathe, think, and live. My kids had their mom back. 

Some symptoms have returned in recent months, but this time I’m not doing it alone. I’m working closely with two practitioners—one addressing things holistically, the other exploring surgical options if needed. I feel supported, seen, and hopeful.

What I’ve learned through all of this is that far too many women are suffering in silence—dismissed, minimized, and left without answers. We’re told that this is just the way it is. But it doesn’t have to be.

That’s why I’m so incredibly grateful for Our Daughters Foundation and for people like Kara, who are bringing attention, support, and real solutions to parts of women’s health that have been ignored for far too long. Being told to “tough it out” leaves one feeling isolated. Knowing something’s wrong but not being sure if anyone will help you—that’s a different kind of pain.

Awareness changes that. Advocacy changes that. Community changes that.

Thank you, Our Daughters Foundation, for fighting for us—for helping women everywhere feel less alone, and for making it known that “just a bad period” is never something we should accept."

-Allie

Personal StoriesHopeExcisionEndometriosis
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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.

© Our Daughters Foundation - All Rights Reserved

© Our Daughters Foundation - All Rights Reserved