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.
My Story: Lisa Tierney-Keogh
Personal Stories: “I’ve Been Branded a Hypochondriac So Many Times”
In a powerful piece published by The Irish Times on July 13, 2025, writer Lisa Tierney-Keogh shares the raw truth of living with endometriosis—a disease that affects an estimated 1 in 10 women. But for Lisa, the real pain wasn’t just the physical suffering—it was the decades-long silence, disbelief, and dismissal by the healthcare system.
“With all the health problems I’ve endured since childhood, I’ve been branded a hypochondriac so many times… I was gaslit into believing that my body was fine—but that I, Lisa, was the problem.”
Lisa describes how, despite agonizing symptoms—pain that radiated to her back, legs, shoulders, and even her diaphragm—she spent nearly 30 years without a diagnosis. Even after her first surgery, she was told “there was just one spot” of endometriosis. But the pain came back worse than ever.
“I couldn’t walk more than 15 minutes. I couldn’t sleep. I was told by one doctor that I ‘think I’m in constant pain.’ That’s when I knew I was in trouble.”
Her story is not unique. For many women, that diagnosis delay comes with job loss, infertility, financial strain, and psychological trauma. This story is about Lisa's experience in Ireland, but this story is common in every country including the US. Average times for diagnosis are very similar in the US, and we still do not have excision specialists in every state. Treatment also can come with a very high price tag because often insurance does not cover the costs of surgery or treatments like Pelvic Floor PT that are shown to give some relief.
A quick summary of Lisa's story:
1. A Burden Hidden in Plain Sight
Endometriosis affects about 1 in 10 Women individuals globally—and many suspect it’s even more common—yet in Ireland the average diagnosis delay is 8–10 years. The author, Lisa Tierney‑Keogh, waited an astonishing 28 years for confirmation
The NHS classifies it among the top 20 most painful conditions, yet research funding and clinical resources remain deeply inadequate
2. A Life of Unbearable Pain—And Distrust
Symptoms extend far beyond pelvic cramps: they include “leg and back pain, shoulder pain, fertility issues, painful bowel issues, headaches, brain fog, chronic fatigue, shortness of breath…”
As a child and teen, Lisa was repeatedly dismissed:
“With all the health problems I've endured since childhood, I've been branded a hypochondriac so many times, been gaslit into believing…my body was fine, but I, Lisa, was the problem.”
3. Diagnosis and the Broken System
The path to diagnosis is nearly always surgical (laparoscopy), but Ireland’s system is crippled by understaffed clinics and long OR waitlists
Even when undergoing surgery in early 2020, Lisa was told only “one spot of endometriosis” was found and ablated—but the disease returned with a vengeance
4. Pain Ignored—or Gaslit
After surgery, Lisa's pain intensified drastically. She couldn’t walk more than 15 minutes or sleep through the night, yet medical communication described her as thinking she’s in constant pain
“When I’m cc’d on a letter that includes the sentence, ‘She thinks she’s in constant pain,’ I realise I’m in trouble.”
— Lisa Tierney‑Keogh
Read Lisa's full story from the Irish Times by clicking the link below:
“Life with endometriosis: I've been branded a hypochondriac so many times” – The Irish Times
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.
