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.
What I Wish More People Knew About Endometriosis Surgery
What I Wish More People Knew About Endometriosis Surgery
At Our Daughters Foundation, we talk a lot about how knowledge is power — especially when it comes to our bodies. Endometriosis is one of those conditions that’s too often misunderstood or minimized, and sadly, women are often given confusing and misleading information. I receive calls or emails several times per week from women who are suffering with endometriosis. I’m still shocked that doctors who are supposed to be ‘women’s doctors’ are giving out false information or even worse, performing outdated surgery. But the truth is, the type of surgery you have, and who performs it, can completely change your outcome.
So today, I want to share (& expound a bit) on a post by Dr. Lora Liu, Endometriosis Surgeon and Excision Specialist. If you don’t follow Dr. Liu’s social media pages, I wholeheartedly recommend that you do. This post from Dr. Liu details ‘what I wish more people knew about endometriosis surgery — the kind of information I wish every patient had before sitting down with their surgeon.’
1️⃣ There Are Two Types of Endometriosis Surgery
There are two main ways surgeons treat endometriosis:
👉Ablation, which means burning the surface of the lesions.
👉Excision, which means cutting the disease out completely, by its roots.
Here’s the key: only excision removes the disease fully. Ablation can leave behind deeper disease that keeps causing pain, inflammation, and all those familiar symptoms we’re trying to escape.
If you’re considering surgery, ask your surgeon which technique they use — it makes a huge difference.
2️⃣ There’s No Formal Fellowship for “Endometriosis Surgery”
This one surprises a lot of people. There’s actually no official training program or certification for endometriosis surgery.
That means experience varies a lot from one surgeon to another. Some gynecologists might do a handful of cases a year; others dedicate their entire careers to this disease.
So please — don’t be shy about asking questions. Ask about your surgeon’s training, approach, and how many endometriosis cases they handle regularly. It’s your body, and you deserve someone who truly specializes in it.
3️⃣ “High Volume” Means Something Different Here
In general gynecology, doing one endometriosis surgery a month might be considered “high volume.”
But in reality? Endometriosis specialists usually perform 20–30+ complex excision surgeries every month.
That kind of repetition builds skill — and when it comes to a disease as intricate as endo, that level of precision and experience can completely change your outcome.
4️⃣ True Excision Matters
When endometriosis is completely and thoroughly excised, recurrence rates drop dramatically. It is the gold standard for endometriosis treatment.
That’s why finding someone who does true excision surgery (not just burning the surface) is so important. The goal isn’t just temporary relief — it’s long-term healing and reclaiming your quality of life.
5️⃣ Diagnosis Isn’t Based on Symptoms or Scans Alone
I know how frustrating it is when your symptoms are dismissed because your scan “looks normal.” Unfortunately, that happens far too often.
The truth is, the only way to definitively diagnose endometriosis is through surgical tissue confirmation by pathology. Imaging and symptoms can guide the suspicion, but pathology gives the proof.
The Bottom Line
Endometriosis deserves precision, time, and expertise — not shortcuts. This isn’t a “quick fix” kind of disease, and the right surgery can truly change everything.
So if you’re on this journey, take your time finding the right surgeon. Ask questions. Advocate for yourself. You’re not being difficult — you’re being smart.💛
#endometriosis #womenshealth #excision #OurBodiesDeserveFacts
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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.
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.
