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.
The Overlooked Link: Allen-Masters Syndrome and Endometriosis
The Overlooked Link: Allen-Masters Syndrome and Endometriosis
How a Little-Known Condition Can Complicate Diagnosis and Treatment for Women in Pain
What Is Allen-Masters Syndrome?
Allen-Masters Syndrome (AMS) refers to a condition where the ligaments that support the uterus become torn or stretched, often due to trauma or childbirth. The damage causes the uterus to become hypermobile, or “floppy,” which can lead to chronic pelvic pain, abnormal uterine positioning, and a range of gynecological symptoms.
First described in the 1950s by gynecologists Allen and Masters, the syndrome was initially observed in women who experienced difficult or forceful deliveries. However, it's now known that other pelvic trauma—such as surgeries, repeated inflammation, or even invasive endometriosis—can also play a role.
How It Feels: The Symptoms
The symptoms of AMS often overlap with other pelvic disorders, including endometriosis, which makes it incredibly hard to diagnose:
• Chronic pelvic pain, especially on one side
• Pain during intercourse (dyspareunia)
• A feeling of “heaviness” or dragging in the pelvis
• Irregular bleeding or spotting
• Referred pain to the lower back or legs
• Pain made worse by certain movements or positions
These symptoms can persist even after surgery for endometriosis or fibroids, leaving women frustrated and wondering why their treatments didn’t work.
The Complication with Endometriosis
Endometriosis and Allen-Masters Syndrome can coexist—and when they do, they complicate each other.
Here’s how:
1. Mimicking or Masking Each Other
AMS pain can feel nearly identical to endometriosis. In laparoscopic surgery, torn ligaments or peritoneal defects might be mistaken for endometriosis—or missed entirely.
2. Worsening Each Other
The uterine instability caused by AMS may increase friction and inflammation in the pelvis, potentially exacerbating endometriosis symptoms. Likewise, the invasive nature of endometriosis can weaken uterine ligaments, creating a cycle of worsening pain.
3. Delaying Diagnosis
Because AMS isn’t well known, many surgeons focus only on excising visible endometriosis lesions. If ligament tears or pelvic instability aren’t also addressed, pain may persist despite "successful" surgery.
4. Influencing Fertility
While endometriosis is a known contributor to infertility, AMS can add to the challenge by altering the position of the uterus, interfering with sperm transport, or making embryo implantation more difficult.
Diagnosis: Why It’s Often Missed
AMS is best diagnosed through clinical examination and often requires a high index of suspicion from an experienced gynecologic surgeon. Imaging like MRI or ultrasound may not show ligament damage clearly. In some cases, laparoscopic exploration is the only way to confirm it, by observing a hypermobile uterus or peritoneal defects (like dimples or windows in the pelvic lining).
Unfortunately, many OB/GYNs are not trained to look for Allen-Masters Syndrome, which means it’s often overlooked—especially in patients already diagnosed with endometriosis.
What Can Be Done?
If AMS is suspected, the treatment may include:
• Pelvic physical therapy to support surrounding muscles and reduce pain
• Surgical repair or suspension of the damaged ligaments, often during laparoscopy
• Pain management strategies including nerve blocks or hormonal regulation if endometriosis is also present
• Lifestyle modifications to reduce strain on the pelvis (avoiding certain exercises, managing constipation, etc.)
The Takeaway
Allen-Masters Syndrome may not be as well-known as endometriosis, but its impact is very real—especially for women who feel like they've tried everything and still have no answers.
If you’ve had surgery for endometriosis and your pain persists, or if your symptoms don’t quite fit the typical endo profile, it might be worth asking your doctor about Allen-Masters Syndrome.
Women deserve full answers—not partial relief.
Sources & Further Reading
• Howard FM. (2003). Chronic Pelvic Pain. Obstetrics and Gynecology
• Vercellini P et al. (2006). Chronic pelvic pain: pathogenesis and therapy. Best Practice & Research Clinical Obstetrics and Gynaecology
• Tu FF et al. (2017). Beyond Endometriosis: Recognizing and Treating Comorbid Pelvic Pain Disorders. Clinical Obstetrics and Gynecology
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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.
