21 Myths and Facts About Endometriosis

Discover common myths about endometriosis debunked with factual information. Learn the truth about this chronic condition affecting women’s health. Stay informed and separate fact from fiction.

Endometriosis affects approximately 1 in 10 American women, making it a prevalent condition that is often misunderstood. It involves the abnormal growth of tissue similar to the uterine lining, known as the endometrium, outside of the uterus. These growths can lead to pain, scarring, and even infertility.

Unfortunately, a woman with endometriosis may go undiagnosed for up to seven years due to symptoms that resemble other common conditions like irritable bowel syndrome or pelvic inflammatory disease. Moreover, misconceptions surrounding the disease contribute to the hesitance of some women to seek medical assistance. To address concerns about painful periods or persistent pain in the lower back or pelvis, it is crucial to engage with your healthcare team for appropriate support and guidance.

Top 21 Myths and Facts About Endometriosis

Myth 1: Symptoms are merely attributed to heavy menstrual periods.

Some women with endometriosis mistakenly believe that their symptoms are typical for menstruation, and when they do seek help, they may be dismissed as overreacting to normal menstrual discomfort. However, the reality is that something far more significant is occurring beyond regular period cramps. One hypothesis suggests that the pain arises because even when endometrium-like tissue exists outside the uterus, it remains responsive to hormonal signals and releases chemicals that trigger inflammation and pain.

Throughout the menstrual cycle, this displaced endometrium-like tissue thickens and eventually undergoes bleeding. Unlike endometrial tissue within the uterus that can be expelled through the vagina each month, blood from the displaced tissue lacks an exit route. Consequently, it accumulates near the affected organs and tissues, causing irritation and inflammation. The outcome is persistent pain and, in some cases, the formation of adhesive scar tissue that can intertwine organs, resulting in discomfort during movement or sexual activity.

Myth 2: Endometriosis solely impacts the pelvic area.

While the pelvis, including the outer surface of the uterus, bladder, and fallopian tubes, is the most frequently affected region by endometriosis growths, it is important to recognize that endometriosis can develop anywhere in the body. In rare cases, endometrium-like tissue has even been identified in unexpected locations such as the lungs.

Myth 3: Endometriosis is universally characterized by pain.

Contrary to popular belief, not all individuals with endometriosis suffer from pain. In some cases, a woman may discover she has endometriosis only when investigating fertility challenges. It is worth noting that endometriosis is a leading cause of infertility in the United States and can elevate the risk of miscarriage and other pregnancy complications. However, it is encouraging to know that the majority of women with endometriosis eventually achieve the ability to conceive and have a child.

Myth 4: Endometriosis is preventable.

Due to the lack of a definitive understanding of the cause of endometriosis, there are no known methods to prevent its occurrence. However, taking certain measures to lower estrogen levels in the body can help decrease the risk, as estrogen can contribute to the growth of endometriosis and intensify symptoms. According to the US Office of Women’s Health, opting for a lower-estrogen birth control method, maintaining a healthy weight, and engaging in regular exercise are ways to reduce estrogen levels. While these steps may mitigate the risk, they do not guarantee the prevention of endometriosis.

Myth 5: Endometriosis always improves after menopause.

While endometriosis symptoms predominantly manifest during menstruation, some women continue to experience them even after the cessation of monthly cycles. This is because, after menopause, the ovaries still produce small quantities of estrogen.

Endometriosis growths may persistently respond to this hormone, leading to ongoing pain. Although many women witness an improvement in endometriosis symptoms after menopause, it is important to note that not all individuals experience relief. In some cases, women who have undergone menopause may opt for surgical interventions, such as the removal of endometriosis implants or adhesions, or even a hysterectomy and oophorectomy (ovary removal). However, it is crucial to recognize that these procedures do not guarantee pain control. Additionally, hormonal therapies appear to be less effective in managing endometriosis symptoms in women who have reached menopause.

Myth 6: Only older women can have endometriosis.

Endometriosis can develop in women of any age, including teenagers and young adults. While the condition is commonly diagnosed in individuals during their reproductive years, it is not limited to a specific age group.

Endometriosis can present itself shortly after a person’s first period and persist throughout their reproductive life. It is crucial to be aware of potential symptoms and seek medical attention regardless of age if there are concerns about endometriosis. Recognizing the misconception that only older women can have endometriosis is essential to ensure timely diagnosis and appropriate management for individuals of all age groups affected by this condition.

Myth 7: Endometriosis is just a women's issue.

This belief overlooks the broader impact of endometriosis beyond the individual experiencing it. While it is true that endometriosis primarily affects people assigned female at birth, it can have significant effects on their partners, families, and support networks.

The physical and emotional challenges posed by endometriosis can influence various aspects of a person’s life, including their relationships, mental well-being, and overall quality of life. Partners and family members may also be affected as they provide support and witness the impact of the condition on their loved ones.

Moreover, endometriosis can have socioeconomic implications, such as missed work or educational opportunities, financial burdens due to medical expenses, and the need for specialized healthcare.

Myth 8: Endometriosis is always accompanied by visible symptoms.

Endometriosis is a complex condition that can manifest differently in different individuals.

While some people with endometriosis may experience noticeable symptoms such as pelvic pain, painful periods, or infertility issues, others may have no apparent external signs or visible indications of the condition. In fact, there are cases where individuals may have extensive endometriosis with minimal or no symptoms at all. This makes it challenging to diagnose endometriosis based solely on visible manifestations.

It is important to note that the severity of symptoms does not necessarily correlate with the extent or stage of the condition. Some individuals with mild endometriosis may experience severe pain, while others with extensive endometriosis may have minimal discomfort.

Myth 9: Women with endometriosis cannot get pregnant.

While endometriosis can affect fertility, it does not mean that all women with endometriosis are unable to conceive. It is important to understand that fertility is variable and can differ among individuals with endometriosis.

Many women with the condition are able to conceive naturally or with medical interventions. With appropriate management, including fertility treatments and assisted reproductive technologies, such as in vitro fertilization (IVF), the chances of pregnancy can be improved for individuals with endometriosis.

Myth 10: Pregnancy and childbirth will cure endometriosis.

While it is true that some individuals may experience temporary relief from endometriosis symptoms during pregnancy, as the hormonal changes can suppress the growth of endometrial tissue, it does not provide a permanent cure for the underlying condition. Endometriosis is a chronic condition that involves the presence of endometrium-like tissue outside the uterus, and it requires appropriate management and treatment.

After childbirth, endometriosis can potentially resume or persist, as the hormonal fluctuations postpartum can trigger the regrowth of endometrial tissue and reactivation of symptoms. In some cases, symptoms may even worsen after pregnancy.

Myth 11: Surgery always cures endometriosis.

The myth suggests that surgery is always a guaranteed cure for endometriosis, implying that undergoing a surgical procedure will completely eliminate the condition and its symptoms. However, this is not entirely true.

Surgery can be an effective treatment option for endometriosis, particularly in cases where there are visible endometrial implants, adhesions, or cysts that can be excised or removed. The surgical procedure commonly used for endometriosis is called laparoscopy, where a thin tube with a camera is inserted through small incisions in the abdomen to visualize and address the affected areas.

While surgery can provide relief and improvement in symptoms for many individuals, it does not guarantee a permanent cure. Endometriosis is a chronic condition that involves the presence of endometrial-like tissue outside the uterus, and it can be challenging to completely eradicate all affected areas during surgery. Additionally, there is a possibility of disease recurrence or new endometrial growths developing over time.

Myth 12: Endometriosis is a rare condition.

Endometriosis is actually a common condition that affects a significant number of people, particularly those assigned female at birth.

Endometriosis is estimated to impact as many as 1 in 10 individuals assigned female at birth, which translates to a substantial portion of the population. It is one of the most prevalent gynecological disorders, affecting millions of people worldwide. Despite its prevalence, endometriosis often remains underdiagnosed or misdiagnosed due to various factors such as lack of awareness, symptom variability, and the normalization of menstrual pain.

Myth 13: Hysterectomy is a cure for endometriosis.

While a hysterectomy (removal of the uterus) can alleviate symptoms associated with endometriosis, it is not a cure. Endometriosis can still persist in other areas outside the uterus, and symptoms may continue.

Myth 14: Endometriosis is just a psychological condition.

Endometriosis is a medical condition with physical manifestations. It is not a psychological disorder. The pain and other symptoms experienced by women with endometriosis are real and not imagined.

Myth 15: Hormonal birth control always treats endometriosis effectively.

Hormonal birth control methods, such as oral contraceptives, can help manage endometriosis symptoms for some women. However, they may not be effective for everyone, and different treatments may be necessary to find the most suitable approach for each individual.

Myth 16: Endometriosis is caused by poor hygiene or sexual promiscuity.

Endometriosis is not caused by uncleanliness, sexual activity, or promiscuity. The exact cause of endometriosis is unknown, but it is believed to involve a combination of genetic, hormonal, and immune system factors.

Myth 17: Women with endometriosis should avoid exercise.

Exercise can actually be beneficial for women with endometriosis. It can help reduce pain, improve overall well-being, and promote healthy circulation. However, it’s important to listen to your body and avoid activities that worsen your symptoms.

Myth 18: Endometriosis is only diagnosed through invasive surgery.

While laparoscopic surgery is the gold standard for diagnosing endometriosis definitively, it is not always the first step. A thorough medical history, pelvic examination, and imaging techniques such as ultrasound or MRI can provide valuable information.

Myth 19: Endometriosis is a form of cancer.

Endometriosis is not a type of cancer and should not be confused with malignant or cancerous conditions.

Endometriosis is a chronic gynecological disorder where tissue similar to the lining of the uterus, called the endometrium, grows outside of the uterus. While endometriosis can cause pain, inflammation, and adhesions, it is a non-cancerous condition.

Cancer, on the other hand, is characterized by the uncontrolled growth and spread of abnormal cells in the body. Cancer cells invade nearby tissues and can metastasize to other organs. Unlike endometriosis, cancer poses significant health risks, including the potential for life-threatening complications.

Myth 20: Endometriosis is a temporary condition that goes away on its own.

Endometriosis is a chronic condition that typically persists unless it is actively managed or treated. It does not resolve spontaneously without intervention.

While the severity of symptoms can fluctuate over time, endometriosis does not typically disappear without treatment. It is a chronic condition that may require long-term management to alleviate symptoms, improve quality of life, and prevent further complications.

Myth 21: Endometriosis only affects the reproductive organs.

The myth suggests that endometriosis is limited to affecting only the reproductive organs, insinuating that the condition exclusively impacts the uterus, ovaries, fallopian tubes, and related structures. However, this is not entirely accurate. While endometriosis commonly affects these reproductive organs, it can also extend beyond them, potentially impacting other areas of the body.

In reality, endometriosis can be found in extrapelvic locations, such as the bowel, bladder, and even distant sites like the lungs or surgical scars. These endometrial-like growths can cause symptoms and complications specific to the affected organs. For example, endometriosis in the bowel can lead to gastrointestinal issues, including abdominal pain, bloating, and digestive disturbances.

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Pankaj Singhal, MD, MS, MHCM

Master Surgeon in Robotic Surgery

Dr. Pankaj Singhal, a globally recognized endometriosis surgeon, possesses over 25 years of expertise in laparoscopic excision surgery, enabling him to tackle even the most challenging endometriosis cases with confidence. Dr. Pankaj treats patients with diverse endometriosis-related conditions, ranging from ovarian endometriomas to severe deep infiltrating endometriosis that affects the bowels and other organs.

Dr. Pankaj prioritizes minimally invasive surgery and provides comprehensive personal care. Additionally, he is the owner and founder of New York Gynecology and Endometriosis (NYGE), and has dedicated his life to advocating for, respecting, and treating women suffering from this little-known disease. He is one of the few surgeons in the entire United States who have completed over 5,718 robot-assisted gynecologic surgeries.

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