Endometriosis: Exploring the Myths and Uncovering the Facts

In recent years, renewed or perhaps new attention to the causes, prevalence, and challenges women with endometriosis face has helped provide a better understanding of care and treatment options. Statistics provided by the U.S. Department of Health and Human Services Office on Women's Health suggest more than 11% of American women ages 15 to 44 live with endometriosis.

Key takeaways:
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    Statistics provided by the U.S. Department of Health and Human Services Office on Women's Health suggest more than 11% of American women ages 15 to 44 live with endometriosis.
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    Researchers suggest women will suffer from untreated symptoms for an average of 10 years before receiving an accurate diagnosis.
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    Currently, medical research has not found a precise cause for endometriosis; therefore, there is also no known prevention.
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    There is no single cure for endometriosis, including surgical procedures.
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    Most researchers believe between 60 and 70% of women with endometriosis are fertile.
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    Although there is no known cure for endometriosis, treatment is possible.

What is endometriosis?

Endometriosis is a condition that primarily affects the female pelvic region. Although in rare circumstances, endometrium (the tissue that grows outside the uterus) may be found in other body areas, it primarily grows on the outside of pelvic organs such as the uterus, ovaries, and fallopian tubes.

Endometrial tissue is similar to that which grows inside the uterus, and therefore it acts as uterine tissues would. With each monthly cycle, endometrial tissues thicken before breaking down and bleeding. Unlike uterine tissues, the endometrial tissue has no way to exit the body, which can lead to irritation, scarring, and adhesions on surrounding tissues and organs.

Cysts may form when endometrial tissue grows on or adheres to the ovaries. Endometriosis is generally painful (sometimes severely so) and can lead to abnormal menstruation, heavy cramping, and other pelvic health challenges.

Unfortunately, despite being one of the most prevalent gynecological diseases, endometriosis often goes undiagnosed or misdiagnosed for many years. Researchers suggest women will suffer from untreated symptoms for an average of 10 years before receiving an accurate diagnosis.

Endometriosis myths and misconceptions

Several common myths and misconceptions are key to why many women experience challenges receiving an accurate diagnosis and effective endometriosis treatment.

1. Myth: Once I start menopause, endometriosis will go away

Menopause generally signals a change in hormone levels and, for the majority of women, a time when monthly menstruation pauses. Although it would make sense that a condition worsened and associated with the monthly menstrual cycle would also pause (or even "go away") if one monthly cycle stops, this is not the case. During menopause, the ovaries continue to produce estrogen; therefore, endometrial tissue may continue to respond to estrogen levels, leading to familiar endometriosis symptoms.

2. Myth: After pregnancy, endometriosis goes away

Fortunately, the misconception that pregnancy will “cure” endometriosis is fading. Although pregnancy may temporarily pause many of the symptoms of endometriosis, it will not cure or stop them from returning after childbirth. Some women find it possible to delay the return of symptoms by breastfeeding, but once one's menstrual cycle returns, so will symptoms.

3. Myth: I (or my daughter is) am too young to have endometriosis

The unfortunate myth that endometriosis is linked to age has caused many teens and young women to suffer from painful endometriosis symptoms for years before finding relief. For many years, medical community members did not "look for" endometriosis in young women and teens.

It was not until the late 80s and early 90s that gynecologists began to study extreme pelvic pain in adolescents whose symptoms were not relieved using oral contraceptives or non-steroidal anti-inflammatory drugs. Studies during this time showed the prevalence of endometriosis in teens and young women as high as 70%.

4. Myth: Endometriosis can be prevented

Currently, medical research has not found a precise cause for endometriosis; therefore, there is also no known prevention. Some methods, such as medication or certain surgical interventions that lower estrogen levels, may reduce your risk; however, it is not yet possible to entirely prevent endometriosis.

The most common body areas where endometriosis growths occur are within the pelvic region, including on the ovaries, bladder, uterus, and fallopian tubes. However, it can occur anywhere in the body.

6. Myth: Surgical procedures such as a hysterectomy will “cure” endometriosis

There is no single cure for endometriosis, including surgical procedures. However, procedures such as a hysterectomy aim to help manage disease symptoms and remove existing endometriotic tissues and scar tissues. It does not address or cure the underlying cause of the disease.

7. Myth: Endometriosis leads to infertility

Many women believe having endometriosis means they cannot naturally conceive. This is often not the case. Many women with endometriosis go on to have healthy, natural pregnancies. Sadly, no reliable statistics are available to show what percentage of women with endometriosis experience fertility problems. As a result, it is difficult to apply a specific number to the likelihood that women with endometriosis experience greater difficulty conceiving than those without. Most researchers believe between 60 and 70% of women with endometriosis are fertile, but again, there is limited data to confirm these figures.

8. Myth: Being sexually active, using tampons, or douching will cause endometriosis

No scientific evidence links tampons, sexual activity, or douching to endometriosis. However, all of the above may lead to a condition called endometritis which occurs when the lining of the uterus becomes inflamed.

A couple of important endometriosis facts

Endometriosis is a real medical condition not something "in your head." The pain women with endometriosis experience often far exceed what most would call normal period pain. Women with endometriosis may struggle to manage emotional challenges related to living with endometriosis; however, these symptoms result from the illness's impacts rather than the cause of or a symptom of it.

Diagnosing endometriosis

It is also important to remember that diagnosing endometriosis is not a one-step process. If your provider suspects your symptoms may suggest endometriosis, they may suggest one or more diagnostic procedures to evaluate your symptoms and provide an accurate diagnosis. There is no blood test used to detect endometriosis but diagnostic tools that are often used include:

  • Biopsy
  • Ultrasound
  • MRI
  • Laparoscopy

These tests and a comprehensive physical exam can help rule out other pelvic health conditions that may cause similar symptoms, including pelvic inflammatory disease (PID), uterine fibroids, bladder infection, polycystic ovary syndrome, and irritable bowel syndrome. With an accurate diagnosis, it is possible to develop a treatment plan to help you manage your symptoms and reduce the impact endometriosis has on your emotional, physical, sexual, and reproductive health.

Endometriosis is more common than one might think. However, it often goes undiagnosed for many years. Although there is no cure for it, several highly effective treatment options can reduce the impact of your symptoms. Suppose you believe monthly period pain might be endometriosis. In that case, it is essential to reach out to your provider to begin working towards a diagnosis and to learn more about the options for symptom management.