What Do You Know About Endometriosis?
Medically Reviewed by Eric S. Surrey, MD
Colorado Center of Reproductive Medicine
Lone Tree, CO
By Sheryl Kraft
What is endometriosis?
Endometriosis is a chronic and painful disease affecting an estimated 1 in 10 women. Endometriosis occurs when tissue similar to that normally found in the uterus (endometrium) begins to grow outside of the uterus. These misplaced growths are called lesions. The lesions can grow on the ovaries, fallopian tubes and other areas around the pelvis. This may lead to long-term pelvic pain (during or between periods), pain with sex and other painful symptoms.
What causes endometriosis?
The exact cause of endometriosis is unknown. There are a few theories, the most common being retrograde menstruation. This is when menstrual blood, rather than flowing out of the body, backs up into the fallopian tubes, then enters and implants itself in the pelvic cavity. Endometrial cells continue to thicken and bleed with each menstrual cycle, because the cells still respond to changes in the female hormone estrogen.
What are the symptoms of endometriosis?
Endometriosis lesions may cause pain, which can occur during or between your periods. But pain can happen at other times throughout the month, too. You may feel pain in your abdomen, pelvic areas or lower back, and the level of pain varies from woman to woman. Some women with severe endometriosis may have little to no pain, while others with a mild case can experience intense pain.
A recent online survey titled "What Do You Know About Endometriosis?" was conducted in the US among 1,211 women over the age of 18 and 352 healthcare professionals (HCPs).* Among 260 women respondents who identified themselves as diagnosed with endometriosis, pain during or before periods was the most common symptom to lead them to see their HCP.
Other symptoms can include pain with sex, heavy menstrual bleeding, difficulty participating in day-to-day activities because of excessive pain, difficulty getting pregnant and pain with bowel movements or urination. The majority (81%) of more than 1,100 women respondents had heard of endometriosis. Among almost 700 respondents, only 29% were able to correctly identify all the painful symptoms associated with the disease, including painful urination or painful bowel movements. In addition, 42% of more than 850 women respondents were unaware that pain during sex may be associated with endometriosis.
What are the risks for endometriosis?
Endometriosis mostly affects women of reproductive age.
You may be at greater risk of developing endometriosis if you have risk factors such as:
- A first-degree female relative with the condition (this increases your risk six-fold)
- Beginning menstruation before age 11
- Short monthly cycles of less than 27 days
- Heavy cycles that last longer than seven days
Among approximately 260 women respondents who identified themselves as being diagnosed with endometriosis, 86% of respondents said the condition interferes with their day-to-day activities at least some of the time. When asked to identify common challenges associated with endometriosis, women respondents cited heavy menstrual bleeding as the most challenging problem created by endometriosis. Other challenges included not being able to participate in routine activities due to pain, missing work, painful sex and feeling alone after the diagnosis.
How is endometriosis diagnosed?
Getting a diagnosis can be difficult. Women with endometriosis can suffer for 6 to 10 years before proper diagnosis.
Among approximately 260 women respondents who identified themselves as diagnosed with endometriosis, pain during or before periods was the most common symptom to lead them to see their HCP. Nearly half (45%) of those respondents took four or more years to see an HCP about their symptoms, and about 28% took seven years or more.
Once those respondents with endometriosis saw an HCP, 72% had to see two or more HCPs before receiving an accurate diagnosis, and 24% saw four or more. Nearly a quarter (23%) of those respondents with endometriosis waited four or more years to receive a diagnosis.
The starting point is talking to your HCP about any symptoms you may be experiencing.
Before your appointment, arm yourself with knowledge. Gather your medical records and write down your symptoms. Websites such as MeinEndo.com offer helpful tools including an endometriosis checklist and symptom tracker, which can help you log how much pain you experience on an average day and how often; if there's a time of day when symptoms are worse or better; if specific activities worsen or relieve the pain; or if the pain comes and goes.
Don't downplay your symptoms or be afraid to ask questions. It can also be helpful to find an HCP who has experience treating endometriosis. He or she may recommend having a laparoscopy to remove a small sample of tissue for testing, known as biopsy, to confirm your diagnosis.
How is endometriosis treated?
Endometriosis cannot be cured, but it can be managed. There are available treatments, depending on your age and the severity of the condition, which include medication, surgery or both. Among survey participants diagnosed with endometriosis, women reported using a variety of treatments—medical, surgical and other—to manage their endometriosis symptoms.
Pain medications, like over-the-counter pain relievers or stronger prescription medications like opioids, are sometimes used to manage mild pain.
Hormone therapy may help slow the growth of endometrial tissue and prevent new lesions from growing. Birth control, progesterone, GnRH agonists and intrauterine devices can be used as part of a long-term care plan, but many are not specifically indicated for the treatment of endometriosis.
*This survey titled "What Do You Know about Endometriosis?" was conducted within the U.S. by HealthyWomen in partnership with AbbVie. It was conducted online from December 7, 2016 –February 6, 2017 among 1,211 women ages 18 and older and 352 HCPs. The numbers of non-HCP respondents to any given question were no less than 219 women ages 18 and older and totaled as many as 1,123 women ages 18 and older.