Endometriosis—sometimes simply called “endo”—is a common yet often misunderstood health condition affecting millions of women. Named after the endometrium, the tissue that lines the uterus, endometriosis happens when similar tissue grows outside of the uterus where it doesn’t belong.
This misplaced tissue can cause chronic pain, infertility, and a host of other problems. It is estimated that more than 11% of American women between ages 15 and 44 are affected, with the condition being most common in women in their 30s and 40s.
While endometriosis is not life-threatening, it can deeply impact a woman’s quality of life—and understanding it is the first step to managing it.
What Is Endometriosis?
In a typical menstrual cycle, the lining of the uterus builds up in preparation for pregnancy and sheds if no pregnancy occurs. In women with endometriosis, tissue similar to the uterine lining grows in places it shouldn’t, like the ovaries, fallopian tubes, outer surface of the uterus, and the tissues that support it.
Less commonly, endometrial-like tissue can be found on the:
- Vagina
- Cervix
- Vulva
- Bladder
- Bowel
- Rectum
In rare cases, endometriosis can even be found in distant areas like the lungs, brain, or skin!
Each month, just like the uterine lining, these misplaced growths respond to hormonal changes, swelling and bleeding. But unlike menstrual blood, the blood from these growths has nowhere to go, leading to inflammation, scarring, cysts, and significant pain.
Symptoms of Endometriosis
Pain is the hallmark symptom of endometriosis, but it can take many forms:
- Extremely painful menstrual cramps that may worsen over time
- Chronic pelvic and lower back pain
- Pain during or after sex, often described as a “deep” internal pain
- Intestinal pain
- Painful bowel movements or painful urination during periods
- (Rarely) Blood in urine or stool during menstruation
Other symptoms may include:
- Bleeding or spotting between periods
- Digestive issues like diarrhea, constipation, bloating, or nausea, especially during periods
- Infertility — endometriosis can make it harder to conceive, though many women with endometriosis do become pregnant.
It is important to note that the severity of symptoms doesn’t always correlate with the severity of the disease. Some women with severe endometriosis may have mild symptoms, while others with milder forms can experience debilitating pain.
What Causes Endometriosis?
The exact cause of endometriosis remains unknown, but several theories exist:
- Retrograde menstruation: Some menstrual blood flows backward through the fallopian tubes into the pelvic cavity instead of leaving the body.
- Genetic factors: Endometriosis tends to run in families, suggesting an inherited risk.
- Immune system problems: A malfunctioning immune system might fail to recognize and destroy endometrial-like tissue growing outside the uterus.
- Hormonal factors: Estrogen appears to fuel the growth of endometriosis, leading researchers to study the body’s hormonal regulation systems.
- Surgical spread: Endometrial tissue may accidentally attach to surgical sites, such as after a C-section or hysterectomy.
Who Is at Risk?
You may be at higher risk for developing endometriosis if you:
- Have never had children
- Experience periods lasting longer than seven days
- Have short menstrual cycles (27 days or fewer)
- Have a close relative (mother, sister, aunt) with endometriosis
- Have medical conditions that block menstrual flow
Diagnosing Endometriosis
Getting a diagnosis can be a frustrating journey, as symptoms often mimic other conditions like pelvic inflammatory disease or irritable bowel syndrome. To help diagnose endometriosis, doctors may use:
- Pelvic Exam: Feeling for large cysts or areas of scarring.
- Imaging Tests: Ultrasound (external or transvaginal) or MRI can help detect cysts linked to endometriosis.
- Medication Trials: Sometimes hormonal treatments are prescribed; if symptoms improve, endometriosis is suspected.
- Laparoscopy: The gold standard for diagnosis. A minimally invasive surgery that allows direct visualization and biopsy of endometrial growths.
Treatment Options for Endometriosis
While there’s currently no cure for endometriosis, many treatments can ease symptoms and improve quality of life.
Medication
- Hormonal Birth Control: Extended-cycle or continuous birth control pills, patches, or rings can reduce bleeding and ease pain.
- Hormonal IUDs: These can reduce pain and bleeding for several years.
- Gonadotropin-releasing Hormone (GnRH) Agonists: Temporarily stop menstrual cycles and lower estrogen levels, shrinking endometrial growths.
Medications can be highly effective but typically only work while you’re taking them.
Surgery
Surgical treatment is an option when:
- Hormonal treatments are ineffective
- Symptoms are severe
- Fertility issues are present
Surgeons can remove or destroy growths, scar tissue, and cysts during a laparoscopy. Sometimes surgery improves fertility and can significantly reduce pain.
Lifestyle and Alternative Therapies
Complementary approaches may also help:
- Pain medications like ibuprofen or naproxen
- Acupuncture and chiropractic care
- Herbal supplements like cinnamon twig, licorice root, or thiamine (vitamin B1)
- Omega-3 fatty acids may have anti-inflammatory effects
Always talk with your doctor before starting any alternative treatments.
Endometriosis and Fertility
Endometriosis is strongly linked with infertility. It is estimated that up to 50% of women with infertility may have endometriosis. The reasons are complex but may include:
- Blockage or distortion of reproductive anatomy
- Changes in the immune system
- Disruptions to the endometrial lining needed for implantation
If you’re struggling to conceive, treatments like surgery to remove growths or fertility treatments such as IVF (in vitro fertilization) can help.
Endometriosis and Other Health Risks
Women with endometriosis may have a higher risk of other health conditions, including:
- Autoimmune disorders (e.g., lupus, multiple sclerosis)
- Chronic fatigue syndrome
- Fibromyalgia
- Certain cancers, such as ovarian and breast cancer
- Allergies, asthma, and chemical sensitivities
Understanding these links can help you and your doctor manage your health more proactively.
Can You Prevent Endometriosis?
There is no sure way to prevent endometriosis. However, you may lower your risk by:
- Using low-dose estrogen birth control methods
- Exercising regularly (over four hours a week)
- Maintaining a healthy body fat percentage
- Limiting alcohol and caffeine intake, which can raise estrogen levels
Final Thoughts
Endometriosis is a chronic condition, but it’s not a hopeless one. With early diagnosis, personalized treatment, and good medical support, many women are able to find relief from symptoms, preserve their fertility, and live full, active lives.
If you’re experiencing symptoms or struggling with infertility, don’t hesitate to reach out to your healthcare provider.
You are not alone—and help is available.