The average woman with endometriosis waits 6 to 10 years from first symptoms to diagnosis, even though the condition affects roughly 10 percent of reproductive-age women — about 6.5 million in the United States alone. Pain that disrupts work, school, or relationships is not a normal part of menstruation, yet stigma and clinical inertia continue to delay recognition. Modern imaging and earlier suspicion are slowly improving things, and treatment options have expanded substantially over the past decade.
What Endometriosis Is and How Common It Is
Endometriosis is a chronic inflammatory disease in which tissue similar to the endometrium (the lining of the uterus) grows outside the uterus. Common locations include the ovaries (where it can form cysts called endometriomas), fallopian tubes, pelvic peritoneum, bowel, bladder, and ligaments supporting the uterus. These deposits respond to hormonal cycling, bleeding internally and triggering inflammation, scarring, and adhesions.
According to the American College of Obstetricians and Gynecologists, endometriosis affects approximately 10 percent of women of reproductive age, with prevalence rising to 35 to 50 percent among women with infertility or chronic pelvic pain. The NICHD estimates over 11 percent of US women aged 15 to 44 may be affected. For broader context, see our medical conditions resource.
Causes and Risk Factors
The exact cause is not fully understood. Theories include retrograde menstruation (menstrual flow traveling backward through the fallopian tubes), coelomic metaplasia, lymphatic spread, immune dysfunction, and stem cell-related mechanisms. Most experts now consider endometriosis a multifactorial disease involving genetic, hormonal, and immunologic components.
Risk factors include family history (first-degree relatives have a 5- to 7-fold increased risk), early menarche (before age 11), short menstrual cycles, heavy or prolonged menstruation, nulliparity, low body mass index, and Mullerian anomalies. According to research summarized in Fertility and Sterility, certain genetic variants and immune patterns are reproducibly associated, supporting the heritability seen clinically.
Symptoms
The hallmark symptom is pain. Severe menstrual cramps that worsen over time, deep pelvic pain during or after intercourse (dyspareunia), pain with bowel movements or urination especially during periods, and chronic pelvic pain between periods are all common. The intensity often does not correlate with disease extent — women with mild disease can have severe pain, and vice versa.
Beyond pain, endometriosis frequently causes heavy menstrual bleeding, abnormal bleeding between periods, gastrointestinal symptoms (bloating, nausea, diarrhea, or constipation that worsens with menses), urinary symptoms, fatigue, and infertility. About 30 to 50 percent of women with endometriosis have difficulty conceiving — a major reason it is often first identified during fertility evaluation, as discussed in our female infertility guide.
How Endometriosis Is Diagnosed
Diagnosis begins with a thorough history, focusing on pain pattern, severity, response to NSAIDs and hormonal contraception, and impact on quality of life. Pelvic exam may reveal tenderness, nodularity in the cul-de-sac, or a fixed, retroverted uterus, but a normal exam does not rule out endometriosis.
Transvaginal ultrasound is the first-line imaging test. It reliably identifies endometriomas and, with skilled operators, can detect deep infiltrating endometriosis. MRI is increasingly used for surgical planning and assessment of bowel or bladder involvement. According to a 2022 Lancet review, the longstanding requirement for laparoscopic confirmation has shifted: ACOG and the European Society of Human Reproduction and Embryology now support clinical diagnosis and empiric treatment in many cases without surgery.
Laparoscopy with biopsy remains the only way to definitively confirm and stage the disease and is appropriate when imaging suggests advanced disease, when symptoms persist despite medical therapy, or when fertility is a concern. CA-125 may be elevated but lacks sensitivity and specificity for diagnosis.
Treatment Options
Treatment depends on symptoms, age, fertility goals, and disease severity. NSAIDs are first-line for mild pain. Hormonal suppression of cyclic ovulation reduces lesion activity and pain in most women. Combined oral contraceptives, progestin-only options (norethindrone acetate, dienogest), and the levonorgestrel-releasing IUD are commonly used.
GnRH agonists (leuprolide) and the newer GnRH antagonists (elagolix, relugolix combination) suppress ovarian estrogen more profoundly. Elagolix was approved by the FDA in 2018 as the first oral GnRH antagonist for endometriosis pain, and relugolix combination therapy followed in 2022. These work but require add-back hormone therapy or duration limits to mitigate bone loss.
Surgery — typically laparoscopic excision or ablation of lesions — improves pain and fertility outcomes. Excision generally produces better long-term results than ablation, per a Cochrane review. Hysterectomy with or without ovary removal is considered for women with completed childbearing and severe symptoms unresponsive to other therapies, though endometriosis can recur if implants are not also excised. Detailed surgical management is covered separately. Pelvic floor physical therapy, acupuncture, dietary modifications (anti-inflammatory pattern), and pain psychology can complement medical and surgical care.
When to See a Doctor
Schedule a visit for menstrual pain that limits daily activities, requires missing school or work, or does not respond to standard NSAID dosing. Pelvic pain between periods, painful intercourse, painful bowel movements during menses, or new gastrointestinal or urinary symptoms cycling with periods all warrant evaluation. Difficulty conceiving after 12 months of unprotected intercourse (or 6 months for women over 35) is another reason for assessment.
Women with a strong family history of endometriosis or symptoms beginning in adolescence benefit from early evaluation — the ACOG Committee Opinion on adolescent dysmenorrhea emphasizes that severe primary dysmenorrhea unresponsive to combined oral contraceptives and NSAIDs should prompt consideration of endometriosis.
When to seek emergency care: Call 911 or go to the nearest emergency room if you experience sudden severe pelvic or abdominal pain (possible ovarian torsion or ruptured endometrioma), heavy vaginal bleeding causing dizziness or fainting, signs of bowel obstruction, or severe pain with fever — these can indicate complications requiring urgent intervention.
Frequently Asked Questions
Can you get pregnant with endometriosis?
Yes, though endometriosis can reduce fertility. Roughly 50 to 70 percent of women with endometriosis conceive without intervention. For those who cannot, options include surgical treatment of lesions, ovulation induction, IUI, and IVF. Success rates vary by age, disease stage, and other factors. See our female infertility guide for a deeper overview.
Does endometriosis go away after menopause?
Symptoms often improve after menopause as estrogen declines, but endometriosis can persist or recur, especially in women on systemic hormone therapy. Endometriomas occasionally undergo malignant transformation, so persistent or new postmenopausal symptoms warrant evaluation.
Are diet and lifestyle changes helpful?
Anti-inflammatory dietary patterns, omega-3 intake, regular moderate exercise, and stress reduction may modestly improve pain. Evidence is observational rather than from large randomized trials, but these approaches support overall health alongside medical treatment. They are unlikely to replace hormonal or surgical therapy in moderate to severe disease.
How is endometriosis different from adenomyosis?
Endometriosis is endometrial-like tissue outside the uterus; adenomyosis is endometrial tissue within the muscle wall of the uterus. They commonly coexist, share many symptoms, but are distinct conditions with somewhat different treatments and imaging features.
Living With Endometriosis
Endometriosis is chronic, but it is not untreatable. Most women find meaningful relief through a combination of hormonal suppression, targeted surgery when needed, and supportive care. Working with a clinician familiar with current endometriosis management — ideally a gynecologist with specific expertise — improves outcomes significantly. Tracking pain patterns, bleeding, and treatment response over time gives both you and your clinician useful information for adjusting therapy.