Endometriosis: Symptoms, Causes & Treatment Guide

What Is Endometriosis?

Endometriosis is a chronic inflammatory condition where tissue similar to the uterine lining (endometrium) grows outside the uterus—typically on the ovaries, fallopian tubes, and pelvic lining. This misplaced tissue responds to hormonal changes during the menstrual cycle, causing inflammation, pain, and scarring that can significantly impact quality of life and fertility.

Endometriosis is one of the most common gynecological conditions, affecting approximately 10% of women of reproductive age worldwide. This translates to roughly 190 million people globally living with this condition. Despite its prevalence, endometriosis remains chronically underdiagnosed and misunderstood, with an average delay of 7-10 years between symptom onset and proper diagnosis.

The condition occurs when endometrial-like tissue—which normally lines the inside of the uterus—grows in locations where it doesn't belong. Unlike normal endometrial tissue that sheds during menstruation and exits the body, this misplaced tissue has no way to escape. Each month, it thickens, breaks down, and bleeds in response to hormonal fluctuations, but because it's trapped, it causes inflammation, irritation, and eventually the formation of scar tissue and adhesions.

The most common sites for endometriosis include the ovaries (where it can form cysts called endometriomas or "chocolate cysts"), the fallopian tubes, the outer surface of the uterus, the tissue lining the pelvis (peritoneum), and the area between the uterus and rectum. In more severe cases, endometriosis can spread to the bowel, bladder, and rarely to distant sites like the lungs or diaphragm.

Types of Endometriosis

Medical professionals classify endometriosis into three main types based on location and severity, which helps guide treatment decisions:

• Superficial peritoneal endometriosis: The most common and mildest form, where lesions appear on the peritoneum (the membrane lining the pelvic cavity). These lesions are typically flat and can vary in color from clear to dark brown.
• Ovarian endometriomas: Dark, fluid-filled cysts that form on the ovaries, often called "chocolate cysts" because of their characteristic dark brown color from old blood. These can range from small lesions to large cysts several centimeters in diameter.
• Deep infiltrating endometriosis (DIE): The most severe form, where lesions penetrate more than 5mm beneath the peritoneal surface. DIE can affect the bowel, bladder, ureters, and other pelvic structures, causing significant pain and potentially serious complications.

Additionally, adenomyosis—a related condition where endometrial tissue grows into the muscular wall of the uterus itself—often coexists with endometriosis and can cause similar symptoms like heavy bleeding and pelvic pain.

What Causes Endometriosis?

The exact cause of endometriosis remains unknown, but researchers have identified several theories and contributing factors:

Retrograde menstruation is the most widely accepted theory. During menstruation, some blood containing endometrial cells flows backward through the fallopian tubes into the pelvic cavity instead of leaving the body. These cells then implant and grow. However, this occurs in 90% of women, yet only about 10% develop endometriosis, suggesting additional factors are involved.

Immune system dysfunction may play a role. In healthy women, the immune system identifies and destroys misplaced endometrial cells. Women with endometriosis may have immune abnormalities that allow these cells to survive and grow outside the uterus.

Genetic factors significantly influence risk. Women with a first-degree relative (mother, sister, or daughter) with endometriosis have a 7-10 times higher risk of developing the condition. Researchers have identified several genetic variants associated with increased susceptibility.

Hormonal factors are clearly involved, as endometriosis is estrogen-dependent. The condition is rare before puberty and typically improves after menopause when estrogen levels drop. Abnormalities in local estrogen production and metabolism within endometriosis lesions may contribute to their growth and persistence.

What Are the Symptoms of Endometriosis?

The hallmark symptoms of endometriosis include severe menstrual cramps (dysmenorrhea), chronic pelvic pain, pain during or after sex (dyspareunia), and heavy or irregular periods. Many women also experience fatigue, bowel and bladder symptoms, and difficulty conceiving. Symptoms often worsen progressively over time without treatment.

Endometriosis symptoms vary widely between individuals. Some women experience debilitating symptoms while others have minimal discomfort despite having extensive disease. Conversely, women with mild endometriosis can sometimes experience severe symptoms. This disconnect between disease extent and symptom severity makes diagnosis challenging and means that severity of symptoms doesn't necessarily indicate how much endometriosis is present.

The pain associated with endometriosis is typically described as more severe than normal menstrual cramps, often described as "stabbing," "sharp," or "burning." Unlike typical period pain that responds to over-the-counter medications, endometriosis pain frequently requires stronger treatments and may occur at times other than menstruation. The cyclical nature of hormones means pain often fluctuates throughout the month, typically worsening around menstruation and ovulation.

Understanding and tracking your symptoms is crucial for diagnosis and treatment planning. Many healthcare providers recommend keeping a symptom diary that records pain levels, timing, triggers, and how symptoms affect daily activities. This information helps distinguish endometriosis from other conditions and guides treatment decisions.

Pain Symptoms

Pain is the most common and often most debilitating symptom of endometriosis. The character, location, and timing of pain can provide important diagnostic clues:

• Dysmenorrhea (painful periods): Severe cramping that typically begins 1-2 days before menstruation and continues throughout. Unlike normal menstrual cramps, endometriosis pain often starts earlier, lasts longer, and may not respond to standard pain relievers.
• Chronic pelvic pain: Persistent pain in the lower abdomen and pelvis that may occur daily, not just during menstruation. Many women describe a constant dull ache that worsens during certain activities or times of the month.
• Dyspareunia (painful sex): Deep pain during or after sexual intercourse is common, particularly with penetration. This symptom is especially associated with deep infiltrating endometriosis affecting the area behind the uterus.
• Ovulation pain: Sharp or cramping pain mid-cycle when an egg is released. While some ovulation discomfort is normal, women with endometriosis often experience more intense pain.
• Lower back pain: Pain that radiates to the lower back and even down the thighs is common, especially during menstruation.

Menstrual and Reproductive Symptoms

Endometriosis frequently affects menstrual patterns and reproductive function:

• Heavy menstrual bleeding (menorrhagia): Periods that are heavier than normal, requiring frequent pad or tampon changes, or lasting longer than 7 days.
• Irregular periods: Unpredictable cycle lengths, spotting between periods, or breakthrough bleeding.
• Infertility: Approximately 30-50% of women with endometriosis experience difficulty conceiving. Endometriosis can affect fertility through multiple mechanisms including distorted anatomy, inflammation affecting egg quality, and impaired implantation.
• Premenstrual symptoms: Bloating, breast tenderness, and mood changes that are more severe than typical PMS.

Bowel and Bladder Symptoms

When endometriosis affects the bowel or bladder, it can cause symptoms that mimic other conditions:

• Painful bowel movements: Especially during menstruation, sometimes described as "glass shards" sensation.
• Diarrhea, constipation, or alternating between both: Often worse during periods.
• Bloating: Persistent abdominal distension, sometimes called "endo belly."
• Rectal bleeding: During menstruation in cases of bowel endometriosis.
• Painful urination (dysuria): Especially during menstruation.
• Urinary frequency or urgency: Needing to urinate more often.
• Blood in urine: During menstruation in cases of bladder endometriosis.

Other Symptoms

Endometriosis often causes systemic symptoms that significantly impact daily life:

• Fatigue: Chronic exhaustion that doesn't improve with rest is extremely common and often underestimated. The inflammatory nature of endometriosis contributes to persistent fatigue.
• Nausea: Particularly during painful episodes or menstruation.
• Leg pain: Pain radiating down the legs, especially during menstruation.
• Depression and anxiety: Living with chronic pain significantly impacts mental health. Studies show women with endometriosis have higher rates of mood disorders.

How Is Endometriosis Diagnosed?

Endometriosis diagnosis typically involves a detailed medical history, pelvic examination, and imaging studies such as transvaginal ultrasound or MRI. However, the definitive diagnosis requires laparoscopy—a minimally invasive surgical procedure that allows direct visualization and biopsy of endometriosis lesions. On average, diagnosis takes 7-10 years from symptom onset.

Diagnosing endometriosis remains challenging because symptoms overlap with many other conditions, including irritable bowel syndrome, pelvic inflammatory disease, ovarian cysts, and primary dysmenorrhea. The lack of a simple, non-invasive diagnostic test means many women experience years of symptoms before receiving an accurate diagnosis. This diagnostic delay is one of the most significant barriers to effective treatment.

A systematic approach to diagnosis involves several steps, beginning with a thorough evaluation of symptoms and medical history. Healthcare providers will ask detailed questions about pain patterns, menstrual history, bowel and bladder symptoms, sexual function, and family history of endometriosis. Describing your symptoms accurately and completely is essential—don't minimize your pain or assume it's "normal."

Physical examination provides important clues but cannot definitively diagnose endometriosis. During a pelvic exam, your healthcare provider may detect tenderness, nodules in the area behind the uterus (uterosacral ligaments), fixed or immobile organs due to adhesions, or enlarged ovaries suggesting endometriomas. However, a normal examination does not rule out endometriosis.

Imaging Studies

Non-invasive imaging has improved significantly and can identify many cases of endometriosis without surgery:

Transvaginal ultrasound is typically the first imaging study performed. It's readily available, relatively inexpensive, and excellent for detecting ovarian endometriomas, which appear as characteristic "ground glass" cysts. Advanced ultrasound techniques performed by experienced sonographers can also identify deep infiltrating endometriosis affecting the bowel, bladder, and other structures. However, superficial endometriosis is often not visible on ultrasound.

Magnetic resonance imaging (MRI) provides more detailed images and is particularly useful for surgical planning. MRI can identify deep infiltrating endometriosis, including bowel and bladder involvement, and helps surgeons understand the full extent of disease before operating. MRI is also helpful when ultrasound findings are inconclusive.

Importantly, normal imaging does not exclude endometriosis. Superficial peritoneal endometriosis—the most common type—is often not visible on any imaging study. If symptoms strongly suggest endometriosis but imaging is normal, further evaluation including diagnostic laparoscopy may still be warranted.

Laparoscopy: The Gold Standard

Laparoscopy remains the only way to definitively diagnose endometriosis. This minimally invasive surgical procedure involves inserting a thin camera (laparoscope) through a small incision in the abdomen to directly visualize the pelvic organs. During laparoscopy, the surgeon can:

• Identify endometriosis lesions: Lesions vary in appearance from clear or red (early) to dark brown or black (older "powder burn" lesions) to white (fibrotic). An experienced surgeon recognizes these various presentations.
• Take biopsies: Tissue samples confirm the diagnosis histologically—showing endometrial-type glands and stroma outside the uterus.
• Stage the disease: The revised American Society for Reproductive Medicine (rASRM) classification system stages endometriosis from I (minimal) to IV (severe) based on location, extent, and depth of lesions and presence of adhesions.
• Treat endometriosis: Surgeons often perform "see and treat" procedures, removing or destroying endometriosis lesions during the same operation used for diagnosis.

How Is Endometriosis Treated?

Endometriosis treatment aims to relieve pain, slow disease progression, and preserve or restore fertility. Options include pain medications (NSAIDs), hormonal therapies (birth control pills, progestins, GnRH agonists), and surgery to remove endometriosis lesions. Treatment is individualized based on symptom severity, desire for pregnancy, and patient preferences. Most women require a combination of approaches.

There is currently no cure for endometriosis, but effective treatments can significantly improve symptoms and quality of life. Treatment planning should be individualized, taking into account the severity of symptoms, the desire for current or future pregnancy, age, overall health, and personal preferences. Most women benefit from a multidisciplinary approach that may include gynecologists, pain specialists, mental health providers, and fertility specialists.

The goals of treatment vary depending on the individual situation. For some women, the primary goal is pain relief; for others, it's preserving or restoring fertility. Understanding your treatment options and their potential benefits and risks allows you to make informed decisions in partnership with your healthcare team.

Pain Management

Pain relief is often the first treatment priority. Several approaches can help:

Nonsteroidal anti-inflammatory drugs (NSAIDs) like ibuprofen and naproxen reduce inflammation and can provide relief for mild to moderate pain. They work best when taken at the first sign of pain—before symptoms become severe—and continued regularly during painful periods. NSAIDs should be taken with food to protect the stomach, and long-term use should be monitored due to potential gastrointestinal, cardiovascular, and kidney risks.

Acetaminophen (paracetamol) may provide additional pain relief and can be combined with NSAIDs. While effective for mild pain, it doesn't have anti-inflammatory properties.

For more severe pain not controlled by these medications, prescription options include prescription-strength NSAIDs, neuropathic pain medications like gabapentin or pregabalin (particularly helpful for nerve-related pain), and in some cases, carefully monitored use of opioid medications for acute flares. However, long-term opioid use is generally avoided due to concerns about dependence and the availability of other effective options.

Hormonal Treatments

Because endometriosis is estrogen-dependent, treatments that reduce estrogen levels or counteract its effects can slow disease progression and reduce symptoms:

Combined hormonal contraceptives (pills, patch, or vaginal ring) containing estrogen and progestin can be used continuously to skip periods entirely, reducing pain for many women. By preventing ovulation and reducing menstrual flow, they limit the cyclical hormonal stimulation of endometriosis lesions.

Progestin-only treatments are highly effective and come in various forms including pills (norethindrone, dienogest), injections (medroxyprogesterone), implants (etonogestrel), and intrauterine devices (levonorgestrel IUD). Progestins suppress endometrial growth, reduce inflammation, and can significantly reduce pain. The hormonal IUD (such as Mirena) is particularly effective, providing local progestin delivery with fewer systemic side effects.

GnRH agonists and antagonists (gonadotropin-releasing hormone medications like leuprolide, goserelin, or elagolix) create a temporary, reversible menopausal state by suppressing estrogen production. They're highly effective for pain relief but can cause menopausal symptoms like hot flashes, bone loss, and mood changes. "Add-back therapy" with low-dose estrogen and progestin can minimize these side effects while maintaining treatment benefits.

Aromatase inhibitors (letrozole, anastrozole) block estrogen production and may be used in combination with other hormonal treatments for refractory cases. They're particularly useful for postmenopausal endometriosis or cases that haven't responded to other hormonal treatments.

Surgical Treatment

Surgery aims to remove or destroy endometriosis lesions while preserving healthy tissue and fertility when desired. Surgical approaches include:

Laparoscopic surgery is the preferred approach for most cases. Using small incisions and specialized instruments, surgeons can remove (excise) or destroy (ablate) endometriosis lesions, drain endometriomas, divide adhesions, and restore normal anatomy. Excision surgery—cutting out lesions completely—is generally preferred over ablation (burning the surface) as it removes all abnormal tissue and has lower recurrence rates. A skilled endometriosis surgeon can remove deep infiltrating lesions while preserving vital structures.

Hysterectomy (removal of the uterus) with or without oophorectomy (removal of ovaries) may be considered for women with severe symptoms who haven't responded to other treatments and don't desire future pregnancy. Removing the ovaries eliminates the body's main estrogen source, which typically resolves symptoms but causes immediate menopause. Many surgeons recommend keeping at least one ovary if possible to avoid premature menopause, especially in younger women.

It's important to understand that surgery is not a permanent cure—endometriosis can recur, with recurrence rates of approximately 20-40% within five years. Combining surgery with hormonal suppression afterward can help prevent recurrence.

Can You Get Pregnant with Endometriosis?

Yes, many women with endometriosis can get pregnant, though it may require more time or assistance. While 30-50% of women with endometriosis experience infertility, this also means 50-70% conceive successfully. Treatment options include surgical removal of endometriosis, fertility medications, intrauterine insemination (IUI), and in vitro fertilization (IVF), with success rates varying based on disease severity and age.

The relationship between endometriosis and fertility is complex. Endometriosis can affect fertility through multiple mechanisms: distorted pelvic anatomy from adhesions and scarring, inflammation that impairs egg quality and embryo implantation, blocked or damaged fallopian tubes, and altered hormonal and immune environments. The severity of these effects varies considerably between individuals.

If you have endometriosis and want to become pregnant, early consultation with a fertility specialist is advisable. Age is a significant factor—fertility naturally declines with age, and this decline accelerates in women with endometriosis. For women over 35 or those with known fertility-affecting endometriosis, waiting too long to seek treatment may reduce success rates.

Fertility Treatment Options

Several approaches can help women with endometriosis conceive:

Surgical treatment can improve fertility, particularly for women with endometriomas or adhesions distorting the reproductive organs. Studies show that laparoscopic excision of endometriosis can increase monthly pregnancy rates by 30-40% in women with mild to moderate disease. However, surgery on the ovaries for endometriomas must be performed carefully to preserve ovarian reserve (egg supply).

Ovulation induction with medications like clomiphene or letrozole, combined with timed intercourse or intrauterine insemination (IUI), may be appropriate for women with mild endometriosis, open fallopian tubes, and normal sperm parameters. Success rates are somewhat lower than for women without endometriosis.

In vitro fertilization (IVF) is often the most effective option, particularly for moderate to severe endometriosis, blocked tubes, or when other treatments have failed. IVF bypasses many of the fertility-impairing effects of endometriosis. Success rates for women with endometriosis undergoing IVF are approximately 40-50% per cycle for women under 35, though rates decrease with age and more severe disease.

Egg freezing may be recommended for young women with significant endometriosis who aren't ready for pregnancy but want to preserve their fertility options for the future. This is particularly relevant given that endometriosis can progressively damage ovarian reserve over time.

What Self-Care Strategies Help Manage Endometriosis?

Self-care strategies for endometriosis include heat therapy for pain relief, regular exercise (especially low-impact activities), anti-inflammatory diet modifications, stress management techniques, adequate sleep, and tracking symptoms to identify patterns and triggers. These approaches complement medical treatment and can significantly improve quality of life.

While medical treatment is essential for managing endometriosis, lifestyle modifications and self-care practices can provide additional relief and improve overall wellbeing. These strategies don't replace professional treatment but work alongside it to optimize outcomes. Many women find that a combination of medical management and self-care gives them the best quality of life.

Pain Relief at Home

Heat therapy is one of the most effective home remedies for endometriosis pain. Applying a heating pad or hot water bottle to the lower abdomen or back can relax muscle contractions, improve blood flow, and provide significant relief. Research shows heat therapy can be as effective as over-the-counter pain medications for many women. Use a protective layer between the heat source and skin and limit applications to 20 minutes at a time.

Warm baths can provide similar benefits while also promoting relaxation. Adding Epsom salts may enhance muscle relaxation. Some women find that gentle stretching in a warm bath helps relieve pelvic floor tension.

TENS units (transcutaneous electrical nerve stimulation) deliver mild electrical impulses that can interfere with pain signals. While research on TENS for endometriosis specifically is limited, many women report it helps manage menstrual and pelvic pain.

Exercise and Movement

Regular physical activity provides multiple benefits for women with endometriosis:

• Pain reduction: Exercise releases endorphins—the body's natural painkillers—and can reduce inflammation.
• Improved circulation: Better blood flow may help reduce pelvic congestion and pain.
• Stress relief: Physical activity reduces stress hormones and improves mood.
• Overall health: Exercise supports cardiovascular health, weight management, and energy levels.

Low-impact exercises are generally best during flare-ups. Options include walking, swimming, cycling, yoga, and Pilates. Yoga in particular has shown benefits for endometriosis pain, with certain poses targeting pelvic muscles and promoting relaxation. High-intensity exercise may worsen symptoms for some women, so finding the right balance is important.

Diet and Nutrition

While no specific diet cures endometriosis, dietary modifications may help reduce inflammation and symptoms:

Anti-inflammatory foods to emphasize include fatty fish rich in omega-3s (salmon, sardines, mackerel), colorful fruits and vegetables (especially berries, leafy greens, and cruciferous vegetables), whole grains, nuts and seeds (especially walnuts and flaxseed), and olive oil. These foods contain antioxidants and anti-inflammatory compounds that may help reduce the inflammatory component of endometriosis.

Foods to limit or avoid include red meat (associated with increased endometriosis risk in some studies), processed foods, refined sugars and carbohydrates, alcohol (which can increase estrogen levels), and caffeine (may worsen symptoms for some women). Trans fats, found in many processed foods, are particularly problematic as they promote inflammation.

Some women report improvements with specific dietary approaches like gluten-free or low-FODMAP diets, particularly if they also have digestive symptoms. However, evidence is limited, and restrictive diets should be undertaken with guidance from a healthcare provider or dietitian to ensure nutritional adequacy.

Stress Management

Chronic pain is stressful, and stress can worsen pain perception—creating a challenging cycle. Effective stress management techniques include:

• Mindfulness and meditation: Regular practice can reduce pain perception and improve coping abilities. Even 10-15 minutes daily can be beneficial.
• Deep breathing exercises: Activating the parasympathetic nervous system can reduce tension and pain.
• Cognitive behavioral therapy (CBT): Working with a therapist can help develop coping strategies for chronic pain and address associated anxiety or depression.
• Support groups: Connecting with others who understand endometriosis can provide emotional support and practical tips.

When Should You See a Doctor?

See a doctor if you have severe menstrual pain that interferes with daily activities, pelvic pain between periods, pain during sex, difficulty conceiving after 12 months of trying (or 6 months if over 35), or bowel/bladder symptoms during menstruation. Seek immediate care for sudden severe abdominal pain, fever, heavy bleeding, or signs of infection.

Many women with endometriosis symptoms delay seeking care because they've been told painful periods are "normal" or have had previous concerns dismissed. However, pain that significantly impacts your quality of life is never normal and deserves evaluation. Early diagnosis and treatment can prevent disease progression, reduce complications, and preserve fertility.

Schedule a non-urgent appointment if you experience:

• Pelvic pain that limits work, school, or social activities
• Pain that doesn't improve with over-the-counter medications
• Pain that gets progressively worse over time
• Difficulty conceiving after trying for 12 months (6 months if over 35)
• New symptoms such as pain during sex, painful bowel movements, or bladder symptoms
• Symptoms that significantly impact your mental health or relationships

When seeing a healthcare provider, come prepared with a detailed description of your symptoms, including timing, severity, location, and any patterns you've noticed. If possible, bring a symptom diary. Don't hesitate to seek a second opinion if you feel your concerns aren't being adequately addressed.

Living Well with Endometriosis

Living well with endometriosis requires a comprehensive approach combining medical treatment, self-care strategies, emotional support, and workplace accommodations when needed. With proper management, most women can lead full, active lives. Building a supportive healthcare team, connecting with others who understand the condition, and advocating for your needs are essential components of long-term wellbeing.

Endometriosis is a chronic condition that requires ongoing management. While this can feel overwhelming, many women develop effective strategies that allow them to live full, productive lives. The key is finding the right combination of treatments, developing sustainable self-care practices, and building a support network.

Building Your Healthcare Team

Optimal endometriosis care often involves multiple specialists. Your team might include a gynecologist (preferably one experienced in endometriosis), a pain management specialist, a fertility specialist if pregnancy is a goal, a mental health provider, and possibly a physical therapist specializing in pelvic health. Coordinating care between these providers ensures comprehensive management.

Workplace Accommodations

Endometriosis can significantly impact work performance during flare-ups. Depending on your location and workplace, you may be entitled to reasonable accommodations such as flexible scheduling, ability to work from home during severe symptoms, access to private restroom facilities, permission to take breaks as needed, and temperature accommodations (ability to use heating pads). Having an open conversation with your employer or HR department—sharing only what you're comfortable with—can help arrange appropriate support.

Emotional Support and Mental Health

The chronic nature of endometriosis, combined with often-delayed diagnosis and the impact on fertility, relationships, and daily life, can take a significant emotional toll. Depression and anxiety are common among women with endometriosis. Seeking mental health support is not a sign of weakness—it's an essential part of comprehensive care. Support groups, whether in-person or online, can also provide invaluable connection with others who truly understand the challenges.