Endometriosis living patient overview

Overview

Endometriosis is a condition where tissue similar to the lining of the womb (endometrium) grows outside the womb, such as on the ovaries, fallopian tubes, or the lining of the pelvis. This tissue behaves like normal womb lining – it thickens, breaks down, and bleeds with each menstrual cycle – but because it has no way to leave the body, it becomes trapped and can cause pain, inflammation, and scar tissue.

Yes, endometriosis is relatively common. It is estimated to affect about 1 in 10 women and people assigned female at birth of reproductive age worldwide. Many people with endometriosis go undiagnosed for years because symptoms can be mistaken for normal period pain.

Endometriosis most often affects people of reproductive age, typically between the ages of 15 and 49. It can also affect teenagers and, rarely, postmenopausal women. It is seen in people of all ethnicities and backgrounds.

Symptoms

Common symptoms

• Painful periods that may get worse over time (dysmenorrhea)
• Pain during or after sex (dyspareunia)
• Pelvic pain or lower back pain at any time of the month
• Heavy or irregular menstrual bleeding
• Difficulty getting pregnant (fertility problems)
• Painful bowel movements or urination, especially during a period
• Fatigue, bloating, or nausea around the time of your period

Symptoms in children

• Severe period pain that interferes with school or activities
• Chronic pelvic pain not related to periods
• Painful bowel movements or urination during periods

Symptoms in older adults

• Pelvic pain that may persist after menopause
• Bloating or digestive symptoms similar to irritable bowel syndrome (IBS)
• Pain during sex that may be mistaken for other age-related changes

Causes

Main causes

• The exact cause of endometriosis is unknown. One theory is that menstrual blood flows backward through the fallopian tubes into the pelvis (retrograde menstruation), carrying endometrial cells that implant and grow.
• Another theory suggests that cells lining the pelvic organs can transform into endometrial-like cells (metaplasia).
• Genetics may play a role – the condition can run in families.

Risk factors

• Starting your period at an early age (before age 11)
• Having short menstrual cycles (less than 27 days)
• Having heavy or long periods (more than 7 days)
• Never having given birth
• Having a close family member (mother, sister, daughter) with endometriosis
• Conditions that block the normal flow of menstrual blood

When to see a doctor

See a doctor urgently if:

• If you have sudden, severe pelvic pain that is not like your usual period pain
• If you have heavy bleeding with clots and feel dizzy or short of breath
• If you have pelvic pain along with a fever

Book a routine appointment if:

• If you have period pain that keeps you from doing daily activities
• If you have pain during sex or when using the toilet
• If you have trouble getting pregnant after trying for a year (or 6 months if over 35)
• If you have ongoing pelvic pain or bloating that does not go away

Diagnosis

Diagnosis of endometriosis usually starts with a detailed discussion of your symptoms and a pelvic exam. Your doctor may then recommend imaging tests like an ultrasound or MRI. The only way to confirm endometriosis for certain is with a small surgical procedure called laparoscopy. During laparoscopy, a surgeon inserts a thin camera through a small cut in your belly to look for endometrial tissue and can take a sample (biopsy) if needed.

Tests that may be done

• Pelvic exam: to feel for cysts or tender areas behind the uterus
• Ultrasound: uses sound waves to create images of your pelvic organs (can detect ovarian cysts called endometriomas)
• MRI: provides detailed images of soft tissues and can help map out deep endometriosis
• Laparoscopy: a keyhole surgery under general anaesthetic – the gold standard for diagnosis and can also treat some endometriosis at the same time

What to expect at your appointment

If your doctor suspects endometriosis, they will talk with you about your symptoms and may refer you to a gynaecologist (a doctor specialising in the female reproductive system). Diagnosis can take time, often years, because symptoms can mimic other conditions. Be patient and persistent – keeping a symptom diary can help your doctor understand your pattern. Laparoscopy is usually not the first step; your doctor will often try to manage symptoms first and recommend surgery only if needed.

Treatment

There is no cure for endometriosis, but there are many ways to manage the symptoms and improve quality of life. Treatment depends on your age, symptoms, and whether you want to become pregnant. Options include pain relief, hormone therapies, and surgery. A combination of approaches often works best. Your doctor will work with you to create a plan that fits your needs.

Self-care at home

• Apply heat to your lower abdomen or back with a hot water bottle or heating pad
• Take warm baths or use relaxation techniques like deep breathing
• Gentle exercise like walking, swimming, or yoga can help reduce pain
• Get enough sleep and try to manage stress with activities you enjoy
• Keep a symptom diary to identify triggers (like certain foods or times of the month)

Medical treatments

Your doctor may suggest over-the-counter pain relievers such as nonsteroidal anti-inflammatory drugs (NSAIDs) to help with pain and inflammation. Hormonal treatments, including birth control pills, hormonal patches, or intrauterine systems (IUS), can help control the growth of endometrial tissue and reduce pain. These treatments work by stopping ovulation or thinning the womb lining. Your doctor will discuss the options that are safest and most effective for you. Do not start or stop any treatment without consulting your healthcare provider.

When is surgery considered?

Surgery may be an option if pain is severe and other treatments have not helped, or if you want to become pregnant. The most common surgery is laparoscopy to remove or destroy areas of endometriosis tissue (excision or ablation). In severe cases, a hysterectomy (removal of the uterus) may be considered, but this is not a cure and is usually a last resort. Talk to your gynaecologist about what surgery might mean for your fertility and long-term health.

Living with this condition

Living with endometriosis can be challenging because pain and other symptoms can be unpredictable. Planning ahead can help – for example, scheduling lighter activities during your period and letting your employer or school know about your condition. Many people find that pacing themselves and asking for help when needed makes day-to-day life easier. You are not alone, and many people with endometriosis lead full and active lives with the right support.

Lifestyle tips

• Exercise regularly – low-impact activities like walking, swimming, or Pilates can reduce pain and improve mood
• Prioritise sleep – aim for 7 to 9 hours a night to help your body handle pain
• Practice stress management – meditation, deep breathing, or counselling can help reduce stress which may worsen symptoms
• Join a support group (online or in person) to connect with others who understand what you are going through
• Communicate openly with your partner, family, and friends about your needs

Diet and exercise

While no diet can cure endometriosis, some people find that certain foods can trigger inflammation and pain. Try to eat a balanced diet rich in fruits, vegetables, whole grains, and omega-3 fatty acids (found in fish like salmon). Limiting red meat, processed foods, and caffeine may help some people. Regular movement is important – start gently and listen to your body. A physiotherapist who specialises in pelvic health can offer tailored exercises.

Mental health and emotional wellbeing

Living with chronic pain and fertility concerns can take a toll on your mental health. It is common to feel frustrated, anxious, or depressed. Do not hesitate to talk to your doctor about these feelings. Counselling, therapy, or support groups can provide a safe space to share your experience. Your emotional well-being is just as important as your physical health.

Prevention

Currently, there is no known way to prevent endometriosis because its causes are not fully understood. However, some research suggests that early diagnosis and treatment may help slow the progression of the condition and reduce its impact on your quality of life. If you have symptoms, do not wait – see your doctor to discuss your options.

Vaccines

No vaccines are available to prevent endometriosis. This field is not applicable.

Screening programmes

There is no routine screening test for endometriosis in the general population. If you have symptoms, your doctor will evaluate you based on your history and physical exam. Being aware of the symptoms and seeking help early can lead to earlier diagnosis and management.

Complications

If left untreated

• Chronic pelvic pain that can become more severe over time
• Infertility or difficulty getting pregnant
• Ovarian cysts (endometriomas) that may need surgery
• Scar tissue (adhesions) that can cause organs to stick together, leading to pain and bowel or bladder problems
• Fatigue and depression due to ongoing pain and isolation

Long-term outlook

While endometriosis is a long-term condition that can be challenging, most people can manage their symptoms effectively with the right treatment and support. Many people with endometriosis lead full lives, have successful pregnancies, and find ways to reduce pain. Research continues to improve treatment options. With a proactive approach and a good healthcare team, you can live well with endometriosis.

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