Endometriosis

Endometriosis is an inflammatory disease characterized by the growth of endometrial-like tissue outside of the uterus that causes chronic pelvic pain, painful periods, painful sexual intercourse, bowel and bladder symptoms, and infertility. Endometriosis is most found on the ovaries, fallopian tubes, uterosacral ligaments, and in the gastrointestinal tract, but has been found on every organ in the body except the spleen.

Endometriosis impacts approximately 10% of women and an unknown number of transgender, non-binary, and gender-diverse individuals. It accounts for 50% of pelvic pain in Canadian women and an unmeasured amount in transgender, non-binary, and gender-diverse individuals. Endometriosis impacts patients’ quality of life, productivity, relationships, and has long-term implications on patients’ overall health and wellbeing. Endometriosis also carries a large economic burden to the health care system as well as indirect costs resulting from disease symptomology and presentation. Yet, a recent survey found that only 7% of Canadian women received a clinical diagnosis of endometriosis.

Due to the complex nature and presentation of the disease; lack of provider knowledge about endometriosis, diagnostic criterion, and disease management; stigma; and other systemic considerations, the current diagnostic delay is at least five years in Canada.

The Society of Obstetricians and Gynaecologists of Canada (SOGC) has published clinical guidance related to endometriosis diagnosis and management:

SOGC Guideline: Surgical Management of Endometriosis
SOGC Guideline No. 445: Management of Chronic Pelvic Pain
SOGC Guideline No. 449: Diagnosis and Impact of Endometriosis – A Canadian Guideline

The SOGC’s website, yourperiod.ca, has information about endometriosis for patients and the public.

Pathogenesis

Endometriosis causes, presentations, and mechanisms continue to be explored, although none of the hypotheses fully explain the pathogenesis. Current theories include:

• Retrograde menstruation

• Genetic disposition

• Lymphatic or circulatory spread

• Metaplasia

• Immune dysfunction

• Mullerian abnormalities

• Environmental factors

Symptoms

Endometriosis affects women, girls, transgender men, and gender-diverse and non-binary people of all races, ethnicities, and socio-economic groups. Symptoms and disease presentation often begins to appear after menarche and may progress with age.

Disease presentation is highly individual and may depend on the location and severity of endometriosis. However, there is not always a connection between the extent of the disease and the symptoms. The most common symptom of endometriosis is pain, which is inclusive of:

• Chronic pelvic pain (pain that persists for more than three months)

• Dysmenorrhea

• Dyspareunia

• Dyschezia

• Dysuria

Patients may also present with post-coital bleeding, bloating, diarrhea, constipation, obstructive symptoms, chest or thoracic pain, sciatica, general fatigue, and infertility. Concomitant conditions include uterine fibroids, polycystic ovarian syndrome, irritable bowel disease, migraines, fibromyalgia, anxiety, and depression, among others.

Persistent symptoms can impact patients’ quality of life, including their mental and physical health. Endometriosis can affect patients across the life course, impacting their social life, school or professional aspirations, health, and finances. Feelings of uncertainty, anxiety, and depression may be higher among people who feel that they have been dismissed by friends, family, or medical professionals, and among those who have experienced systemic oppressions, delays to diagnosis, and medical trauma. Said feelings may also appear in realms where culturally safe, trauma-informed, and/or gender-affirming care is not available.

Diagnosis

Early diagnosis is extremely important to help slow and mitigate worsening disease progression, identify treatment options, limit unnecessary interventions, and address patient concerns. However, research has continuously shown that patients do not feel as though their symptoms are believed. The diagnostic delay in Canada is at least five years. Diagnostic delay is associated with self-diagnosis and management, misdiagnosis, and non-discriminatory tests and treatment. It can adversely influence the patient–provider relationship, as patients may not feel as though they are being validated or receiving adequate care.

Barriers to diagnosis include a lack of education about menstrual health in schools, menstrual stigma and the normalization of menstrual pain, attitudes and a lack of training for health care professionals, delayed referrals to specialist services, overlap of symptoms with other gynaecologic and gastrointestinal conditions, lack of a non-invasive method of diagnosis, and concerns about the value of a diagnosis. Patients from underserved communities (BIPOC and 2SLGBTQIA+ Peoples) may experience additional barriers, such as differences in disease presentation and reduced access to primary and specialized care. Youth may also face unique barriers, both due to atypical lesions presenting upon direct visualization and due to a lack of support and being met with skepticism.

Collecting patient history, symptomology, and conducting a physical exam are important to the diagnostic process. A trauma-informed approach should be adopted, bearing in mind that some patients may feel discomfort or unsafe in medical settings with a pelvic or other physical examination due to previous trauma. A physical exam may support:

• diagnosing endometriosis by looking for signs of the disease, including deep, ovarian, and extrapelvic endometriosis;

• evaluating the degree and localization of pain;

• and determining the process for further investigation.

It is important to bear in mind that there is not always a correlation between symptomology and disease severity. If the clinician is not confident in their assessment, it is crucial to refer patients to an appropriate clinician.

Clinical Guidelines

SOGC Guideline No. 449: Diagnosis and Impact of Endometriosis – A Canadian Guideline provides recommendations for health care providers on the following topics.

• The clinical diagnosis, whereby endometriosis is suspected through patient history, physical exam, and transvaginal, transrectal, and limited abdominal ultrasound (depending on patient comfort and preference) without advanced imaging or surgical confirmation.

• The imaging diagnosis, whereby advanced abdominal and pelvic ultrasound or MRI is used to determine if ovarian endometriomas and deep endometriosis are present, as interpreted by an imaging specialist. An MRI may also be used to look for disease implantation on the abdominal wall, thoracic or diaphragmatic endometriosis, nerve endometriosis, or genito-urinary tract endometriosis.

• The surgical diagnosis, whereby direct visualization at the time of laparoscopy and laparotomy is completed and diagnosis is confirmed if a histologic specimen is evaluated by pathology.

While surgical diagnosis was long considered the gold standard, it should not be used as the primary investigation tool as it leads to delays in treatment and can exacerbate acute and chronic pain.

It is critical that the diagnostic approach be individualized to each patient based on their clinical presentation, priorities, and specific needs that consider their gender, sexual orientation, education level, ability, race, culture, or ethnicity. Patients have the right to make informed decisions about their care and should be provided with accurate, up-to-date information about the diagnostic approaches including the advantages and disadvantages of each diagnostic approach. Patient decisions regarding the diagnostic pathway should be discussed and respected.

Management

Source: Williams Gyne fourth edition: Hoffman, B. L., Schorge, J. O., Halvorson, L. M., Hamid, C. A., Corton, M. M., & Schaffer, J. I. (2020).
Williams gynecology (4th ed.). McGraw-Hill Education.

Disease management should consider patients’ age, gender identity, disease progression and symptomology, family-planning goals, values, and beliefs.

There are several first- and second-line hormonal therapies available to suppress ovulation and menstruation. They can be paired with surgical management.

First-line therapies include:

• Combined hormonal contraceptives

• Progestins

Second-line therapies include:

• GnRH agonists

• GnRH antagonists

• Aromatase inhibitors

Diagnosis and management of endometriosis, published in CMAJ, includes a summary of hormonal therapies for endometriosis including their dosage, adverse effects and special considerations, and relative costs.

Surgical management, using ablative or excision techniques, may be discussed. While surgery may increase fertility rates and reduce symptomology, not all patients will be responsive to surgical management, and are both surgical risks and risk of pain recurrence over time. It is important to clearly articulate the risks of surgical management with patients.

Additional management options may include non-steroidal anti-inflammatory agents (NSAIDs) as a first-line therapy for pain. Pain modifiers, opioids, and cannabis may also be recommended to patients for pain and other symptom management. Adopting a multidisciplinary approach may be beneficial to supporting patients and supporting biopsychosocial pain management. Evidence-based approaches include physiotherapy, counselling, and mindfulness techniques. There is emerging evidence that suggests acupuncture may be beneficial for chronic pelvic pain, and that diet and exercise can help reduce inflammation associated with endometriosis, though more research is needed on these topics.

It is important that patients are provided with comprehensive management options that consider their unique circumstances. For instance, transmasculine individuals may choose to have gender-affirming surgery as part of simultaneous surgical transition and endometriosis management.

As with the diagnostic process, patients have the right to make informed decisions about their care. Patients should be provided with information about the management options including the advantages and disadvantages of management pathways. Patients may choose management options based on perceived benefits and harms, affordability, beliefs, values, and availability. Patient decisions should be respected.

Gender-Inclusive Language & 2SLGBTQIA+ Care

Endometriosis, traditionally viewed as a condition affecting cisgender women, also significantly impacts transgender men. Testosterone therapy, commonly used during gender transition, can influence the symptoms and presentation of endometriosis in transgender men.  Despite testosterone's role in inducing amenorrhea, studies have shown that endometrial activity may persist, leading to active lesions.  This underscores the need for healthcare providers to recognize that endometriosis can occur in transgender men, even those undergoing hormone therapy. Limited research and awareness contribute to diagnostic challenges, often resulting in delays and inadequate care.

Trauma-Informed Considerations

Trauma-informed practice considers the enduring effects of trauma and focuses on relational approaches and changes to organizational culture to provide support. Patients present with unique histories that directly and indirectly affect their health and how they may engage with health care services. Working in a trauma-informed manner is not based on patients disclosing trauma but is instead focused on creating safety, promoting choice and collaboration, and building on existing patient knowledge and strength.

Trauma can influence patients’ pain and disease presentation, their relationships, health care utilization, their direct care, and endometriosis management. Embedded power relations in patient–provider care may create an unequal power structure, where patients do not feel comfortable sharing personal information or personal experiences out of fear for re-traumatization or discrimination.

A trauma-informed approach to care may:

• Consider patients’ comfortability in medical settings

• Consider patients’ comfortability with physical examinations

• Consider geographic barriers including access to clinics, hospitals, and costs associated with travel

• Asking patients permission before starting or continuing with the examination

• Detailing the steps of the physical exam

• Pausing or stopping the examination if patients appear hesitant or frozen during your discussion or physical exam

• Providing patients with comprehensive information about treatment and diagnostic pathways

• Integrating a multidisciplinary approach to care

• Providing educational materials and resources to help patients self-advocate

• Continuing unbiased care regardless of patient decision-making and/or treatment adherence

• Providing a continuity in care

• Working from a life-course perspective that recognizes endometriosis as a chronic disease

• Working in a gender-affirming and a culturally safe way.

• Offering a social worker, interpreter, or cultural liaison upon request

Adopting a trauma- and violence-informed approachvalidates patient perspectives and experiences, something that patients may not have previously experienced.

Endometriosis Resources for Health Care Providers

Research:

JOGC Virtual Special Issue on Endometriosis

Tools:

Generalized Anxiety Tool (GAD-7)
Patient Heath Questionnaire (PHQ-9)
Endometriosis Impact Questionnaire (EIQ)

Pain Logbook

Endometriosis Resources for Patients

Previous Live Events

Endometriosis summit March 5 2025

Information and Tools:

Pain and Symptom Diary
Pelvic Pain Symptom Tracker
IUD Insertion: A Guide to Easing Discomfort
My Endo Report

Endometriosis Symptom Checker

Pain Logbook

Decision Aids

SOGC What is Endometriosis Infographic

Endometriosis for patients infographic - 1
Fact Sheet
Endometriosis

Endometriosis Resources for African, Caribbean, and Black Patients:

The Endometriosis Resource Portal for People of Color
Endo Black, Incorporated
The Impact of Endometriosis and Fibroids on Black Communities

Endometriosis Resources for Indigenous Patients:

Indigenous Self-Care and Medicine Wheel Teachings

Endometriosis Resources for Gender-Diverse Patients:

EndoFound’s LGBTQIA Resource Hub for Endo Patients
Rainbow Health Ontario
Endometriosis: A Patient’s Journey to Symptom Validation

New SOGC Resources