Inside the Pain: The Science Behind Endometriosis

This study aims to promote awareness regarding how endometriosis is a painful and debilitating condition, and advocate for further research on the disease
Zahra Osman
Lester B. Pearson High School
Grade 12

Presentation

No video provided

Problem

The purpose of this project is to better understand how socioeconomic factors negatively impact the prognosis of endometriosis, including delay of diagnosis and patient stigmatization.

Method

In Canada, there is an approximate 5-year delay in diagnosing a patient with endometriosis (Singh et al., 2024). This diagnostic delay has been researched to negatively impact patient fertility and their quality of life (Singh et al., 2024). Furthermore, this delay exists elsewhere in the world, where there is a 10-year global delay in diagnosing women with endometriosis (Singh et al., 2024).

Due to the global significance of this condition, I reviewed and researched several different endometriosis guidelines used across the world. I wanted to identify key similarities that different countries use to tackle endometriosis, but more importantly, I wanted to create a guideline of my own. My guideline is currently in progress, so please refer to my physical presentation to see my complete guideline.

To identify currently established endometriosis guidelines that I wanted to use to make my guideline, I used the PubMed database to identify articles to review. My search was determined using the PIO (Population/Problem, Intervention, and Outcome) Framework. My target population is women experiencing endometriosis, my intervention is the use of diagnostic guidelines, and my outcome is the time taken to diagnose a women with endometriosis. Taken together, I am striving to answer the following question: For women suffering with endometriosis, how can diagnostic guidelines impact how long it takes to make their diagnosis of endometriosis?

I used these framework details to begin my search. My inclusion criteria were the following:

  • International articles
  • Articles that outlined a nation's endometriosis guidelines
  • Articles that outlined an organization's endometriosis guidelines
  • Articles published after 2020

My exclusion criteria were the following:

  • Case reports
  • Opinion pieces
  • Articles not written in English

Research

What is Endometriosis?

Endometriosis is a painful chronic condition that occurs when tissue similar to endometrial tissue (inner lining of the uterus), grows ectopically or outside of the uterus (Mayo Clinic, 2024). This typically leads to disease involvement of the fallopian tubes, ovaries and pelvic tissue lining (Cleveland Clinic, 2024a; Mayo Clinic, 2024).

What Causes Endometriosis?

One of the most significant aspects of my project stems from this question. This is important because much of the stigma and diagnostic delay of endometriosis stems from us not knowing exactly what causes this disease! As a result, I have looked into possible mechanisms of endometriosis, and as this information is limited, more research needs to be done to better understand this condition (WHO, 2025).

Possible Causes (Cleveland Clinic, 2024a; Mayo Clinic, 2024)

  • Embryonic Cell Changes - Conversion of embryonic cells to endometrial-like tissue during puberty via hormones like estrogen
  • Immune System Dysregulation - Inability of the immune system to recognize and destroy endometrial tissue.
  • Retrograde Menstruation - Back flow of menstrual blood into the fallopian tubes and pelvic cavity. Blood has endometrial cells that can adhere to pelvic organs and walls\, leading to their growth and thickening during menstrual periods.
  • Transport of Endometrial Cells - Blood vessels carry endometrial cells outside of the uterus
  • Role of Peritoneal Cells - Hormonal conversion of peritoneal cells (inner lining of abdomen) to endometrial-like cells
  • Surgical Scar Complication - Abdominal surgical incisions at risk of adhesion by endometrial cells
Is Endometriosis Just a Bad Period?

No! Endometriosis is NOT a painful menstrual period! This is incredibly important to emphasize because endometriosis symptoms may pose as menstrual cycle ones, delaying diagnosis, management and treatment. When a woman has endometriosis, this endometrial-like tissue mimics what happens to the inner lining of the uterus when a woman experiences her monthly menstrual cycle. The endometriosis tissue will thicken and break down, until it is shed alongside the endometrial tissue during a woman's period. The biggest difference between endometriosis and the normal menstrual cycle, however, is that this tissue should not grow, especially outside of the uterus, and it is not fully expelled each month as a result. This allows the endometrial-like tissue to continue to grow, leading to endometriosis complications and problems for women with the disease (Mayo Clinic, 2024).

What Are Symptoms of Endometriosis?

A woman with endometriosis may experience numerous symptoms with this disease. Some of them include (Cleveland Clinic, 2024a; Mayo Clinic, 2024; WHO, 2025):

  • Pelvic Pain - This is the most common symptom reported among women with endometriosis. Being that this is a chronic condition\,
  • Dysmenorrhea (painful menstrual periods) - This may include cramping\, pelvic pain\, and stomach and lower back pain that last before and/or during each cycle. It has also been reported\, however\, that menstrual pain stemming from endometriosis can be progressive and unusually painful.
  • Dyspareunia (pain during sexual intercourse)
  • Dysuria (painful urination)
  • Dyschezia (painful defecation)
  • Heavy Bleeding - Between or during menstrual cycles
  • Poor mental health
  • Other Symptoms - Bloating\, constipation\, diarrhea\, fatigue and nausea
  • Infertility
What Are Risk Factors for Endometriosis?

Some of the risk factors for endometriosis include (Mayo Clinic, 2024):

  • Low body mass index
  • Nulliparity (a woman that has never given birth)
  • First-degree relative with endometriosis
  • Early menarche
  • Shorter and/or irregular menstrual cycles
What Are Some Important Endometriosis Statistics?

Listed below are some key statistics about endometriosis that aim to emphasize the importance of this disease (Singh et al., 2024; Wahl et al., 2021)

  • About 50% of female pelvic pain in Canada can be attributed to endometriosis
  • Diagnosis and treatment of endometriosis in Canada averages roughly between 7-10 years, and their is an approximate 5-year diagnostic delay
  • 1 in 3 Canadian women experience sexual violence, emphasizing the importance of promoting trauma-informed endometriosis care and treatment
  • 1 in 10 Canadian women experience endometriosis
  • More than 1 million Canadians are living with endometriosis
  • Less than 6% of Canada’s national health research funding is put to investigating the unique health needs of women
How Is Endometriosis Diagnosed?

The process of diagnosing endometriosis includes taking a comprehensive medical history, conducting a physical exam, and using imaging modalities on women suspected to have endometriosis. That being said, the specific steps and guidelines clinicians use differ regionally, nationally and internationally. As a result, the following information highlights a summary of guidelines and/or techniques commonly used in the diagnosis process.

History (Health Link BC, 2026; Hsu et al., 2010) Symptom severity varies based on each individual. Some women experiencing endometriosis have debilitating pain, while others are asymptomatic, even at severe stages in their condition. As some women with endometriosis also experience non-menstrual pelvic pain, such as pain that occurs during ovulation, it is crucial to be thorough when collecting relevant history from patients.

To make a diagnosis, a healthcare provider will initially ask the individual about their symptoms, family medical history, period normality, and past health. While this component of the diagnosis is important, it is equally to important to acknowledge that women with endometriosis may present differently. That is why physicians should take appropriate time and care when assessing patients with a suspicion of endometriosis.

Physical Exam (Health Link BC, 2026; Hsu et al., 2010) A pelvic exam is an appropriate exam to conduct when examining a patient. This may include a speculum and bimanual exam. Something important to note with history and physical examination is that sometimes these investigations are unhelpful in diagnosing endometriosis as no abnormalities can be found. Additionally, women's symptoms are often dismissed as regular period pain, normal experiences faced by women, or other conditions that are associated with pelvic pain. This stigmatizes women's pain, and delays diagnosis and treatment.

Imaging (Health Link BC, 2026; Hsu et al., 2010) Imaging tests such as magnetic resonance imaging (MRI) or a pelvic ultrasound are used to identify any endometriosis lesions. A transvaginal ultrasound, on the other hand, can diagnose bladder lesions, deep nodules, and endometriomas. Ultrasounds are commonly used because they are easy to perform and more accessible than other imaging modalities. Additionally, a CT scan of the pelvis is not a good method of diagnosis because it poorly visualizes the pelvic organs.

Laparoscopy (Cleveland Clinic, 2024b; Health Link BC, 2026; Hsu et al., 2010) A laparoscopy is often used to diagnose a woman with endometriosis. It is a surgery where a surgeon can view inside a patient’s abdomen or pelvis without cutting a large incision. While they are efficient at visualizing and diagnosing endometriomas (cysts that are filled with old blood), there are risks associated with the procedure. The operation can cause premature ovarian insufficiency and cause a decline in ovarian reserve, which can seriously impact a woman’s fertility. The post-surgical pain can also be extensive and worsen the patient’s quality of life.

How is Endometriosis Treated?

Treating endometriosis should focus on alleviating patients' pain and prioritizing their concerns, such as promoting future pregnancy or reducing their menstrual bleeding each cycle. As a result, pain treatment is usually the first treatment modality used, in contrast to immediately using surgical interventions to treat the endometriosis (Mayo Clinic, 2024).

Examples of medications used to treat endometriosis are (Mayo Clinic, 2024):

  • Non-steroidal anti-inflammatory drugs (NSAIDs) - provides menstrual pain relief
  • Hormonal therapy - e.g., progestin therapy, aromatase inhibitors, gonadotropin-releasing hormone agonists and antagonists, and hormonal contraceptives

The alternative to using medications to treat endometriosis is conservative surgery. This is meant to maintain the ovaries and uterus by removing endometriosis tissue, via modalities like laparoscopy. This is done in the hopes of promoting patient fertility, but there is a risk of symptom recurrence post-surgery (Mayo Clinic, 2024).

A permanent and drastic treatment of endometriosis is a hysterectomy. In this procedure, surgeons remove a woman's entire uterus, removing the endometriosis tissue, but also preventing said patients from ever getting pregnant, should they desire to do so. While this was formerly considered to be a primary treatment for endometriosis, other alternatives today are extensively pursued first (Mayo Clinic, 2024).

Data

Based on my literature search, I was able to analyze guidelines from five different organizations. One guideline is Canadian, one is American, one is Australian, one is from the United Kingdom, and the last guideline is a comprehensive European one. Listed below are key highlights from each guideline, which are currently being used to develop my endometriosis guideline.

Society of Obstetricians and Gynaecologists of Canada (SOGC) Guideline
  • Most Recent Guideline: No. 449 - Diagnosis and Impact of Endometriosis
  • Year of Guideline: 2024
  • Highlights (Singh et al., 2024)
    • Provides 10 recommendations regarding the clinical, imaging and surgical diagnosis process of endometriosis
    • Appropriate endometriosis diagnosis begins with patient-centered and trauma-informed care
    • Endometriosis diagnosis involves both primary care physicians and specialists (i.e. gynecologist)
    • Diagnosis involves a comprehensive medical history and physical examination, which may involve vital signs, a pelvic exam, and a bimanual exam
    • Special consideration should be given to adolescents with endometriosis, as they may present differently from adult women with endometriosis
    • Imaging modalities that can be used are abdominal and transvaginal ultrasounds as well as MRIs
    • CT scanning is not the primary imaging modality used when diagnosing endometriosis
    • Endometriosis cannot be investigated primarily via laparoscopy
    • Avoid diagnosis of endometriosis via biomarkers like cancer antigen 125 (CA-125)
American College of Obstetricians and Gynecologists (ACOG) Guideline
  • Most Recent Guideline: No Formal Name of the Guideline
  • Year of Guideline: 2026
  • Highlights (ACOG, 2026)
    • Provides 10 recommendations regarding the diagnosis process of endometriosis
    • Clinical diagnosis involves a symptom-based assessment and/or physical examination
    • Clinicians should keep endometriosis on their differential if a patient has at least one of the following symptoms: dyspareunia, dysmenorrhea, chronic pelvic pain, dyschezia, dysuria or infertility
    • Physical exam may include a bimanual abdominopelvic exam
    • Special consideration should be given to adolescents with endometriosis, as they may present differently from adult women with endometriosis
    • Initial imaging technique to use is a transvaginal ultrasonography
    • Alternative/additional imaging modalities include transabdominal ultrasound and MRI
    • Avoid diagnosis of endometriosis via biomarkers (e.g., endometrial, blood or urine)
    • Laparoscopy can be used but may vary based on unique patient presentation
National Institute for Health and Care Excellence (NICE)
  • Most Recent Guideline: No Formal Name of the Guideline
  • Year of Guideline: 2024
  • Highlights (Crump et al., 2024)
    • Emphasis on physicians keeping endometriosis on their differential when a female patient (including those <17 years of age) presents with one or more of the following: Chronic pelvic pain, dysmenorrhea, cyclical urinary symptoms (dysuria or hematuria), cyclical gastrointestinal symptoms (dyschezia), dyspareunia and infertility
    • Emphasis on prompt diagnosis
    • Offer pelvic exam as needed, especially when patient has undifferentiated pelvic pain
    • Primary imaging technique: High-quality transvaginal ultrasound scans
    • Diagnostic laparoscopy: Gold standard for endometriosis diagnosis
    • Just because a patient presents with normal physical examination and nothing was found via imaging, SHOULD NOT rule out endometriosis
    • Avoid diagnosis of endometriosis via biomarkers
European Society of Human Reproduction and Embryology (ESHRE)
  • Most Recent Guideline: No Formal Name of the Guideline
  • Year of Guideline: 2024
  • Highlights (Crump et al., 2024)
    • Emphasis on physicians keeping endometriosis on their differential when a female patient (including those <17 years of age) presents with one or more of the following: Chronic pelvic pain, dysmenorrhea, cyclical urinary symptoms (dysuria or hematuria), cyclical gastrointestinal symptoms (dyschezia), dyspareunia and infertility
    • Also considers extra-pelvic manifestations, such as catamenial pneumothorax, hemoptysis, and/or cyclical cough
    • Offer pelvic exam as needed, especially when patient has undifferentiated pelvic pain
    • Useful imaging techniques: High-quality transvaginal ultrasound scans and MRI
    • Diagnostic laparoscopy: Gold standard for endometriosis diagnosis
    • Just because a patient presents with normal physical examination and nothing was found via imaging, SHOULD NOT rule out endometriosis
    • Avoid diagnosis of endometriosis via biomarkers
Royal Australian College of Obstetricians and Gynaecologists (RANZCOG)
  • Most Recent Guideline: No Formal Name of the Guideline
  • Year of Guideline: 2024
  • Highlights (Crump et al., 2024)
    • Emphasis on physicians keeping endometriosis on their differential when a female patient (including those <17 years of age) presents with one or more of the following: Chronic pelvic pain, dysmenorrhea, cyclical urinary symptoms (dysuria or hematuria), cyclical gastrointestinal symptoms (dyschezia), dyspareunia and infertility
    • Emphasis on prompt diagnosis
    • Highlights importance of referring adolescent endometriosis patient to a pediatric gynecologist or an adult gynecologist willing to treat adolescents
    • Offer pelvic exam as needed, especially when patient has undifferentiated pelvic pain
    • Primary imaging technique: High-quality transvaginal ultrasound scans
    • Diagnostic laparoscopy: Gold standard for endometriosis diagnosis
    • Just because a patient presents with normal physical examination and nothing was found via imaging, SHOULD NOT rule out endometriosis
    • Avoid diagnosis of endometriosis via biomarkers

Conclusion

Based on my guideline search, I was able to identify key themes that defined the five endometriosis guidelines I reviewed. The first theme is clinician accountability and patient-centered care. As many women with endometriosis have had their symptoms and concerns historically dismissed and/or stigmatized, a good primary care provider that listens and hears their patients is the first step to reducing diagnosis times. The second theme is a taking a comprehensive history and physical exam. Endometriosis symptoms can vary between patients, so being thorough helps to ensure that no warning signs and/or symptoms are missed. The third theme is an emphasis on imaging modalities. While they do vary according to the guideline being used, it is important to have clinicians and other healthcare providers that are well-trained in transvaginal ultrasound and MRI. The fourth and last theme is avoidance of biomarkers. All 5 guidelines that I reviewed emphasized not using biomarkers when attempting to diagnosis a patient with endometriosis.

Using the themes that I have identified, I will use the research I have compiled to finalize my own endometriosis guideline that I hope will help to reduce stigma around this condition, and help to ensure that women with endometriosis are being diagnosed and treated quicker.

Citations

Reference List

ACOG. (2026). Diagnosis of Endometriosis. Obstetrics and gynecology, 147(3), 432–448. https://doi-org.ezproxy.lib.ucalgary.ca/10.1097/AOG.0000000000006181

Cleveland Clinic. (2024a, September 16). Endometriosis. https://my.clevelandclinic.org/health/diseases/10857-endometriosis

Cleveland Clinic. (2024b, December 13). Ovarian Endometrioma (Chocolate Cyst). https://my.clevelandclinic.org/health/diseases/22004-ovarian-endometrioma

Crump, J., Suker, A., & White, L. (2024). Endometriosis: A review of recent evidence and guidelines. Australian journal of general practice, 53(1-2), 11–18. https://doi-org.ezproxy.lib.ucalgary.ca/10.31128/AJGP/04-23-6805

Health Link BC. (2026). Endometriosis. https://www.healthlinkbc.ca/healthwise/endometriosis#:~:text=Your%20doctor%20will%20ask%20questions,called%20laparoscopy%20is%20often%20used

Hsu, A. L., Khachikyan, I., & Stratton, P. (2010). Invasive and noninvasive methods for the diagnosis of endometriosis. Clinical obstetrics and gynecology, 53(2), 413–419. https://doi.org/10.1097/GRF.0b013e3181db7ce8 Mayo Clinic. (2024). Endometriosis. https://www.mayoclinic.org/diseases-conditions/endometriosis/diagnosis-treatment/drc-20354661

Mayo Clinic. (2024, August, 30). Endometriosis. https://www.mayoclinic.org/diseases-conditions/endometriosis/symptoms-causes/syc-20354656

Singh, S. S., Allaire, C., Al-Nourhji, O., Bougie, O., Bridge-Cook, P., Duigenan, S., Kroft, J., Lemyre, M., Leonardi, M., Leyland, N., Maheux-Lacroix, S., Wessels, J., Wahl, K., & Yong, P. J. (2024). Guideline No. 449: Diagnosis and Impact of Endometriosis - A Canadian Guideline. Journal of obstetrics and gynaecology Canada: JOGC, 46(5), 102450. https://doi-org.ezproxy.lib.ucalgary.ca/10.1016/j.jogc.2024.102450

Wahl, K. J., Yong, P. J., Bridge-Cook, P., Allaire, C., & EndoAct Canada (2021). Endometriosis in Canada: It Is Time for Collaboration to Advance Patient-Oriented, Evidence-Based Policy, Care, and Research. Journal of obstetrics and gynaecology Canada: JOGC, 43(1), 88–90. https://doi-org.ezproxy.lib.ucalgary.ca/10.1016/j.jogc.2020.05.009

WHO. (2025, October 15). Endometriosis. https://www.who.int/news-room/fact-sheets/detail/endometriosis

Acknowledgement

I would like give a big thanks to my science coordinator, Mr. Bianchini. He has supported me throughout the entire duration of my project. I would also like to thank my parents for always encouraging me and helping me be the best person I can be. Without them, I would not be here today.