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Why Endometriosis is Misdiagnosed: A Women’s Health Crisis

Introduction

Endometriosis is one of the most commonly misdiagnosed conditions affecting women, often dismissed as “just period pain.” Despite affecting approximately 1 in 10 women of reproductive age, it can take years to receive a correct diagnosis leading to prolonged suffering and complications.

The condition affects women of all reproductive ages, and its prevalence is found to be around 10-15%.4,6 It is present in around 35-50% 8 women experiencing chronic pelvic pain, and in about 30-40% of women with infertility. 2, 13    

The misunderstood nature of endometriosis is due to a combination of nonspecific symptoms, stigma around menstrual pain, and diagnostic limitations. These delays not only worsen physical outcomes but also affect mental health and quality of life.

Endometriosis occurs when tissue similar to the uterine lining grows outside the uterus, commonly affecting the ovaries, fallopian tubes, and pelvic lining. Unlike the normal endometrium, it can grow/ multiply, bleed, cause inflammation, and invade nearby tissues, such as the ovaries, fallopian tubes, rectum, or pouch of Douglas.

This misplaced tissue is highly responsive to estrogen which leads to estrogen-driven inflammation.2, 3, 6 As a result, patients may experience chronic pelvic pain, painful periods (dysmenorrhea), painful intercourse, and even infertility.

However, because these symptoms overlap with conditions like irritable bowel syndrome (IBS), pelvic inflammatory disease, and ovarian cysts, accurate diagnosis is often delayed or missed altogether.1

Causes 

The exact cause of endometriosis is unknown. However, researchers believe it involves various factors involving hormonal, inflammatory, genetic and immunological process responsible for its development.5

Retrograde Menstruation Theory

Several theories have been proposed over the decades to explain the development of endometriosis such as theory of retrograde menstruation, which suggests that back flow or reflux of menstrual blood containing the endometrial cells, back into the uterus, instead of flowing out of the body, leads to formation of cysts and/or lesions of endometriosis. 

Circulatory Spreading Theory

The theory of circulatory spreading suggests that endometrial-like cells migrate into the bloodstream and/or the lymphatic system, then enter different parts of the body,1 leading to the formation of lesions in various locations, resulting in endometriosis.

Metaplasia theory

According to the metaplasia theory, the peritoneal lining of the abdomen transforms into endometrial-like cells, possibly due to their shared origin on embryonic stages. This transformation can be trigged by hormonal imbalance, genetic factors and inflammation.

Genetic theory

Whereas, the genetic theory emphasises that genes play an important role in the inheritance and development of endometriosis. And certain gene mutations such as ESR1, CYP19A, IL-1, and IL-6 may increase the risk.

Signs and Symptoms  

A large number of women are asymptomatic and may only become aware of the disease during laparoscopic examination for other pelvic conditions 5or while seeking fertility services.6

Common signs and symptoms of endometriosis include 

  • Chronic pelvic pain 
  • Severe menstrual cramps 
  • Pre-menstrual spotting 
  • Urinary disturbances such as painful urination, blood in urine 
  • Lower back pain 
  • Pain during intercourse    
  • Infertility and Subfertility 
  • Painful defecation (bowel movement) 
  • Gastric issues

 Diagnosis and misdiagnosis 

Doctors cannot confirm endometriosis with a simple blood test, unlike many other non-infectious diseases. Instead, they rely on laparoscopic examination and lesion biopsy to diagnose it. 2, 1 However, 75% of people with endometriosis receive a misdiagnosis and face delays of 7 to 10 years before getting the correct diagnosis.

Lack of Awareness

This is mainly due to lack of awareness among public and medical community. People assume symptoms of endometriosis to be menstrual symptoms and delay medical care. While those who do seek medical care are brushed off by healthcare professionals who associate pain and other symptoms to menstrual and/ or psychological cause. 

Fear of Surgical procedure

Surgical diagnosis has risks and often gives people cold feet due to fear of the procedure and its cost. In addition, recent guidelines advocate for non-surgical diagnosis by focusing on symptom assessments, imaging and physical examination to tackle the issue of delayed diagnosis and misdiagnosis. 

Mental Health and Stigma 

Endometriosis can take a toll on a person’s well-being, both physically and mentally. The disease can lead to disturbances in various aspects of life due to delayed diagnosis, lack of cure, and uncertainty of the nature of the disease. 5

Chronic pelvic pain (CPP) is the leading factor affecting the quality of life and mental health.

Link Between Pain and Mental Health

Women with CPP have greater rates of mental distress than those with no CPP 5. The relationship between CPP and mental health disturbances is said to be bidirectional. That is, CPP increases the risk depression and anxiety whereas, anxiety and depression increase the risk of CPP. 5, 6

Some studies reveal that the intensity of pain corresponds to worse health status. Therefore, higher pain scores are associated with poor quality of life 4 and higher mental distress. 6  

Personal, Social and Workplace Impact

Disturbances in personal and professional life can occur due to endometriosis. 50-56% women face difficulty in physical intimacy, out of which 8-10% cases resulted in break-ups. 5

Social Stigma and Misunderstanding

A study revealed that women faced discrimination for disclosing menstrual problems to friends, partners, colleagues, medical care providers, employers, and family. They were also accused of making excuses to avoid work or sex with their partners.10

In Puerto Rico, women reported that others did not view endometriosis as a serious health condition, invalidating and normalizing menstrual symptoms 5.

Lack of Support in Workplaces and Communities

Pain reduces work productivity. Employers, colleagues and workplace policies often provide limited sick leaves. 

Ultimately, the stress caused by the symptoms, workplace conditions, chances of unemployment or termination from work due to reduced productivity, coupled with the cost burden of the disease adds up leading to major consequences on mental health 5. Women have reported feeling helpless, hopeless, miserable, angry 11 and suicidal. 12 

Treatment of Endometriosis 

There is no definitive first-line treatment for endometriosis. Management involves medical or surgical treatment, or both. However, The choice of approach depends on the extent of the disease, patient complaints, treatment costs, pregnancy plans, and possible side effects.13

Surgical intervention 

Laparoscopy helps diagnose and remove lesions. However, the recurrence of the disease and pain is up to 44% within a year. Therefore, medications are often used post-surgery to reduce recurrence and symptom intensity. 13 

Drug Therapy 

Non-steroidal anti-inflammatory drugs (NSAIDs) and/or combined hormonal contraceptives commonly treat chronic pelvic pain caused by endometriosis. 13 Gonadotropin-releasing hormone (GnRH) agonists (Danazol, gestrinone, medroxyprogesterone acetate ) are also widely used. 6, 13

Conclusion  

Endometriosis is a complex disease that has potential to cause chronic pelvic pain, organ damage, and infertility in women. However, the recognition of symptoms and early diagnosis is key to prevent progression of disease and to find the most appropriate treatment.

Unbiased, impartial, and attentive support from healthcare providers, family, friends, and even oneself is essential. Therefore, endometriosis should be addressed through a multidisciplinary approach involving support, care, and understanding from physicians, gynecologists, psychologists, family, and friends. 

FAQs   

  1. How can you cure endometriosis? 

Currently, there is no definitive cure for endometriosis. However, surgical and medication adherence can prevent progression of disease. 

  1. How can I recognise symptoms for early detection? 

Track your menstrual cycle and monitor for changes in flow, early or delay in cycle, chronic pain. Also monitor for abnormal pain during physical intimacy or bowel movements. Have regular visits to your gynaecologist.  

  1. Can I get endometriosis in teenage? 

Yes, endometriosis can occur in women of all ages. 

References

  1. Bulun SE, Yilmaz BD, Sison C, Miyazaki K, Bernardi L, Liu S, et al. Endometriosis. Endocr Rev. 2019;40(4):1048–79. doi:10.1210/er.2018-00242. Available from: https://www.sciencedirect.com/science/article/pii/S1028455922002704?via%3Dihub
  2. Allaire C, Bedaiwy MA, Yong PJ. Diagnosis and management of endometriosis. CMAJ. 2023;195(10):E363–71. doi:10.1503/cmaj.220637. Available from: https://pmc.ncbi.nlm.nih.gov/articles/PMC10120420/
  3. Amro B, Ramirez Aristondo ME, Alsuwaidi S, Almaamari B, Hakim Z, Tahlak M, et al. New understanding of diagnosis, treatment and prevention of endometriosis. Int J Environ Res Public Health. 2022;19(11):6725. doi:10.3390/ijerph19116725. Available from: https://pubmed.ncbi.nlm.nih.gov/35682310/
  4. Škegro B, Bjedov S, Mikuš M, Mustač F, Lešin J, Matijević V, et al. Endometriosis, pain and mental health. Psychiatr Danub. 2021;33(Suppl 4):632–6. Available from: https://www.psychiatria-danubina.com/UserDocsImages/pdf/dnb_vol33_noSuppl%204/dnb_vol33_noSuppl%204_632.pdf
  5. Kocas HD, Rubin LR, Lobel M. Stigma and mental health in endometriosis. Eur J Obstet Gynecol Reprod Biol X. 2023;19:100228. doi:10.1016/j.eurox.2023.100228. Available from: https://www.sciencedirect.com/science/article/pii/S2590161323000534?via%3Dihub
  6. Laganà AS, La Rosa VL, Rapisarda AMC, Valenti G, Sapia F, Chiofalo B, et al. Anxiety and depression in patients with endometriosis: impact and management challenges. Int J Womens Health. 2017;9:323–30. doi:10.2147/IJWH.S119729. Available from: https://doi.org/10.2147/IJWH.S119729
  7. Olliges E, Bobinger A, Weber A, et al. The physical, psychological, and social day-to-day experience of women living with endometriosis compared to healthy age-matched controls: A mixed-methods study. Front Glob Womens Health. 2021;2:767114. doi:10.3389/fgwh.2021.767114. Available from: https://www.frontiersin.org/journals/global-womens-health/articles/10.3389/fgwh.2021.767114/full
  8. Burney RO, Giudice LC. Pathogenesis and pathophysiology of endometriosis. Fertility and Sterility [Internet]. 2012 [cited 2025 Jul 15]; 98(3):511–9. Available from: https://linkinghub.elsevier.com/retrieve/pii/S0015028212006826.
  9. Lamceva J, Uljanovs R, Strumfa I. The main theories on the pathogenesis of endometriosis. Int J Mol Sci. 2023;24(5):4254. doi:10.3390/ijms24054254. Available from: https://pmc.ncbi.nlm.nih.gov/articles/PMC10001466/
  10. Seear K. The etiquette of endometriosis: Stigmatisation, menstrual concealment and the diagnostic delay. Social Science & Medicine [Internet]. 2009 [cited 2025 Jul 15]; 69(8):1220–7. Available from: https://linkinghub.elsevier.com/retrieve/pii/S0277953609004808.
  11. Moradi M, Parker M, Sneddon A, Lopez V, Ellwood D. Impact of endometriosis on women’s lives: a qualitative study. BMC Women’s Health [Internet]. 2014 [cited 2025 Jul 15]; 14(1):123. Available from: https://bmcwomenshealth.biomedcentral.com/articles/10.1186/1472-6874-14-123.
  12. Cox H, Henderson L, Andersen N, Cagliarini G, Ski C. Focus group study of endometriosis: Struggle, loss and the medical merry‐go‐round. Int J of Nursing Practice [Internet]. 2003 [cited 2025 Jul 15]; 9(1):2–9. Available from: https://onlinelibrary.wiley.com/doi/10.1046/j.1440-172X.2003.00396.x.
  13. Dipiro JT, Talbert RL, Yee GC, Matzke GR, Wells BG, Posey LM. Pharmacotherapy: A pathophysiologic approach. 7th ed. New York: McGraw-Hill Education; 2008. p. 1345–50.

Written By: Dua Sheikh

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