by Kyla Trkulja

Graphic design by Athena Li

Intense, throbbing abdominal pain filled my winter holiday in 2024. It was a strange kind of pain that I’ve never experienced, despite having menstrual cramps nearly every month. After almost fainting at Christmas dinner one week after the pain started, my fiancé took me to the emergency room. When the doctor came in, he didn’t even try to hide that he felt like I was wasting his time. He said my bloodwork looked normal, and these were just menstrual cramps, despite me insisting that I’ve experienced those cramps for 12 years and I knew that this was something different.

After advocating for myself, he reluctantly ordered an ultrasound and CT scan, which revealed that I had an infection in my upper reproductive tract known as pelvic inflammatory disease (PID). The doctor told me this was usually caused by a sexually transmitted infection (STI), which confused me given that my screening panel came back clean, but he barely stayed in the room long enough to prescribe me antibiotics, let alone answer my questions. I got my prescription and was told I would feel better in a few days.

I was in pain for over four months. I visited the emergency room five times during this period, as the doctors said to return “if the pain didn’t go away.” Each time I went, I had to answer the same questions, get another ultrasound, and undergo bloodwork, eventually culminating to doctors telling me they didn’t know why I was still in pain before sending me home. Four months later, I finally saw a gynecologist who made everything make sense. A small portion of cases of PID are simply due to chance, not STIs,¹ and women are often in chronic pain for weeks to months. Although I wasn’t thrilled that I had some bad luck, I was relieved to finally be validated and to get some assurance that the symptoms I was experiencing were legitimate. However, this quickly turned to anger when I thought about that first doctor’s dismissal who so brazenly told me this was nothing, and all the subsequent doctors who made me believe that the pain was all in my head when the imaging came back normal.

Unfortunately, situations like these are far too common among women, with conditions affecting the reproductive tract frequently being under- or mis-diagnosed. Overlapping symptoms and imaging limitations make their diagnosis challenging,¹ while medical gaslighting from physicians and other healthcare professionals can result in symptoms not being taken seriously. In addition to the negative impact on a woman’s quality of life, underdiagnosis can have serious, long-term consequences. In the case of PID, letting inflammation go untreated can lead to ectopic pregnancies, infertility, and chronic pelvic pain due to reproductive organs adhering to each other, or other organs such as the liver.^1,2 Misdiagnosis can therefore have severe consequences that can permanently worsen a patient’s life, making it even more frustrating when medical professionals are quick to dismiss the symptoms.

PID is just one of many reproductive conditions that can result in a delayed or misdiagnosis. Polycystic ovarian syndrome (PCOS) is another, characterized by excessive androgen (male-dominant) hormones, menstrual irregularities, and polycystic ovaries.³ This condition is the most common chronic reproductive and metabolic endocrine disorder affecting women of childbearing age, with an estimated prevalence of 4-21% of women worldwide,³ and is a major cause of infertility.⁴ The causes and clinical presentation of PCOS are complex, involving multiple physiological systems⁴–as a result, the condition is underdiagnosed, with diagnosis frequently being delayed.^4,5 A recent study including almost 1400 women with PCOS worldwide found that half of these patients saw at least three healthcare professionals before being diagnosed with the condition, and for a third of them, this took over two years.⁵ The vast majority of women were unsatisfied with their diagnostic experience and the information provided to them at the time of diagnosis, with only 35.2% and 15.6% being satisfied with each of these respective aspects of their healthcare.⁵

Due to the metabolic-related features of PCOS, the consequences of underdiagnosis go far beyond discomfort and infertility. PCOS can lead to serious complications such as metabolic syndrome, type 2 diabetes, endometrial cancer, and cardiovascular disease.^3,4 Treatments to manage the symptoms of PCOS and increase fertility are available, so a timely diagnosis is critical for managing the condition and preventing future complications.³ Unfortunately, similar to other reproductive health conditions, symptom heterogeneity, differences in diagnostic methods and criteria, and the dismissal by healthcare providers pose obstacles to timely diagnosis and can lead to catastrophic long-term consequences in millions of women worldwide.⁵

Perhaps the most distressing stories, however, come from women with endometriosis–a chronic condition characterized by the presence of endometrial-like tissue outside of the uterus. Although the causes of this condition remain poorly understood, its symptoms often include pelvic pain, fatigue, bowel and bladder symptoms, and infertility.⁶ Endometriosis is estimated to affect about 10% of reproductive-age women, and has been identified in almost 50% of women with persistent pelvic pain and 40% of women living with infertility.⁷ Despite its serious long-term complications and associated reduced quality of life, there is currently no cure.⁶ However, medications and surgery help manage the symptoms, especially in the early stages, making a timely diagnosis imperative in minimizing disruptions to a woman’s life.

The delay in diagnosing endometriosis even exceeds that of PCOS, with the median time from symptom onset to diagnosis being over 10 years, and 74% of patients receiving at least one false diagnosis, such as PCOS, before endometriosis is correctly identified.⁸ These delays can deprive patients of timely treatments and proper management of their condition, leading to depression, adverse effects on intimate relationships, missed school and work, and frequent visits to urgent and non-urgent medical centres.⁹ This diagnostic delay can also have serious medical consequences. A recent meta-analysis including almost 2 million women with endometriosis found that the condition was associated with gestational and obstetric complications such as increased risk of preterm birth and miscarriage.⁹

The disheartening reality is that underdiagnosis of reproductive conditions in women can have lasting, life-altering impacts, ranging from chronic pain, infertility, secondary diseases, and pregnancy complications. However, complex symptoms, diagnostic challenges, and the unfortunate dismissal and normalization of these symptoms by society–including healthcare providers–results in women frequently being misdiagnosed and left isolated as they navigate their symptoms and well-being. Increasing awareness of these conditions coupled with improved methods of diagnosis are resulting in some improvements, but considerable progress is still required before timely, compassionate, and informed diagnosis becomes commonplace. In the meantime, the most important thing an individual can do is advocate for yourself–you know your body best and can tell when something is wrong. Listen to those instincts and ensure you are getting the proper testing and information to take care of your health and quality of life. Hopefully, better medical practices will eventually follow.  

References

1. Edward M, Ernest A, Christopher TY, et al. Timely diagnosis of PID: Leveraging ultrasound for Effective Management. Health Science Reports. 2025 Mar;8(3).

2. Basit H, Pop A, Malik A, et al. Fitz-Hugh-Curtis Syndrome. In: StatPearls. Florida: StatPearls; 2025.

3. Rababa’h AM, Matani BR, Yehya A. An update of polycystic ovary syndrome: Causes and therapeutics options. Heliyon. 2022 Oct;8(10).

4. Jiang B. The global burden of polycystic ovary syndrome in women of reproductive age: Findings from the GBD 2019 Study. International Journal of Women’s Health. 2025 Jan;17.

5. Gibson-Helm M, Teede H, Dunaif A, et al. Delayed diagnosis and a lack of information associated with dissatisfaction in women with polycystic ovary syndrome. The Journal of Clinical Endocrinology & Metabolism. 2016 Dec;102(2).

6. Allaire C, Bedaiwy MA, Yong PJ. Diagnosis and management of endometriosis. Canadian Medical Association Journal. 2023 Mar;195(10).

7. Giudice LC. Endometriosis. New England Journal of Medicine. 2010 Jun;362(25).

8. Hudelist G, Fritzer N, Thomas A, et al. Diagnostic delay for endometriosis in Austria and Germany: Causes and possible consequences. Human Reproduction. 2012 Sep;27(12).

9. Agarwal SK, Chapron C, Giudice LC, et al. Clinical diagnosis of endometriosis: A call to action. American Journal of Obstetrics and Gynecology. 2019 Apr;220(4).