Women With Ulcerative Colitis Are More Likely to Be Misdiagnosed — Here Are the Signs to Look Out For

Approximately 2.4 million individuals in the United States are diagnosed with inflammatory bowel disease (IBD), yet many women continue to experience significant delays in obtaining an accurate diagnosis. Experts are actively urging female patients to listen to their instincts and be vigilant about potential symptoms, which include rectal bleeding and bowel movements occurring at night.

Recent accounts reveal that women with IBD encounter higher rates of misdiagnosis compared to their male counterparts. Leybelis Padilla, a gastroenterologist and founder of Unlocking GI, highlights that women often face extended wait times for a proper diagnosis. This delay is particularly concerning, as it can result in more severe health issues down the line. Padilla mentions that this pattern is observable in various gastrointestinal conditions, including colon cancer, which women are more likely to have diagnosed during emergency visits, potentially affecting their chances for successful treatment.

Alex Marino’s experience illustrates this issue vividly. After giving birth in 2021, she noticed significant changes in her digestion. Although she had a history of irritable bowel syndrome (IBS), the increase in frequency and presence of blood in her stool prompted her to seek a specialist’s help. Initially, her symptoms were chalked up to hemorrhoids, despite her insistence that this was not the case. Thankfully, her doctor empathised with her concerns and agreed to perform a colonoscopy, which ultimately diagnosed Marino with ulcerative colitis, a chronic autoimmune form of IBD characterised by inflammation in the colon.

The symptoms associated with ulcerative colitis range from abdominal pain and rectal bleeding to fatigue and urgent bowel movements. Crohn’s Disease is another type of IBD, impacting the entire digestive system and causing symptoms such as weight loss and malnutrition. Importantly, a lesser-known signal of IBD is the necessity to wake in the night for bowel movements. Moreover, non-digestive symptoms such as brain fog and skin rashes can also occur, complicating the clinical picture.

Though the symptoms of IBD do not vary between men and women, women continue to bear a disproportionate burden. The findings from a recent study reveal that female patients with IBD often report poorer quality of life, heightened psychological distress, and reduced sexual activity when compared to males.

Compounding the challenge is the frequent misdiagnosis of IBD as irritable bowel syndrome (IBS), which is particularly prevalent among women. Both conditions share symptoms, leading to confusion between the two. However, it is essential to understand that IBD represents a chronic autoimmune disease involving structural changes in the digestive system, while IBS does not exhibit visible inflammation. Essentially, a diagnosis of IBS typically arises after ruling out other potential causes, yet many women find their symptoms prematurely attributed to IBS.

Several factors contribute to the observed delays and inaccuracies in diagnosis. For example, specific gynaecological issues can superficially resemble gastrointestinal ailments, leading to misinterpretations of symptoms. The wording and abbreviations can also cause confusion among patients and healthcare providers alike, further complicating matters. Additionally, the current strained state of healthcare may hinder thorough evaluations during brief appointments, leaving patients feeling unheard and dismissed.

Furthermore, prior negative experiences in seeking medical care can inhibit women from pursuing further help. Padilla states that women often find themselves “gaslit” by healthcare professionals, resulting in diminished expression of their symptoms or reluctance to seek treatment altogether. Marino’s experience underscores the significance of having a female physician who demonstrated sensitivity and understanding towards her concerns, emphasising that her doctor’s intuition played a pivotal role in her diagnosis.

Padilla stresses the urgent need for improved representation in the medical field, advocating for more female doctors and people of colour in leadership and research roles. This shift is particularly crucial considering the rising incidence of IBD within Hispanic and Black communities. Meanwhile, she advises women to become educated about the symptoms of IBD and to trust their bodies when they sense something is amiss.

In summary, the disparity in diagnosis times and the prevalence of misdiagnosis for women with IBD highlight a significant issue within the healthcare system. As awareness grows, it remains vital for individuals to advocate for their own health and for medical professionals to consider the unique experiences of their female patients.