This case study interview was conducted on Monday 4th August 2025

Interviewee: S.M / 30-35 yrs old / Black British African / North London

This case study is part of a national effort to gather lived experiences for the UK’s first-ever Parliamentary Inquiry into PCOS care, launching in September 2025. The inquiry aims to explore the realities of diagnosis, access to care, cultural and health inequalities, and the psychological toll of living with PCOS. We hope to highlight gaps in the current system and push for meaningful policy change. Each case study contributes a vital perspective that will inform the inquiry’s recommendations.

1.0 The Diagnosis Journey

1.1 C.M began experiencing irregular periods and facial hair growth at the age of 21. Concerned about these symptoms, she booked an appointment with her GP. During the consultation, her doctor raised the possibility of Polycystic Ovary Syndrome (PCOS) and referred her for a blood test. However, when the blood test results came back within the normal range, she was told they could not confirm a PCOS diagnosis. Despite this, C.M remained persistent in raising her concerns and advocating for further investigation. Eventually, she was referred for an ultrasound scan to assess whether her ovaries were polycystic. She recalls that it took approximately six months from her initial appointment to receive an official diagnosis.

1.2 C.M recalls that her condition was not adequately explained to her at the time of diagnosis. The key messages she remembers were focused on infertility and her weight, which was framed as the likely cause of her symptoms. Initially, she assumed PCOS was solely an ovarian issue due to its name, only learning later that it is fundamentally a hormonal imbalance. The lack of information and clarity about the condition left her feeling fearful and overwhelmed particularly when infertility was introduced as a long-term concern without proper context or support.

2.0 Impact of Race & Ethnicity

2.1 S.M’s first consultation was with a Nigerian doctor who was proactive and empathetic. It was this doctor who first raised the possibility of Polycystic Ovary Syndrome (PCOS) based on S.M’s symptoms. At the time, S.M did not experience any overtly negative interactions related to her racial or ethnic identity. However, she found it frustrating that she had to advocate for herself consistently over a six-month period before receiving a formal diagnosis.

Earlier this year, nearly 10 years after her diagnosis, S.M requested a full health check, including an ultrasound to review the condition of her ovaries and any other relevant factors. She received significant pushback and was repeatedly questioned about the reasons for her request. S.M found this line of

questioning unnecessary and dismissive, especially given that she simply wanted to monitor her health, something she felt entitled to. She reflected on whether this response would have been the same had she been a white British woman, noting that Black women often face increased scrutiny and questioning when advocating for their health needs.

2.2 S.M also highlighted that her weight was frequently brought up in conversations about her condition, often overshadowing other relevant factors like hormonal imbalances. When she explained her reasons for wanting health scans, the responses she received frequently included questions about whether she was trying to conceive. She felt this was an unnecessary assumption and did not align with her intentions, adding that this reproductive-focused narrative limited the broader conversation about her health and wellbeing.

2.3 Although her nurse was also of Nigerian background, S.M did not feel this translated into a culturally sensitive or tailored experience. She felt that despite shared ethnicity, the advice and support lacked cultural understanding or representation, particularly in areas like diet, mental health, and lifestyle.

3.0 Cultural & Community Factors

3.1 Growing up in an African household, S.M shared that reproductive health was not openly discussed. This cultural silence contributed to her decision not to speak up about her irregular and painful periods during her adolescence. As a result, she had to navigate and manage her condition on her own, often feeling that her symptoms were culturally dismissed or downplayed.

3.2 S.M expressed dissatisfaction with the support she received from the healthcare system, stating that it felt “broken” in her experience. Earlier this year, she requested a routine health check, including a scan, but the appointment was delayed for two months. When it finally occurred, the consultation was limited to just 15 minutes, leaving her feeling rushed and unsupported. In addition to institutional barriers, she also faced challenges within her family. She noted that conversations around periods are often approached with discomfort or sexualised undertones, and frequently met with dismissive remarks such as, “it’s not that serious.” S.M sees the lack of open communication around reproductive health in many Black and Brown households as a significant barrier to early understanding and support.

3.3 S.M has also experienced pressure around weight fluctuations from within her household. Weight gain or loss is often commented on directly, which has negatively impacted her self-esteem. She described it as a “constant battle” and shared that these comments have made her more self-conscious about her appearance. As a result, she regularly attends the gym to manage her weight—not only for her physical health, but also to protect her emotional wellbeing in a culturally critical environment.

4.0 Support and Information

4.1 S.M shared that when working with personal trainers who provide meal plans to support weight management, the food options often lack cultural relevance. This disconnect has made it more difficult for her to maintain a healthy lifestyle that supports the management of her PCOS. She also noted that even among PCOS-focused dieticians, there is limited visible diversity and representation online, which contributes to feelings of exclusion. S.M raised concerns about the NHS’s BMI guidelines, expressing that they do not account for the body composition of different ethnic groups. For example, she pointed out that South African women typically have naturally fuller figures—hips, bust, and waist—which are not reflected in standard BMI metrics. To find support that aligns with her cultural needs, she has had to be intentional in seeking out culturally aware practitioners, such as health coaches with lived or shared experience.

4.2 To bridge the gap in support, S.M took the initiative to launch her own social media platform advocating for women living with PCOS. Through this, she has been able to connect with like-minded individuals and communities, which has helped her feel validated and supported in her journey. She explained that if it weren’t for these online networks, she would likely feel isolated, as she doesn’t have many friends who also have PCOS. For S.M, support isn't readily available, it’s something you have to actively seek out, particularly online.

4.3 S.M expressed frustration over how difficult it is to navigate the healthcare system while trying to take control of her health. Earlier this year, when she requested an ultrasound to check the status of her ovaries more than a decade after her initial diagnosis, her Nigerian GP dismissed the request with the comment: “So what? We already know you have PCOS.” This response left her feeling invalidated. At age 30, she found herself having to advocate for her reproductive health once again, years after her initial diagnosis. S.M believes that women’s health—particularly PCOS—is often met with a lack of empathy and is not prioritised within healthcare systems. She also feels that PCOS remains an under-recognised condition in part because it disproportionately affects Black and Brown women, while conditions like endometriosis, which receive comparatively more attention, are statistically more prevalent among white women.

5.0 Looking Ahead

5.1 S.M’s advice to other Black and Brown women living with PCOS is to continue advocating for themselves, especially when navigating barriers within the healthcare system. She encourages persistence, reminding others not to let their diagnosis define or limit them. S.M also highlights the importance of connecting with supportive communities, where shared experiences can help make the condition more manageable. However, she offers a word of caution regarding misinformation, especially online, advising women to be mindful of medical inaccuracies and overwhelming, unverified information.

5.2 S.M believes that the healthcare system must move beyond a default reliance on contraceptives as the primary form of PCOS treatment. She advocates for a broader and more personalised approach, including options such as anti-inflammatory diets, holistic interventions, and culturally relevant lifestyle guidance. She stresses the urgent need for more dedicated research into alternative treatments and long-term management strategies that reflect the diverse needs of women with PCOS.