This case study interview was conducted on Monday 21st July 2025
Interviewee: C.R / 30-35 yrs old / Black British Caribbean / South East London
1.0 The Diagnosis Journey
1.1 C.R began menstruating at age 15 and recalls her periods being immediately heavy and painful. She assumed this was normal. She recounts an incident during a school trip to a university open day, where she woke up in her dorm room to find her bed soaked in blood due to excessive bleeding. Following that episode, she did not menstruate again for six months.
At 17 years old, C.R was in her English Literature class when she began experiencing severe menstrual cramps. The pain was so intense that she left class to visit the college counsellor's office. Shortly after arriving, she fainted. A female paramedic was called to attend to her. During their conversation, the paramedic empathised with C.R's symptoms, sharing that she had similar experiences and suggested that C.R may have Polycystic Ovary Syndrome (PCOS). She advised her to seek medical investigation.
C.R reflects that had it not been for the presence of a female paramedic that day, she likely wouldn’t have learned about PCOS or considered it as a possible explanation for her symptoms particularly since she had grown used to experiencing extremely painful periods.
At the age of 18, she underwent an ultrasound scan and was asked about her symptoms. It was then that she received a formal diagnosis of PCOS. Prior to that, the only advice she had received for managing her symptoms was from a teacher, who recommended trying prune juice as a home remedy.
1.2 C.R’s understanding of her diagnosis initially depended entirely on the information provided by her healthcare professionals. At the time, she was given a basic leaflet about PCOS, which she recalls as being overly clinical and fear-inducing. The leaflet heavily emphasised infertility risks and the importance of weight loss, which C.R found distressing and unhelpful, especially given her young age and lack of prior knowledge.
Despite not being sexually active at the time, she was prescribed contraceptive medication as the primary method to manage her symptoms. This led to feelings of confusion, isolation, and frustration. C.R describes this period as overwhelming, with little emotional support and minimal clear guidance on how to understand or manage her condition effectively. When C.R began taking contraception at age 18/19 and went back for a review, that particular contraception made her have high blood pressure. This treatment was not ideal for C.R, after this there was no other treatment options to give her.
2.0 Impact of Race & Ethnicity
2.1 Between the ages of 20 and 21, C.R visited her GP to raise concerns about persistent fatigue, vomiting, and other health issues beyond her PCOS diagnosis. She emphasised that PCOS does not only affect individuals during their menstrual cycle but can also significantly impact them during ovulation and other points in the hormonal cycle. At the time, C.R was experiencing multiple ongoing symptoms and sought medical advice. After relaying her concerns in detail, she was told by her GP that her issues were likely psychological, as her test results did not indicate any immediate problems.
C.R expressed frustration at this response, believing that Black and Brown women are often not taken seriously or believed when reporting pain or health concerns. She described feeling dismissed and invalidated, an experience she attributes in part to racial and ethnic bias in healthcare settings.
She also recalled showing signs of underlying health issues from an early age, such as insulin resistance, which in her case manifested as Acanthosis Nigricans which are dark patches of skin commonly found around the neck and back. This is a known symptom associated with PCOS. C.R noted that she had these symptoms long before her formal diagnosis at age 18 but they were not identified or addressed by healthcare professionals.
C.R believes that there was a consistent lack of urgency in how her health was managed, both before and after her PCOS diagnosis. She feels that earlier intervention and recognition of symptoms particularly those visible on her skin could have led to a timelier diagnosis and better management of her condition.
2.2–2.4 Experiences with Diagnosis, Cultural Relevance & Self-Advocacy
2.2 C.R highlights that weight was heavily emphasised throughout her diagnosis and treatment journey. She was repeatedly told that her symptoms would improve if she lost weight. In response to this advice, C.R did lose weight at various points in her journey. However, she observed no significant improvement in her symptoms and now questions the assumption that weight loss is a universal solution for managing PCOS. She expressed frustration that this guidance often feels like a blanket response from healthcare professionals, rather than one rooted in a personalised understanding of her health.
2.3 C.R also shared that she did not feel culturally understood or represented during her diagnosis experience. The dietary advice provided by healthcare professionals lacked cultural relevance and did not account for the traditional foods common within her community. More recently, she joined an organisation that supports people with PCOS by teaching them how to prepare cultural foods in healthier ways to help alleviate symptoms. She found this approach far more relatable and effective, though it was something she had to discover outside the formal healthcare system.
2.4 Throughout her PCOS journey, C.R has had to advocate for herself in order to be heard. She believes that had she not been persistent in voicing her pain and concerns, and had she not consistently applied pressure on healthcare professionals, her needs would have continued to be overlooked. Her experience underscores the critical importance of self-advocacy, particularly for women of colour navigating complex reproductive health conditions like PCOS.
3.0 Cultural & Community Factors
3.1 C.R reflected on how her Caribbean upbringing influenced her experience seeking support. She shared that her mother was often dismissive of her pain, frequently stating: “I had painful periods—get over it.” C.R felt that there was a generational mindset of normalising pain and suffering, which her mother expected her to adopt. This lack of empathy created emotional distance, making C.R feel unsupported within her immediate family environment. She noted that this cultural minimisation of pain can negatively affect mental health, especially when compounded by the emotional and physical toll of PCOS. C.R believes the condition can trigger anxiety, low self-esteem, and depression, and should be recognised as both a physical and mental health issue.
3.2 C.R also recalled a barrier she encountered when trying to access specialist care. During the COVID-19 pandemic, she made multiple attempts to book an appointment with an endocrinologist, which proved difficult due to high demand. When she eventually secured a virtual appointment, the consultation lasted only 10 minutes and felt rushed and impersonal. She was told she would need to book another appointment to continue the conversation, despite the original issue being unresolved. This left her feeling dismissed and unsupported, reinforcing her concerns about the lack of continuity and patient-centred care.
3.3 Within her Caribbean community, comments about body image, particularly weight gain or loss are common. At a time when C.R was attempting to lose weight on medical advice, she faced unsolicited remarks from family members that made her feel self-conscious and emotionally distressed. As a result, she began to withdraw socially and avoid family gatherings, which had a further impact on her wellbeing.
C.R also spoke about external pressures related to fertility. Due to frequent family questioning about when she would marry and have children, she proactively sought clarity from her healthcare providers by requesting tests such as an egg reserve check or pelvic examination. However, she was told these services were not available through the NHS unless there was a clinical indication of infertility. Instead, she was advised to seek private fertility care, which she found disheartening. This experience led her to feel that there is a lack of duty of care for women of colour with PCOS, especially regarding long-term reproductive planning.
4.0 Support and Information
4.1 C.R shared that attending community-led events, engaging in networking spaces, and connecting with community leaders through social media particularly those focused on PCOS and endometriosis. They helped her feel supported, seen, and heard. However, she notes that this support is a recent development. Earlier in her diagnosis journey, such spaces were not readily accessible or visible. C.R expressed disappointment that the mainstream healthcare sector lacks cultural competency and often overlooks the lived experiences of Black and Brown communities. This gap, she says, is what prompted many within these communities to create their own safe spaces to educate, advocate, and uplift others who share similar experiences and identities.
4.2 C.R also stressed the importance of healthcare providers recognising the co-existence of other health conditions alongside PCOS. In her case, she lives with Hidradenitis Suppurativa (HS), a chronic skin condition, and experiences severe PMS symptoms leading up to her menstrual cycle. She
believes that PCOS care should reflect a holistic understanding of patient health, including physical and mental health challenges that may not be directly tied to reproductive health.
C.R drew a comparison to diabetes care, where patients are automatically enrolled in routine eye and foot checks to monitor for potential complications. She believes a similar wraparound care model should be adopted for PCOS, where associated symptoms and comorbidities are proactively monitored and supported.
In addition, she highlighted the emotional toll of symptoms like facial hair and scarring, and advocated for treatments such as laser hair removal to be recognised and included as part of the treatment offering for PCOS patients within the healthcare system.
5.0 Looking Ahead
5.1 C.R’s advice to other women of colour navigating PCOS is to educate themselves as much as possible about the condition and to actively seek out PCOS and reproductive health communities, particularly those led by and for people of colour, which are often found through social media platforms. She shares her aspiration to launch her own advocacy platform to support others facing similar challenges.
C.R strongly encourages others to advocate for themselves consistently, to be persistent when speaking to healthcare professionals, and to not accept dismissive responses or medical gaslighting. She also advises individuals to explore what health benefits and medical incentives may be available through their workplace, as these may support access to services or treatments not readily offered by the NHS.
5.2 C.R believes that PCOS should be treated with the same level of seriousness and structured care as diabetes. She feels the condition is not prioritised or managed with the urgency it requires. In her view, once a diagnosis is made, patients should be immediately referred to a specialist who can support their ongoing care and reduce the need for repeated GP visits. Establishing a long-term relationship with a knowledgeable specialist, she believes, would significantly improve patient outcomes and reduce the emotional and physical burden many individuals currently experience.