Case Study 3 - Breaking the Silence: PCOS, Racial Bias and the Fight for Better Care

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.

Case Study 2 - Living with PCOS: Pain, Dismissal and Self-Advocacy

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.

Case Study 1 - Navigating PCOS with Cultural Barriers and Delayed Support

This case study interview was conducted on Thursday 10th July 2025

Interviewee: B.AA / 30-35 yrs old / Black British African / SouthEast London

1.0 The Diagnosis Journey

1.1 B.AA is a Black British African woman from London who began experiencing symptoms of PCOS in her early teens. At the age of 12, she entered puberty and noticed that her menstrual cycles were significantly longer and more irregular than expected. Concerned about these changes, her mother booked an appointment with their GP when B.AA was 13 years old. During that consultation, the GP advised that her irregular cycles were likely due to her weight and recommended she cut out dairy and focus on weight loss. There was no further investigation or explanation offered at that time.

At age 15, following a second GP visit, B.AA was referred for an ultrasound scan. The results confirmed the presence of cysts on her ovaries, and she was formally diagnosed with polycystic ovary syndrome (PCOS). However, the diagnosis was not clearly explained to her. She recalls being unfamiliar with the condition and receiving little information or support. Instead, she was told that PCOS was common among women from her ethnic background and that her symptoms would improve with weight loss.

1.2 B.AA distinctly remembers how heavily the conversation was focused on her weight. The clinical team did not offer comprehensive information about PCOS or discuss any treatment options beyond lifestyle changes. As a result, she was left feeling humiliated, ashamed, and blamed for her condition. She internalised the belief that her weight was the sole cause of her diagnosis, which significantly affected her confidence and emotional well-being during a critical stage of adolescence.

2.0 Impact of Race & Ethnicity

2.1 Throughout her PCOS journey, B.AA felt that her experiences were often dismissed or minimised, particularly in interactions with white British healthcare professionals. She perceived that, because she did not present as visibly distressed (either physically or emotionally) her concerns were not taken seriously. In several consultations, she noted that the focus remained solely on her weight and BMI, with little acknowledgement of how her racial or cultural background might inform her health experience. This lack of cultural sensitivity left her feeling unseen and unsupported.

One experience in her twenties particularly stood out. During a consultation regarding her ongoing struggle with PCOS-related weight gain, B.AA asked her GP for a referral to a dietitian to help with her weight management. When she shared her goal of losing 5–6 stone, the GP responded with a dismissive laugh and said, “Be realistic.” The comment left her feeling ashamed, undermined, and judged. She questioned whether the response would have been the same had she been a white British woman.

This interaction (and others like it) contributed to B.AA’s growing sense that her ethnicity, cultural context, and lived experience were not being taken into account in her care. She felt her attempts to advocate for herself were often met with indifference or condescension, further alienating her from a system that should have been supportive.

2.2 B.AA’s experiences with her family and community mirrored the sense of isolation and misunderstanding she faced in healthcare settings. At the time of her diagnosis, the only person she confided in was her mother, despite having a younger sister at home. Her mother later disclosed the diagnosis to B.AA’s father (from whom she had been separated since B.AA was three years old) when B.AA was 16.

Instead of offering support, her father responded with suspicion and blame, accusing her of being sexually active and implying that this was the cause of her condition. At the time, B.AA had not been sexually active, and the accusation left her feeling confused, ashamed, and deeply hurt.

These experiences contributed to a broader sense of not being believed or supported. B.AA felt that those she should have been able to trust, both in healthcare and within her family, made her feel responsible for her condition. The absence of compassion and the culturally insensitive responses, even within her religious community, left a lasting impact on her emotional well-being and spiritual identity.

B.AA shared that she consulted her maternal relatives including her grandmother, mother, and two aunts to explore any family history of PCOS. While none of them had been diagnosed with the condition, all four experienced fibroids either during pregnancy or following childbirth, which required medical intervention and removal. Due to this family history, B.AA raised concerns with her GP on multiple occasions to check for fibroids. Clinical investigations confirmed that she did not have fibroids.

Although B.AA does not share this specific diagnosis, she recognises a pattern of reproductive health issues on her maternal side. She perceives a generational link to womb-related conditions within her family, which has contributed to her broader understanding of her own health and sense of inherited vulnerability.

2.3 In her early 20s, B.AA returned to her GP to seek support for managing her irregular menstrual cycles. She was prescribed the oral contraceptive pill, which was recommended as a way to regulate her cycle and alleviate some of the symptoms of PCOS. While she initially followed this treatment, she later reflected on the long-term implications of having to take medication daily. Over time, she alternated between the oral contraceptive and the contraceptive injection to manage her symptoms.

During a follow-up appointment, B.AA raised concerns about finding a more sustainable, long-term solution that didn’t rely on hormonal contraception. In response, healthcare professionals advised her to return when she was ready to have children, at which point they would explore fertility options. However, she was also told that many women with PCOS are unable to conceive, and was cautioned not to set her expectations too high. This experience left B.AA feeling discouraged and unsupported. Rather than being offered comprehensive care or a personalised plan, she felt that the conversation around her reproductive

future was prematurely closed off, reinforcing a sense of hopelessness and lack of agency over her condition.

2.4 B.AA reflected that during her diagnostic journey, her cultural background and family medical history were not meaningfully considered. She noted that healthcare professionals did not ask about generational patterns or related conditions within her family, which could have provided a more informed and tailored approach to her care. Instead, the guidance she received felt generalised — a “one-size-fits-all” approach that did not acknowledge the nuances of her lived experience.

While B.AA did not experience overt stereotyping or direct medical racism, she did feel that her early concerns and symptoms were often dismissed or downplayed. This contributed to a sense that her voice was not fully heard or validated during the critical early stages of her healthcare journey.

3.0 Cultural & Community Factors

3.1 From the age of 16, B.AA began experiencing hirsutism, noticing coarse hair growth on her chest, breasts, and chin. This deeply affected her confidence, particularly when her mother would make light-hearted yet hurtful comments such as, “I always knew I was meant to have a son.” These remarks reinforced B.AA’s internalised shame, as she already felt self-conscious about her appearance. She attempted to manage the hair through shaving, waxing, threading, and depilatory creams, which led to increased skin sensitivity, irritation, and scarring. Alongside this, she experienced severe hormonal acne.

During consultations in her early 20s, B.AA was prescribed oral contraceptives and later the contraceptive injection to regulate her menstrual cycle. Although these treatments provided some relief, she expressed concerns about relying on birth control indefinitely. When she questioned the long-term treatment plan, healthcare professionals advised her to return when she was ready to conceive. However, she was also cautioned not to “set her expectations too high,” as many women with PCOS struggle with fertility. This comment, while possibly intended as a precaution, felt discouraging and insensitive to B.AA.

Her mother, upon learning about the potential fertility challenges associated with PCOS, responded with disappointment. In their cultural context, the ability to conceive and bear children is considered a mark of honour and womanhood, adding another layer of pressure to B.AA’s experience. These expectations caused B.AA to feel further guilt and shame, particularly when considering treatments like hormonal contraception, which she did not disclose to her mother due to religious and cultural concerns surrounding premarital sex.

Between the ages of 20 and 22, B.AA successfully lost 5–6 stones (approx. 31–38 kg) and reported this achievement to her GP, expecting improvements in her cycle based on earlier medical advice. However, no significant changes occurred, and she was simply told that “not every woman is the same.” The lack of follow-up care and support was disheartening.

Socially and culturally, B.AA found it difficult to discuss her condition. Her hirsutism, irregular or absent periods, and the stigma associated with infertility created barriers to confiding in friends or extended family. She feared judgment and felt misunderstood, often avoiding even basic conversations with her mother about her menstrual cycle.

3.2 Healthcare system barriers also significantly impacted B.AA’s journey. She noted long waiting times for GP appointments, rushed consultations due to the 15-minute time limit, and delayed referrals to specialists. It took over a year to see a gynaecologist, and several appointments were cancelled, leaving her feeling deprioritised and invisible within the system.

A particularly distressing incident occurred during an ultrasound scan conducted by a young Black male sonographer. During the procedure, he joked, “Oh! Do you know that you are pregnant?” and then laughed, saying he could see a fetus shape on the screen. Although he quickly retracted the comment, B.AA found the joke highly inappropriate, especially given her condition and personal anxieties around pregnancy. She later expressed her disappointment, especially as she had expected more sensitivity from a practitioner who shared her cultural background.

In an effort to access better care, B.AA obtained private health insurance, assuming this would offer faster and more comprehensive support. However, she soon discovered that pre-existing conditions such as PCOS were excluded from coverage. Consultations and scans would have to be self-funded, with costs amounting to thousands of pounds—another substantial barrier to effective care.

3.3 Reproductive health and conditions like PCOS are not commonly discussed within B.AA’s cultural community. At the time of her diagnosis, there was limited awareness or dialogue about PCOS within her family. However, as B.AA has grown older, she has made a conscious effort to open up conversations with her younger sister in hopes of breaking the cultural taboo and fostering greater transparency.

It was only later that B.AA discovered that her mother had experienced fibroids—a condition also present in her grandmother and aunts. These reproductive health issues had never been openly discussed within the family, and each woman had navigated her own diagnosis and treatment in silence. This lack of openness contributed to a generational gap in awareness and support around women’s health.

3.4 Within Ghanaian culture, the onset of menstruation is traditionally marked by a celebratory ceremony. Shortly after a girl’s first period, female elders in the community gather to honour her transition into womanhood and share wisdom for her journey ahead. B.AA recalls her own ceremony fondly, but it was soon followed by confusion and concern as she began to realise that her menstrual cycle did not align with what she had been told to expect. This cultural expectation of normality, paired with the silence around reproductive health challenges, left her feeling isolated and unsure.

4.0 Social Relationships, Disclosure & Community Support

4.1 B.AA did not begin discussing her PCOS diagnosis with friends until her late twenties. Prior to that, the stigma, lack of understanding, and personal shame around her symptoms made it difficult for her to open up. In romantic relationships, B.AA found it particularly challenging to explain how the condition could impact intimacy and her overall sexual health. She shared that during periods of sexual activity, she would often resume taking the contraceptive pill or receive the injection in an effort to manage her symptoms and maintain a healthy relationship with her partner.

4.2 One pivotal moment in her journey occurred when she was around 22 or 23 years old and regularly attending the gym. During this time, she would wear long weaves and makeup to conceal facial hair, shaving scars, and bumps caused by hirsutism. After one of her classes, a woman approached her and, in a sensitive and non-judgmental way, asked if B.AA had PCOS. Surprised, B.AA confirmed she did. The

woman revealed that she also had PCOS and showed B.AA the marks and pigmentation on her own face. She then suggested laser hair removal as a possible treatment for the hyperpigmentation and offered a recommendation based on her own experience.

Encouraged by this encounter, B.AA pursued laser hair treatment despite the high cost—approximately £300 for the lower face alone. Though it was a significant financial investment at a young age, she saw a marked improvement in her skin and confidence. B.AA still remembers that woman with gratitude, as her kindness and openness were instrumental in helping her address one of the most visible and emotionally distressing symptoms of PCOS.

4.3 This experience at the gym was a turning point. It made B.AA realise that others shared her condition and that connection through shared experience could be powerful. Inspired, she took to Twitter and publicly disclosed her PCOS diagnosis for the first time. The response was overwhelming. Friends and acquaintances, many of whom she didn’t know were living with PCOS, began reaching out. They shared their own challenges—ranging from hair loss and severe menstrual pain to irregular cycles—and expressed how isolated they had felt.

The volume and depth of the responses highlighted how many people were silently managing the condition alone. This engagement motivated B.AA to become more vocal and involved in raising awareness. It marked the beginning of her social media advocacy and desire to help others feel less alone in their PCOS journey.

5.0 Body Image & Weight-Related Pressures

5.1 B.AA has felt pressure about her weight because you are always told the reason for PCOS is because of your weight. She felt pressure about her body image especially when it came to facial hairs and hormonal acne.

6.0 Support and Information

6.1 B.AA did not initially have access to reliable information about PCOS and only began to understand the condition once she took the initiative to educate herself. Her journey toward gaining knowledge began when she enrolled in a programme led by a South Asian PCOS coach. The programme was designed specifically for people of colour, which helped B.AA feel more seen and understood in a culturally relevant context.

6.2 In addition, B.AA attended women’s health events focused on reproductive conditions such as PCOS and endometriosis. These spaces offered her the opportunity to engage with others facing similar challenges and to speak directly with medical professionals. At one such event, she was particularly impacted by a doctor who held an open Q&A session. The doctor not only offered practical advice on how to advocate for oneself within the healthcare system but also shared candidly about the limitations of medical training when it comes to PCOS.

The doctor acknowledged that many healthcare practitioners receive minimal education on PCOS and, as a result, are often unable to provide comprehensive support. This medical professional had taken it upon

themselves to pursue additional training to better serve patients with the condition—an act B.AA found inspiring and affirming. She appreciated the transparency, empathy, and actionable guidance provided in an informal and approachable setting.

6.3 Reflecting on her experiences, B.AA shared three key areas where she believes healthcare must improve:

1. Acknowledge the complexity of PCOS – Understand that the condition can be frustrating, prolonged, and emotionally distressing, even when symptoms are not externally visible.

2. Avoid dismissiveness based on appearance – Recognise that a lack of visible pain or distress does not equate to a lack of seriousness.

3. Expand treatment options – The common solution of prescribing birth control as a blanket treatment is insufficient. B.AA has researched the side effects and believes this approach may offer temporary relief but is not sustainable or healthy in the long term.

She believes a more compassionate, informed, and patient-led approach is essential in addressing the real-life impact of PCOS.

7.0 Looking Ahead

7.1 B.AA’s advice to other women of colour navigating PCOS is to not rely solely on doctors for answers. She feels that the physical and emotional wellbeing of women with PCOS is often not prioritised within the healthcare system. As a result, she encourages individuals to take ownership of their health, become well-informed, and make lifestyle changes that support long-term management of the condition.

B.AA has adopted a holistic approach to managing her PCOS, working with a holistic health coach who helped her understand the root causes of hormonal imbalance. Through this guidance, she became more educated about her body, the condition, and practical steps she could take to improve her wellbeing. She advises others to:

● Be intentional about nutrition and dietary choices.

● Incorporate fitness strategies that are effective for PCOS—such as reducing excessive cardio and focusing on high-intensity interval training (HIIT) to support insulin sensitivity.

● Explore natural remedies and herbal support—such as peppermint—that may aid hormonal balance.

She notes that, since making these changes, she has seen a positive shift in her menstrual cycle over the past six months. However, she emphasises that these results take time and consistency. Her key message: do your own research and advocate for your body.

7.2 From a healthcare improvement perspective, B.AA believes the system would benefit from implementing a sustainable and personalised investigative pathway for PCOS patients. This could include:

● Comprehensive blood testing to assess vitamin levels and hormone profiles.

● Regular ultrasound scans to monitor ovarian and uterine health.

● A consolidated, patient-specific approach that acknowledges the unique presentation of PCOS in each individual.

She strongly advocates for tailored healthcare support, recognising that no two people with PCOS are the same.

In addition, B.AA calls for reduced-cost period products for those who experience prolonged or heavy bleeding—an often overlooked burden of the condition. She hopes to see a future where PCOS care is more empathetic, accessible, and personalised for every woman, particularly those in marginalised communities.