If you have been diagnosed with PCOS, then you probably already know that this complex endocrine condition typically comes with a number of health implications, such as a higher risk of type 2 diabetes. But what you may not know - because this issue is not given much attention in the medical community - is that women of color, specifically Black women, appear to have “increased risk for metabolic syndrome and cardiovascular disease compared to white women”.
Essentially, this means there are racial and ethnic differences in how PCOS manifests itself and what prevention strategies should be employed to reduce serious long-term health issues. People of color may go undiagnosed for longer periods of time (or forever!) due to these biases from providers & lack of access to care which may be a reason for the increased risk of cardiovascular complications. Unfortunately, the above problem is only compounded by “healthcare gaslighting,” a term used to describe the way women’s concerns, pain, and questions are often dismissed or ignored outright by medical practitioners and the healthcare industry in general.
So let’s dive into: 1) how race impacts PCOS, and 2) how to get the care you deserve.
Race and PCOS
At the best of times, PCOS can seem like an ‘invisible illness’ as women’s irregular cycles, fertility concerns, and physical symptoms are shrugged off. Indeed, being prescribed birth control (though a wonderful resource for women who want and need it), is often a catchall ‘solution’ which does not investigate the root cause - such as PCOS - behind a woman’s missed periods or irregular cycle.
It can only be when a woman comes off birth control and struggles to get pregnant that she is eventually evaluated for PCOS. Indeed, Health Line reports that it takes an average of 2 years and 3 doctors for a woman to be diagnosed with PCOS.
This problem is made only worse when accounting for race. According to Medical News Today, PCOS often goes undiagnosed and overlooked in Black women because it produces “silent” metabolic symptoms, such as insulin resistance and impaired glucose metabolism. In this article, one doctor explains that doctors who use metabolic syndrome as part of their criteria for diagnosing PCOS - despite this going against guidelines - could be giving incorrect diagnoses if a patient looks leaner, seems to have normal glucose metabolism, or the provider orders the wrong type of test.
Receiving the correct diagnosis can become even further complicated when accounting for how PCOS manifests in women of different racial backgrounds. One systematic review of 35 studies found that the clinical phenotype, and even some physical symptoms, varied depending on ethnicity. For instance:
- Black women with PCOS had a better lipid profile but higher blood pressure and cardiovascular risk
- Black and Hispanic women with PCOS had higher obesity rates as well as hirsutism or excess body hair
- Black, South Asian, Middle Eastern, and Hispanic women with PCOS all had higher prevalence of insulin resistance than white women with PCOS
Socio-economic factors also come into play, with Black women having 42% to 48% lower odds of being diagnosed.It may come as no wonder, then, that delays in a PCOS diagnosis can come from not only trying to find a receptive healthcare provider, but women of color’s resulting anxiety about seeking medical advice only to not be heard.
How to get the care you deserve
In order to share some advice on how to find the care you deserve, it is worth touching further on what healthcare gaslighting can look like. It typically includes women’s (and especially women of color’s) physical pain or concerns being attributed to mental health disorders (such as anxiety and depression), even when that is not the case; alternatively, it can be a complete dismissal of what you are worried about or a general refusal to acknowledge your pain on the scale you know it to be.
So how can you get the care you need?
Though it can be difficult to completely avoid this phenomenon, there are some things you can do to avoid being gaslighted:
- Search online reviews for the clinician or healthcare provider you see
What do reviews say? Does this doctor listen and take the time to understand his or her patients? Do reviews speak to their compassion and empathy, or is this doctor overbooking and undeserving their patients?
- Investigate their specialty
If a doctor has a special interest, or a lot of experience, in diagnosing endocrine disorders in general or PCOS in particular, then they may have an increased knowledge as to all the possible facets of PCOS.
(Allara Health providers all specialize in PCOS, obstetrics, or reproductive endocrinology in both their practice and their research!).
- Write down and keep track of your symptoms
Your experience matters. Your symptoms are worth understanding and investigating. That being said, try to keep track (via the Notes app in your phone, a period tracker, or even pen and paper) dates, details, and potential triggers for your symptoms. Use this as an objective history of your first symptoms and present it to your doctor if necessary.
- Speak with family members
This advice is on two fronts:
First, speaking with your female family members and asking them about any potential markers of PCOS (or known family history of PCOS) can be useful in helping you reach a diagnosis.
Second, whether it be family members or a trusted friend, it is important to speak with others about your symptoms. That way, if you do get medically gaslighted, then you have another person who can remind you of your experience, and validate any doubts you have.
- Learn as much as you can about PCOS and its manifestations
As cliché as it sounds, it’s also true: knowledge is power. With information about non-typical symptoms of PCOS and how race can impact your PCOS experience, you may be able to better advocate for yourself within the healthcare system.
Remember: you deserve answers, and you deserve a correct diagnosis.
Interested in learning more? Find out how PCOS is diagnosed, here.
Allara Health provides personalized treatment for hormonal, metabolic & gynecological conditions that utilizes a holistic plan that merges nutrition, lifestyle, medication and supplementation, and ongoing, expert support to heal your body.