PCOS - An exploration of its many presentations

August 30, 2023

I call this review of PCOS an exploration as  I have seen it in my clinic in many different forms.

  • It is as variable as the women who have it and each case needs a different approach.
  • PCOS is a very complex, not very well understood, condition so it is important to explore it rather than think there is one simple answer.
  • If you have PCOS, some of this exploration may help you in your understanding of this syndrome.

What is it?

  • PCOS  is the short name for Polycystic Ovary Syndrome which means there are multiple cysts in the ovaries.
  • This is a reference to the many follicles on the ovaries that are not fully grown but each hold an egg. These don't often reach adulthood or lay eggs that can be fertilised.

How Common is it?

  • Women who are infertile have a higher incidence of PCOS than other women. 
  • Eight percent to thirteen percent of women in their reproductive years (late puberty to menopause) are affected. 
  • Nearly 70% of these cases have never been identified for a variety of reasons.

Who is most likely to have it?

  • PCOS is 50% more likely to happen to a woman whose mother, aunt, or sister has it. 
  • PCOS will manifest itself differently in women of various racial and ethnic backgrounds, but how it manifests itself is dependent on a number of factors, among which are:
  • Metabolic syndrome
  • Hirsuitism
  • Hyperinsulaemia and insulin resistance

Can PCOS be cured?

                     NO. It is a lifelong condition. There is no magic wand for its treatment.

Symptoms

  • Irregular menstrual cycles or no period at all
  • Weight gain or difficulty losing weight
  • Skin darkening in the creases of the body
  • Hirsutism, or hair on the face, chest, or other areas.
  • Increased acne, especially on the face and back.
  • Skin tags
  • Thinning hair
  • Possible infertility
  • insulin resistance
  • Health care ambivalence
  • Social stigma
  • Mood issues

The biomedical approach to resolving PCOS.

  • the oral contraceptive pill – this is often prescribed for contraception, to regulate the menstrual cycle, reduce excess hair growth and acne, and prevent the lining of the womb from excessive thickening.
  • medication to block hormones such as testosterone (for example, spironolactone) – these may be used to reduce excess hair growth or scalp hair loss.
  • Infertility medications – if infertility is a problem, clomiphene citrate (sold as Clomid), or aromatase inhibitors may be taken orally to bring about ovulation (egg production)
  • insulin sensitising medications – these will help people who have insulin resistance and may be useful for regulating menstrual cycles, improving ovulation (egg production) and fertility, avoiding progression to diabetes, and may assist with weight loss.
  • psychological counselling.

Is there a more holistic approach and is it a valid approach?

  • For one, the name itself is pretty unclear. It’s called poly "cystic" ovary syndrome, but many women with PCOS never develop cysts.
  • Beyond its name, many medical professionals just don’t get it. There isn’t even one set of diagnostic criteria that medical professionals agree on.
  • Also, most people don’t know that PCOS is a lifelong condition. Plenty of doctors still recommend hysterectomies as a cure or suggest that PCOS goes away after menopause.   
  • Neither is accurate, according to the National Institute of Health (NIH). If you have a hysterectomy, the hormone and metabolic issues caused by PCOS may not resolve. And plenty of women still contend with PCOS-related issues the menopause.
  • PCOS is not simple.

PCOS doesn’t really belong to one medical specialty

  • "It's an orphan syndrome that nobody is taking ownership of except the infertility community because PCOS is the most common case of infertility," Sasha Ottey of PCOS Challenge explains.
  • However, it is not just about fertility, which is why everyone from gynaecologists to endocrinologists must participate. Of course, they all tackle the situation differently and with varied replies. Many patients report that there does not appear to be a deeper knowledge or an all-encompassing therapy strategy.

Is there bias?

  • One of the main issues with PCOS is that women’s health issues aren’t taken as seriously. 
  • In fact, a paper published in Drug, Healthcare and Patient Safety  stated that, 
  • “The physical health consequences and the emotional impact of PCOS have been ignored.” 
  • If it’s affecting one in 10 women, why is this the case?
  • PCOS has historically been viewed as a female reproductive disorder, and that’s the problem,” Ottey says. Considering so much medical research is centered on white male bodies, it’s not shocking—but that doesn’t mean it’s acceptable.
  • Doctors also often enter into the patient conversation with their own racial biases.  She says that she’s experienced it herself: A doctor will walk into the room and make assumptions based on how she looks.

PCOS affects different ethnicities differently.

  • PCOS affects women of color more frequently and severely than white women, according to the American Journal of Obstetrics and Gynecology, PCOS is associated with metabolic syndrome. Because Black and Latino/Hispanic people have a higher morbidity and mortality due to cardiovascular disease and diabetes, “Understanding any racial and ethnic differences in metabolic syndrome among women with polycystic ovarian syndrome is important for prevention strategies.”
  • The study also found that Black women and Mexican-Americans have greater hyperinsulinemia and insulin resistance compared to white women. And yet the research is limited and many patients who are women of colour feel they are not being treated properly.
  • Black women specifically have higher rates of hirsutism (which is excess hair growth) and obesity, as well as a lower likelihood of getting pregnant. And yet, Black women, in particular, have less access to fertility treatments.

Losing weight is not a magic cure for PCOS

  • PCOS doesn’t present the same way in every person, and yet doctors often resort to recommendations for weight loss or dietary changes time and again, even if the patient already has healthy lifestyle habits and has already exhausted those approaches to treating the disorder without results.
  • Consider the issue of Body Mass Index (BMI).  More recently, people are beginning to understand that BMI is in no way wholly indicative of health. Yet some East Asian women with smaller frames are not assessed for PCOS simply because their BMI is lower or they don’t "look" like there could be an issue, Ottey points out.

More about PCOS next week.

Further reading

https://pcoschallenge.org/pcos-advocacy-day/speakers/sasha-ottey/

Abusailik MA, Muhanna AM, Almuhisen AA, Alhasanat AM, Alshamaseen AM, Bani Mustafa SM, Nawaiseh MB. Cutaneous manifestation of polycystic ovary syndrome. Dermatol Reports. 2021 Sep 15;13(2):8799. doi: 10.4081/dr.2021.8799. PMID: 34659671; PMCID: PMC8451069.

Available at https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8451069/#

Katherine Van Hise, M.D., Erica T. Wang, M.D., et al. Racial and ethnic disparities in polycystic ovary syndrome. Fertility and Sterility® Vol. 119, No. 3, March 2023

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