Why did it take so long to get diagnosed with PCOS?

Diagnosis of polycystic ovary syndrome (PCOS) can be tricky, many women affected by PCOS are going undiagnosed and therefore are unaware of how to better work with hormonal challenges they may be experiencing. Polycystic Ovary Syndrome is given as a diagnosis if at least two of the following clinical findings are present and other known metabolic or endocrine disorders that could cause similar symptoms are ruled out. (a diagnosis of exclusion)

  • Blood test showing high levels of androgens (testosterone or androstenedione) or visual signs of excess facial or body hair, acne, or hair loss of the scalp. 
  • Irregular ovulation or menstrual cycle length
  • Ultrasound imaging of several cysts on the ovaries (pearl like appearance)

Women may also have elevated anti-mullerian hormone levels and follicle stimulating hormone to luteinizing hormone level ratio (FHS:LH) that is out of range. Some inclusion criteria guidelines also include insulin sensitivity as a diagnostic feature, but the test for it is not typically done (oral glucose tolerance test) unless screening for diabetes was being conducted due to other presenting symptoms, such as weight gain. 

What do you mean I don’t have to have cysts to have PCOS?

Polycystic ovary syndrome was first identified in women who presented with a combined presentation of excess body and facial hair growth (hirsutism), overweight (obesity), the lack of  their menstrual cycle (amenorrhea) and ultrasound imaging of small cysts on both ovaries (enlarged bilateral polycystic ovaries). Since then, the diagnosis of this syndrome has expanded to include a broader presentation of combined hormonal and metabolic imbalances. In fact, you don’t even need to have cysts on the ovaries to be diagnosed with this syndrome! The current inclusion criteria provides for several subtypes of classification within this syndrome ranging from:

  • women that are underweight to obese, 
  • those that have a regularly occurring menstrual cycle to those that do not have one at all,
  • women with male patterned hair growth and loss, to those without facial hair and long, thick flowing locks,
  • those with sleep apnea, to those with insomnia issues and others with no effect to their sleep patterns
  • women that experience pelvic pain and those without
  • A potential for smaller breasts, accentuated jaw line and increased muscle development or more supple and soft features

Ten women may all share a diagnosis of PCOS and they will likely all present their body’s expression of the hormonal and metabolic imbalance in their own unique way. Some common traits that seem to affect all of the sub-types are an insulin sensitivity of varying degrees and fertility challenges; whether it be with conception, during pregnancy or with labour. 

Which of my parents can I thank for my PCOS?

There is a genetic component to PCOS but the exact conditions in which it is passed on are not completely understood. In families where at least one daughter has PCOS, it is possible to see insulin sensitivity in one or both of the father and male siblings. Evidence does also suggest that girls born to mothers who had gestational diabetes are more likely to present with PCOS and can then also, potentially pass that on to her female offspring. Since we lack a definitive cause, there remains the question as to what conditions must be present for a hormonal imbalance to develop. One thought is that the efforts made pre-conception to regulate hormone levels and maintain a healthy weight (BMI and adipose levels within recommended range) the predisposition of the offspring inheriting PCOS might be reduced. The upside to implementing efforts to regulate hormone levels, achieve a regular menstrual cycle rhythm, and achieve (as well as maintain) a healthy weight are the same as those to reduce the risk factors associated with life-threatening diseases associated with PCOS.  

Where are these feelings coming from?

There appears to be an increased tendency towards anxiety and depression in women with PCOS. Whether this connection is resulting from the hormonal imbalance directly or comes as a response to the physical and hormonal changes that result from it. The outward, visible manifestations that are possible with PCOS (facial hair growth, weight gain, acne, thinning head hair) may contribute to a woman’s body image and the relationship they have with themselves in that respect. Disordered eating and exercising can be common in women with PCOS. The unseen, internal manifestations may also contribute to a sense of discomfort with their body and in identifying themselves as different from their peers. Elevated androgen levels may contribute to a higher libido, potentially compounding an individual’s relationship with their body in terms of their sex life, early sexual experimentation and/or seeking connection and acceptance in relationship with others. 

Why is it taking so long to conceive?

Many women first discover that they have PCOS during a consultation with a reproductive endocrinologist at a fertility clinic after experiencing difficulty trying to conceive. The symptoms of PCOS are often masked by birth control pills or implants women are taking prior to them trying to conceive. They may have been prescribed hormonal birth control to manage early symptoms of PCOS that was not diagnosed at the time, such as irregular menstrual cycle lengths and/or acne. Since this can be a relatively common presentation with girls during the first few years of having their menstrual cycle, PCOS is not typically screened for at this early age and often goes undiagnosed until they are trying to conceive a child. It is quite common that women resume hormonal regulation of their menstrual cycle after the birth of their children. In many cases PCOS is seen as a diagnosis of their fertility challenges and may be overlooked in its significance as a risk factor for related life-threatening diseases, such as diabetes, cardiovascular disease, nonalcoholic fatty liver disease and cancer. Education on prevention of these associated diseases and potentially more frequent monitoring of blood level markers should be a part of ongoing care for these women.   

We can help. 

Since there are different presentations to this condition, it can become overwhelming and confusing navigating the various suggestions found in PCOS forums, cookbooks, journals, websites and social media. Talking with a practitioner with a focus in reproductive health is a great first step in identifying the factors that are most affected for you and devising a plan to best manage this syndrome. We can help by discussing the challenges you may be facing and which treatment options are available to help with the mechanism causing these challenges. We offer treatment in the form of acupuncture, dietary and lifestyle coaching, individualized herbal medicine formulation and supplement recommendations that are specific to you and your presentation of PCOS. The treatments can be incorporated into a collaborative approach with your reproductive endocrinologist, gynecologist, family doctor, psychologist, naturopath, personal trainer or any other health professional that you may already be working with.