PCOS: A Condition Every Person of Size Should Know About

Today, we start a new periodic series about PCOS (PolyCystic Ovarian Syndrome) in honor of PCOS Awareness Month.

This is an extremely important topic to understand when discussing pregnancy, birth, and breastfeeding in women of size ─ or even just general health in women of size ─ yet it's surprising how many "obese" people (and even medical professionals) are still under-informed about it. 

PCOS can be a bit of a controversial topic in Fat-Acceptance communities because weight-loss regimens are so closely associated with it.  PCOS support groups teem with women desperately trying to lose weight, and informational sites about PCOS almost always push weight loss.  It can be very difficult to get information about PCOS without being bombarded with a weight loss agenda, yet many women in the FA community are desperately in need of weight-neutral information and support for PCOS.

Another problem is that PCOS can be very difficult to diagnose.  As a result, many fat women with PCOS are erroneously told they don't have it, despite symptoms suggestive of it, while others are spuriously told they do have it, simply because they are fat.  Often, PCOS exists with significant co-morbidities (like hypothyroidism, adrenal issues, and other hormonal imbalances) that muddy the diagnostic waters even further. 

As a result, some in the fat-acceptance world dismiss the concept of PCOS entirely, or simply throw up their hands and give up trying to figure it all out.  And honestly, figuring out PCOS can be incredibly complex, even for those well-read in the subject. 

Yet many women of size are affected by PCOS, whether they know it or not.  And it doesn't just impact fertility and pregnancy; PCOS has life-long health implications.

It doesn't matter whether you intend to have children or not, or whether you are even of childbearing age; PCOS is still relevant to every fat person because of its other health implications. Truly, this a condition every person of size should know about.

For those who don't know that much about PCOS, this series will be a primer about it. First we'll start with a description of it and its most common symtpoms. Next, we'll segue to a quick discussion of how it typically presents, and then to its testing and diagnosis. Eventually, we'll consider possible causes and controversies; its impact on fertility, pregnancy, and birth; its impact on breastfeeding; treatment options; and implications for menopause and long-term health.

For the sake of readability, we'll break this series up into a number of different posts; some may be periodic instead of continuous due to time constraints. 

Hopefully, the series will serve as an introduction to basics about PCOS, a gateway to other information sources on the topic, and a weight-neutral "safe" space to discuss PCOS concerns in a weight-centric PCOS world. 

What is PCOS?

First, a definition.  From Wikipedia's entry on PCOS:

Polycystic Ovary Syndrome (PCOS) is one of the most common female endocrine disorders affecting approximately 5%-10% of women of reproductive age (12–45 years old) and is thought to be one of the leading causes of female infertility.

The principal features are obesity, anovulation (resulting in irregular menstruation) or amenorrhea, acne, and excessive amounts or effects of androgenic (masculinizing) hormones. The symptoms and severity of the syndrome vary greatly among women. While the causes are unknown, insulin resistance, diabetes, and obesity are all strongly correlated with PCOS

According to one study, "PCOS can be viewed as a heterogeneous androgen excess disorder with varying degrees of gonadotropic and metabolic abnormalities."  Translated: PCOS is a disorder that presents differently in different people (heterogeneous), usually presents with abnormally high levels of "male" hormones (androgens), resulting in problems that impact the reproductive system and metabolism (gonadotropic and metabolic abnormalities).

PCOS was first identified in 1935 by doctors Stein and Leventhal, so for a while it was referred to as "Stein-Leventhal Syndrome." It later became known as "Polycystic Ovarian Syndrome" because many women with this syndrome had multiple cysts on the ovaries.  This occurs in PCOS when egg follicles form and start to mature, but hormonal imbalances keep the follicles from fully developing and releasing.  These incompletely developed follicles (cysts) on the ovaries have a characteristic "string of pearls" appearance, and the prevalence of these cysts gave the syndrome its name.

However, the name "PCOS" makes it sound like the problem begins in the ovaries, when instead it results from a complex endocrine disorder, affecting many systems of the body.  The accumulation of multiple cysts on the ovaries is merely one of the many possible side effects of the condition, yet the name has stubbornly stuck because it is catchy and easy to remember.

So although the moniker of Polycystic Ovarian Syndrome is a less-than-ideal description of the condition, it remains the name most commonly used for it and that will probably never change.

Symptoms of PCOS

Symptom lists for PCOS vary quite a bit from source to source.  Some only list a few symptoms, while others list everything but the kitchen sink. 

The following seem to be the most common symptoms associated with PCOS, but be aware that the validity of some are debated:

• Menstrual Cycle Difficulties
• irregular/long, or completely absent menstrual cycles (oligomenorrhea or amenorrhea)
• periods that can be abnormal when they do occur (excessively heavy or just spotting)
• High androgen ("male hormone") levels, like testosterone
• excessive facial and/or body hair (hirsutism)
• cystic acne and/or a tendency to boil-like sores (sebaceous cysts) under the skin
• male-pattern balding on the head (alopecia androgenetica)
• Cystic ovaries in some women (but not all)
• difficulty ovulating, which causes the irregular or long menstrual cycles
• total absence of ovulation in some, intermittent ovulation or "weak" ovulation in others
• Problems with Insulin Resistance
• strong insulin resistance (difficulty utilizing the insulin present)
• high insulin levels to compensate for the insulin resistance (hyperinsulinemia)
• obesity and/or history of unexplained significant weight gain
• great difficulty losing weight and keeping it off
• dark velvety patches of skin on the armpits, neck, or groin (acanthosis nigricans )
• body tags/little flaps of excess skin on the body (acrochordons)
• Hormonal Disturbances and Fertility Issues
• low progesterone levels and estrogen dominance
• difficulty achieving pregnancy because of hormone imbalances
• higher rate of miscarriage early in pregnancy
• Metabolic abnormalities
• higher rates of glucose intolerance and diabetes, often at early ages
• high "bad" cholesterol (LDL), and low "good" cholesterol (HDL)
• high triglycerides
• Long-Term Health Issues
• a tendency towards high blood pressure at some point
• higher rates of heart disease later in life
• higher rates of endometrial cancer later in life, possibly other cancers too
• possibly a tendency towards depression and/or anxiety

This is not an exclusive list of symptoms; there may be others as well, including a tendency towards Irritable Bowel Syndrome (IBS) and/or gluten intolerance, Chronic Fatigue Syndrome, Sleep Apnea, Fibromyalgia, or auto-immune diseases like Hashimoto's Thyroiditis.  However, because PCOS is often accompanied by co-morbidities (other conditions), it is not always easy to distinguish what is a symptom of PCOS itself versus a symptom of a co-morbidity, and the validity of these other conditions as tied to PCOS has been questioned.

PCOS is a Syndrome

It's very important to remember that PCOS is a syndrome, which means that not every symptom must be present in order to diagnose the condition.

The two symptoms considered most important to this condition include evidence of menstrual difficulties (past or present), and symptoms of androgen excess (like hirsutism, thinning hair, or cystic acne).

These are often accompanied by signs of insulin resistance (like acanthosis nigricans, body tags, or metabolic abnormalities like high blood sugar or high cholesterol). 

Cystic ovaries used to be considered central to the diagnosis of PCOS, but are now considered less definitive, as some women with cystic ovaries do not have other symptoms of PCOS, and some women with strong symptoms of androgen excess do not present with cystic ovaries.  Therefore, the importance of cystic ovaries is debated, but is still used at times.

Remember also that PCOS symptoms cross a wide spectrum of type and severity.  This is why its diagnosis is so difficult at times.

Menstrual issues are very common in PCOS but vary in scope.  Some women skip only an occasional period, while others skip constantly (or have few or no periods). Some instead have long cycles (more than 35 days); some have excessively heavy periods, or may have spotting in the middle of a cycle.

Some women have great difficulty getting pregnant, some have difficulty staying pregnant, while still others do not have trouble with either fertility or miscarriage.  Some providers consider anovulation and fertility issues absolutely central to the diagnosis of PCOS (and will not diagnose it without these), while other providers have a more flexible definition.

The majority of women with PCOS have issues with hirsutism (extra facial or body hair), but not all do.  Some have lots of skin issues (including cystic acne, sebaceous cysts/boils, and/or hair loss), some don't.  Many women with PCOS tend to be heavy, but not all are.

So as you can see, PCOS is not a clear-cut, black-and-white condition, and its presentation varies a lot. 

Generally speaking, the more symptoms you have, the more severe the PCOS ─ but not always. And women without a lot of symptoms may still have PCOS.

Many symptomatic women are never diagnosed because they don't have enough symptoms or the right symptoms to meet official diagnostic criteria.  Many have difficulty getting diagnosed because of the relative lack of understanding about PCOS in the medical community, or the tendency to blame every problem of fat women on obesity alone.  As a result, PCOS is often underdiagnosed.

On the other hand, sometimes care providers use PCOS as a catch-all diagnosis for every problem a fat woman experiences, without bothering to investigate other possible causes. So PCOS has the unenviable distinction of being both underdiagnosed and overdiagnosed. 

In women with a lot of symptoms, the diagnosis is pretty clear, but in women without severe, classic symptoms, the diagnosis can be much harder to make.  This is part of what makes this condition so difficult.

Below you can find a few links to further resources about PCOS; feel free to share more in the comments section. Next time, we'll discuss how PCOS often presents in women and what it means to them. Then we'll talk about its testing, diagnosis and controversies. Later, we'll cover how it affects pregnancy, breastfeeding, menopause, and long-term health.

(Note: Some women with PCOS are very well-read about the condition. Feel free to add in clarifications, further resources, links, and other thoughts about PCOS in the comments section. I encourage everyone to do their own research about PCOS, but remember that information about PCOS can vary greatly from source to source, and not all experts agree on its cause, presentation, or best treatment.)

Links to Further Information About PCOS*

General Information About PCOS

• http://www.pcosupport.org/
• http://www.soulcysters.com/
• http://www.womenshealth.gov/publications/our-publications/fact-sheet/polycystic-ovary-syndrome.cfm
• http://women.webmd.com/tc/polycystic-ovary-syndrome-pcos-topic-overview
• http://labtestsonline.org/understanding/conditions/pcos/?start=0
• http://labtestsonline.org/understanding/conditions/pcos/?start=1
• http://emedicine.medscape.com/article/924698-overview
• http://www.isletsofhope.com/diabetes/disorders/polycystic_ovarian_syndrome_pcos_1.html
• http://www.coloradoinfertilitydoctors.com/pcos.shtml
• http://emedicine.medscape.com/article/256806-overview
• http://www.infertilityspecialist.com/pcos-minnassian.html

*Remember, these resources are generally not weight-neutral.