PCOS Overview
PCOSgurl's Guide to PCOS
PCOS is a hormonal, reproductive and metabolic syndrome affecting up to 21% or one in five patients worldwide.
It is estimated approximately 70% of patients with PCOS remain undiagnosed or misdiagnosed.
Polycystic Ovary Syndrome (PCOS)
is caused by an imbalance of reproductive hormones and is considered the most common hormonal (endocrine) condition in women. PCOS is also a metabolic disorder which can include; insulin resistance, inflammation and androgen excess, all thought to be potential contributing factors in the development, symptoms and severity of polycystic ovary syndrome.
Two other key features of PCOS are production of excess androgens (male sex hormones) and anovulation (the failure to ovulate properly), which makes PCOS the leading cause of anovulatory (no ovulation) infertility.
PCOS is called a syndrome, as opposed to an illness or disease because it manifests itself through a group of signs and symptoms that can occur in any combination, rather than having one known cause or presentation. A patient may or may not have all of them but instead could display two or three that can vary in presence and severity. This is why all too often PCOS may be misdiagnosed or go undiagnosed for years.
How is PCOS Diagnosed?
According to the most commonly used diagnostic criteria (Rotterdam Criteria)
a patient must have two out of the following three to be diagnosed with PCOS:
Irregular or absent menstrual cycles:
With PCOS many have irregular menstrual cycles, called oligomenorrhea, and some a total lack of periods, referred to as as amenorrhea
Oligomenorrhea
About 50% of women with PCOS have prolonged intervals between their menstrual periods
Amenorrhea
About 20% of women with #PCOS have no menstrual periods at all
polycystic ovaries:
(as seen on an ultrasound)
PCOS is often characterized by enlarged ovaries, with multiple small painless cysts or follicles that form to look like a pearl necklace on the ovary. This is seen in approximately 20% of patients on ultrasound but, it is not necessary to have cystic ovaries to have PCOS.
Hyperandrogenism :
(Andogen excess or elevation of male sex hormones)
With hyperandrogenism, androgens referred as male sex hormones (found in both men and women) are elevated beyond normal levels.
There are two types of androgen excess clinical and biochemical..
Clinical:
This type of Androgen Excess shows visible signs or symptoms such as acne, hair loss of excess facial and body hair that correlate with higher than normal androgen levels.
Biochemical:
This type of androgen excess is based on lab work that may indicate abnormally high androgen levels in bloodwork.
The androgen hormones include:
Testosterone
Androstenedione (A4)
Dehydroepiandrosterone (DHEA)
DHEA sulfate (DHEA-S)
Androstenediol (A5)
Androsterone
Dihydrotestosterone (DHT)
How does Insulin play a role in PCOS ?
PCOS or Polycystic Ovary Syndrome received its name because many women with PCOS have changes in their ovaries including small cysts or follicles, that surround the ovary looking as if it is a pearl necklace on ultrasound.
However, PCOS is not a gynecological problem, it's rather an endocrine syndrome that changes how your body reacts to some hormones, like insulin, which is thought to be an underlying cause or contributing factor in PCOS development.
The body uses insulin to turn food, especially sugar, into energy with #PCOS insulin sensitivity and insulin resistance can make it harder to process insulin.
High levels of insulin cause more androgens (male hormones) to be made in the body.
With higher levels of androgens, a patient can show some signs like acne, a thinning hair line or extra hair on the face or body.
Other issues that can wreak havoc on patients with PCOS are weight gain, especially around the mid-section (apple shape) and infertility as hormone changes can keep a woman from having an ovum (egg) released from her ovary every month which can cause her to skip periods (amenorreah) or have problems getting pregnant. As insulin increases with this syndrome it can also lend itself to (acathosis nigracans) or darkened skin in the neck, armpits and skin tags and eventually insulin resistance.
What symptoms are associated with PCOS?
While symptoms vary in severity and occurance from patient to patient, the following are some of the more common symptoms associated with the syndrome.
Patients with PCOS may have some of the following symptoms:
(Please note the symptoms of PCOS are not limited to the following)
• Amenorrhea (no menstrual period), infrequent menses, and/or oligomenorrhea (irregular bleeding) — Cycles are often greater than six weeks in length, with eight or fewer periods in a year. Irregular bleeding may include lengthy bleeding episodes, scant or heavy periods, or frequent spotting.
• Oligo or anovulation (infrequent or absent ovulation) — While women with PCOS produce follicles — which are fluid-filled sacs on the ovary that contain an egg — the follicles often do not mature and release as needed for ovulation. It is these immature follicles that create the cysts.
• Hyperandrogenism — Increased serum levels of male hormones know as androgens. Specifically with PCOS, testosterone, androstenedione, and dehydroepiandrosterone sulfate (DHEAS) tend to be elevated.
• Infertility — Infertility is the inability to get pregnant within six to twelve months of unprotected intercourse, depending on age. With PCOS, infertility is usually due to ovulatory dysfunction.
• Cystic ovaries — Classic PCOS ovaries have a "string of pearls" or "pearl necklace" appearance with many cysts (fluid-filled sacs). It is difficult to diagnose PCOS without the presence of some cysts or ovarian enlargement, but sometimes more subtle alterations may not have been recorded, or are not recognized as abnormal, by the ultrasonographer.
• Enlarged ovaries — Polycystic ovaries are usually 1.5 to 3 times larger than normal.
• Chronic pelvic pain — The exact cause of this pain isn't known, but it may be due to enlarged ovaries leading to pelvic crowding. It is considered chronic when it has been noted for greater than six months.
• Obesity or weight gain — Commonly a woman with PCOS will have what is called an apple figure where excess weight is concentrated heavily in the abdomen with comparatively narrower arms and legs. The hip:waist ratio is smaller than on a pear-shaped woman — meaning there is less difference between hip and waist measurements. It should be noted that most, but not all, women with PCOS are overweight.
• Insulin resistance, hyperinsulinemia, and diabetes — Insulin resistance is a condition where the body's use of insulin is inefficient. It is usually accompanied by compensatory hyperinsulinemia — an over-production of insulin. Both conditions often occur with normal glucose levels, and may be a precursor to diabetes, in which glucose intolerance is further decreased and blood glucose levels may also be elevated.
• Hypertension (high blood pressure) - Blood pressure readings over 140/90. Hypertension is present in 22% of patients with PCOS. It is extremely prevalent in older women with PCOS and those who are obese. PCOS associated insulin resistance is highly related to this abnormality.
• Hirsutism (excess hair) — Excess hair growth such as on the face, chest, abdomen, thumbs, or toes.
• Alopecia (thinning hair line) — The balding is more common on the top of the head than at the temples.
• Acne/Oily Skin/Seborrhea — Oil production is stimulated by overproduction of androgens. Seborrhea is dandruff — flaking skin on the scalp caused by excess oil.
• Acanthosis nigricans (dark patches of skin, tan to dark brown/black) — Most commonly on the back of the neck, but also but also in skin creases under arms, breasts, and between thighs, occasionally on the hands, elbows and knees. The darkened skin is usually velvety or rough to the touch.
• Acrochordons (skin tags) — Tiny flaps (tags) of skin that usually cause no symptoms unless irritated by rubbing.
• Abnormal Lipids (Cholesterol) - Many PCOS patients have elevated cholesterol, triglycerides, and LDL cholesterol and have lowered high density lipoprotein and Apo A1 levels.
• Mood Disorders - can be triggered by hormone imbalance, symptom associated emotional strains and/or poor body image. Among PCOS associated mood disorders including eating disorders, body dysmorphia and increase prevalence of suicide attempts, approximately 45% of patients with PCOS present with anxiety and 34% with depression.
• Obstructive Sleep Apnea - Patients with PCOS are at a higher risk of developing obstructive sleep apnea due to androgens affecting sleep receptors in the brain.
How is PCOS Diagnosed?
PCOS can be diagnosed by any type of health care practioner including nutriotionist, psychologists, primary care physicians, dermatologists, naturopaths, health coaches or anyone whom has an expertise in the diagnosis and treatment of PCOS or PCOS related symptoms.
However, the two types of doctors whom most often diagnose and treat the syndrome are endocrinologists and gynecologists.
PCOS is often diagnosed by taking a medical and family history, doing a physical exam, getting blood tests, and possibly getting an ultrasound. Of these 4 things, the most important is a history of irregular periods. If you tell a doctor your periods have been irregular for a prolonged period of time, chances are very high you have PCOS.
PCOS affects various women in various ways however it should never be left unchecked! Even if you don't want children, it is essential to treat PCOS. The high insulin and androgens can lead to a host of complications and risks for other more serious conditions.
So Why is getting diagnosed so difficult?
Due to the fact the symptoms and severity of symptoms can vary from patient to patient means some doctors are not seeing the big picture. They will look at symptoms individually rather than collectively and direct treatment to these specific issues only.
On average, patients with PCOS see two to three doctors and it takes two to three years to be properly diagnosed.
We need to overcome diagnostic barriers to ensure ALL patients are being screened properly for PCOS...
What needs to change?
1. Some doctors may think that girls will "grow out" of irregular periods, not recognizing that it is not normal to have irregular periods throughout adolescence.
Many doctors will not diagnose a teen with PCOS until they have shown a set pattern of irregular periods for at least three years from the onset of menarche.
2. Some doctors, KNOW that a woman or girl has PCOS, but fail to mention or discuss it with their patients unless infertility is being addressed. This leaves an entire subset of patients not trying to conceive out of the diagnostic and treatment realms.
3. Most definitions of PCOS refer to the condition as affecting women of reproductive age, leaving out preteens, transgender, teens, perimenopausal and menopausal patients out of the diagnostic definition.
4. Increasing awareness, support and resources with regards to PCOS by sharing stories, joining organizations and support groups, attending events, volunteering and donating
To learn more please check our sections on
lab tests and preparing for your doctors visit
What is being done to learn more about treatment and diagnosis for PCOS
Although the etiology of the syndrome is unclear, there are currently markers being researched. A forum in 2013 outlined the possible causes and effects of #PCOS and is calling for government recognition and research into these areas.
Potential areas of further research activity include the analysis of predisposing conditions that increase the risk of PCOS, particularly genetic background and environmental factors, such as endocrine disruptors and lifestyle
Help take a stand by asking legislators and government organization to prioritize and fund PCOS by signing
The National PCOS Petition
References:
WomensHealth.gov
https://www.womenshealth.gov/a-z-topics/polycystic-ovary-syndrome
Very Well Health
http://www.VeryWellHealth.com
PCOSgurls Guide to Life with PCOS
https://www.facebook.com/PCOSgurl/
Updated: 6/20/21
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