If you google PCOS, you likely won’t find much helpful information, and chances are your doctor didn’t give you much either. How do you know if you have PCOS, what does that even mean?
Did you know there were 4 different types of PCOS?
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I spent the last couple of weeks researching and upgrading my knowledge of PCOS, going through blogs, podcasts, books and research papers to help better explain what is happening in your body when a doctor says you have PCOS and how can we determine what type.
What is PCOS?
PCOS stands for polycystic ovary syndrome – poly meaning multiple, cystic meaning tiny “cysts” in the ovary aka underdeveloped follicles and syndrome meaning “a group of symptoms which consistently occur together, or a condition characterized by a set of associated symptoms.”
So basically, PCOS is a condition of androgen excess when other reasons for high androgens are ruled out. PCOS involves many different symptoms, and 10-20% of women or menstruators have PCOS.
What causes PCOS?
The exact cause is unknown… although it is a genetic/epigenetic condition. So you have a predisposition, which is triggered by lifestyle or environment. These conditions increase the susceptibility to having those PCOS symptoms arise. We know PCOS can run in families, so if you’re mom or sister has it, you are more likely to have it as well.
We also see that in women with PCOS, their ovaries tend to pump out more androgens in response to insulin than women without this predisposition. And the majority of those with PCOS have some level of insulin resistance (70% of cases).
But don’t use this as a safety net, you can help to turn these genes off with an improved diet and lifestyle.
Symptoms of PCOS
Symptoms can present differently for each individual, here are some examples:
- weight-management challenges
- acne/cystic acne (commonly on jawline, cheeks or back)
- excess facial/body hair (hirsutism)
- receding hairline or losing hair
- skin tags
- dark patches on back of neck / underarms (Acanthosis nigricans)
- long irregular cycles (36+ days long from period to period)
- missed periods
- anovulation (lack of ovulation or delayed ovulation)(fewer than 10 cycles per year or cycles 35+ days long)
- heavy bleeding
- spotting between cycles (which may resemble too soon periods although this is anovulatory)
- fertility challenges or hard time getting pregnant
- mood fluctations
- headaches
- fatigue
- enlarged ovaries (ovarian volume larger than 10cm in a single ovary)
- ovarian “cysts” (small underdeveloped follicles – 12 or more follicles measuring from 2-9mm or 26 follicles in both on newer ultrasound machines only for women aged 18-35)
Diagnostic Criteria
There are two sets of criteria that you could use to diagnose PCOS. Many doctors use the Rotterdam criteria, although many people find this one can cause misdiagnoses and thus I like the “AE criteria” better.
Rotterdam Criteria Must have 2 of the following:
- Elevated androgen levels (”male hormone”)
- Irregular cycles/ovulation or absence of ovulation
- Polycystic ovaries on ultrasound – these cysts are actually follicles that haven’t fully matured (the name is misinterpreting and implies the growth of cysts) (not everyone with PCOS has cysts on ovaries)
AE-PCOS Criteria: Must have all of the following:
- Ovarian dysfunction and/or polycystic ovaries
- Clinical or biochemical androgen excess (either seen physically or on bloodwork)
- Exclusion of other conditions causing high androgens
Other labs (mostly bloodwork) that should be involved in obtaining a proper diagnosis: (perhaps make a list to bring to doctor)
- glucose tolerance test with insulin
- fasting insulin
- HOMA-IR
- free testosterone / testosterone
- SHBG
- DHEA / DHEAS
- LH
- FSH
- Prolactin
- AMH
- 17-OH progesterone (to test for non-classic adrenal hyperplasia)
- pelvic ultrasound
Why these tests can be helpful in diagnosing PCOS (the details)
Glucose Tolerance Test with Insulin
- Why it’s useful: This test measures how your body processes glucose and insulin over time. Women with PCOS often have insulin resistance, which means their bodies don’t use insulin effectively. This can lead to higher blood sugar levels and an increased risk of developing type 2 diabetes.
- Diagnosing PCOS: It helps identify insulin resistance, a common feature of PCOS, which can exacerbate other symptoms like weight gain and irregular periods.
Fasting Insulin
- Why it’s useful: This test measures the level of insulin in your blood after fasting. High fasting insulin levels indicate insulin resistance.
- Diagnosing PCOS: Elevated fasting insulin can confirm insulin resistance, supporting the diagnosis of PCOS and guiding treatment options to improve insulin sensitivity.
HOMA-IR (Homeostatic Model Assessment of Insulin Resistance)
- Why it’s useful: This is a calculation based on fasting glucose and insulin levels to estimate insulin resistance.
- Diagnosing PCOS: It provides a numerical value indicating the degree of insulin resistance, which is useful for diagnosing PCOS and monitoring treatment effectiveness.
Free Testosterone
- Why it’s useful: Free testosterone measures the amount of testosterone that is not bound to proteins in the blood and is available to tissues. It provides a more accurate indication of the active testosterone levels in the body.
- Diagnosing PCOS: Elevated free testosterone levels are common in women with PCOS and are associated with symptoms like hirsutism (excessive hair growth), acne, and male-pattern baldness. Measuring free testosterone helps to identify hyperandrogenism, a key feature of PCOS.
Total Testosterone
- Why it’s useful: Total testosterone measures the overall amount of testosterone in the blood, including both the bound and free forms. It provides a broad overview of testosterone levels.
- Diagnosing PCOS: While total testosterone is helpful, it can sometimes be normal in women with PCOS who still have elevated free testosterone. Elevated total testosterone can indicate hyperandrogenism, supporting the diagnosis of PCOS, but it’s often used alongside free testosterone for a more complete picture.
SHBG (Sex Hormone-Binding Globulin)
- Why it’s useful: SHBG binds to sex hormones, including testosterone. Low levels of SHBG can result in higher levels of free testosterone.
- Diagnosing PCOS: Low SHBG levels can indicate increased free testosterone, which is often seen in PCOS.
DHEA (Dehydroepiandrosterone)
- Why it’s useful: DHEA is an androgen produced by the adrenal glands. Elevated levels of DHEA can indicate excess androgen production from the adrenal glands, which may contribute to symptoms seen in PCOS.
- Diagnosing PCOS: Measuring DHEA helps determine if the androgen excess is due to adrenal gland activity rather than ovarian activity. High DHEA levels can suggest adrenal hyperandrogenism, which is a characteristic seen in some women with PCOS.
DHEAS (Dehydroepiandrosterone Sulfate)
- Why it’s useful: DHEAS is the sulfated form of DHEA and is also produced by the adrenal glands. It is more stable in the bloodstream compared to DHEA, making it a reliable marker for assessing adrenal androgen production.
- Diagnosing PCOS: Elevated DHEAS levels can indicate increased adrenal androgen production, which helps differentiate between adrenal and ovarian sources of androgen excess in women with PCOS. High DHEAS levels are often seen in women with PCOS and can contribute to symptoms like acne, hirsutism, and irregular menstrual cycles.
LH (Luteinizing Hormone)
- Why it’s useful: LH is involved in regulating the menstrual cycle and ovulation. Women with PCOS often have elevated LH levels.
- Diagnosing PCOS: A high LH to FSH ratio is a common finding in PCOS and can help confirm the diagnosis.
FSH (Follicle-Stimulating Hormone)
- Why it’s useful: FSH is another hormone involved in regulating the menstrual cycle and ovarian function. In PCOS, FSH levels are often lower relative to LH.
- Diagnosing PCOS: An imbalanced LH to FSH ratio supports the diagnosis of PCOS.
Prolactin
- Why it’s useful: Prolactin is a hormone produced by the pituitary gland. Elevated prolactin levels can cause menstrual irregularities and mimic PCOS symptoms.
- Diagnosing PCOS: Measuring prolactin helps rule out hyperprolactinemia as a cause of symptoms similar to PCOS.
AMH (Anti-Müllerian Hormone)
- Why it’s useful: AMH is produced by ovarian follicles and can indicate the number of remaining eggs.
- Diagnosing PCOS: High AMH levels are often seen in PCOS due to the increased number of small ovarian follicles.
17-OH Progesterone
- Why it’s useful: This test helps screen for non-classic congenital adrenal hyperplasia (NCAH), a condition that can cause similar symptoms to PCOS.
- Diagnosing PCOS: Elevated levels suggest NCAH, which needs to be distinguished from PCOS for appropriate treatment.
Pelvic Ultrasound
- Why it’s useful: Ultrasound imaging of the ovaries and uterus can reveal the presence of multiple ovarian follicles (often called “cysts”).
- Diagnosing PCOS: Finding multiple small follicles is a key diagnostic criterion for PCOS, helping to visualize the ovarian aspect of the syndrome.
Although doing every single one of these labs could be unnecessary, each can help provide valuable information that helps build a comprehensive picture of whether someone has PCOS and guides appropriate management and treatment.
Misdiagnosis
Those who ONLY have polycystic ovaries on ultrasound and no further testing may have a misdiagnosis. This can occur and be a problem for many teens, because having poly-cystic ovaries on ultrasound can be common, as this age group can have more eggs developing in the ovary – up to 25 can be normal, as opposed to around 12 in adults.
Also teens usually have a bit more testosterone and acne at this age as well which can be normal during puberty and their cycles can be a bit longer and more irregular during the first couple years. If there are clear signs of androgen excess
Another common misdiagnosis as PCOS but its not is:
- post-pill PCOS, not true PCOS, which we’ll talk about later
- thyroid conditions ( although 30-40% of PCOS cases have a thyroid problem / also many thyroid cases have gluten sensitivity or celiac)
- hypothalamic amenorrhea
- high prolactin
- non-classic adrenal hyperplasia
This is why doing thorough testing is important and can help a more targeted treatment.
Common Medical Managements
When many are diagnosed with PCOS they are told it is untreatable, may be offered the birth control pill or metformin, and unfortunately many are also told they are infertile, without much other discussion.
Metformin can help the crazy insulin levels seen in PCOS cases and can help reduce excess androgen levels, but also can come with side effects like gastrointestinal upset and can deplete levels of b12 and folate.
The birth control pill can provide a regular but fake cycle and aid androgen symptoms but tends to worsen insulin dysregulation and inflammation without targeting the root cause. This exasperates the problem long-term.
Fortunately there is a lot we can do to level out PCOS symptoms and restore regular healthy cycles and fertility.!
PCOS has its roots in 4 areas.
These four are:
- Insulin-resistance PCOS (70% of cases)
- Post-pill PCOS
- Inflammatory PCOS
- Adrenal PCOS (10% of cases)
These types work as a hierarchy, so first we test for the insulin-resistance type. If no insulin resistance is noted then we move on to see if it is post-pill, if you weren’t on the pill or you previously had irregular cycles then we move on to inflammatory PCOS. If no excess inflammation is noted then we move on to adrenal.
NOTE that you can have multiple, many times PCOS cases that have a little of everything, but the classification will fall under whichever one is “higher” like insulin-resistant PCOS.
Type 1: Insulin-resistant PCOS
70% of PCOS cases are the insulin-resistance type and this is why metformin can actually help PCOS as opposed to the other method doctors typically prescribe – the birth control pill – which can make matters worse long term because it can negatively impact insulin regulation. Metformin has its own issues particularly with gastrointestinal side effects and risk of b12 deficiency long term.
Recap on what insulin resistance is!
- Basically you eat food
- that food turns to sugar which causes an increase in blood sugar
- this causes your pancreas to secrete insulin.
- This insulin’s job is to get the sugar out of your bloodstream and into your cells so they can use it as energy.
- Insulin does this by binding to receptors on the cells which “open the doors” for sugar.
- When you are insulin resistant these bind but the doors don’t open as normal.
- This prompts your pancreas to say hey there’s still sugar in the bloodstream let’s release some more insulin. Which causes an abnormally high amount of insulin in your bloodstream.
- An overworked pancreas eventually may just quit (aka type 2 diabetes). This is why having PCOS can be a risk factor for diabetes, as most have insulin resistance.
Insulin resistance is a common root problem of PCOS because this can throw off hormones by leading to an increase in androgens like testosterone which can cause the various symptoms known to PCOS like acne, hair growth, weight gain and prevent regular healthy cycles.
Excess Insulin disrupts hormones:
- Causes the ovaries to make more androgens: High insulin levels stimulate the ovaries to produce more androgens (like testosterone). This occurs because insulin can enhance the activity of enzymes involved in androgen production in ovarian theca cells.
- Lowers SHBG causing more active androgens to circulate in the blood: Insulin resistance lowers the production of SHBG in the liver. SHBG binds to androgens and estrogen, making them inactive. When SHBG levels drop, more free and active androgens circulate in the blood, exacerbating PCOS symptoms.
- Interrupts normal follicle development: High insulin levels interfere with normal follicle development in the ovaries. This can lead to the formation of multiple small, immature follicles that fail to ovulate (anovulation) aka “the cysts”, a hallmark of PCOS. not everyone with pcos will have cysts – string of pearls
- Affects the release of hormones from the brain: Insulin resistance can also affect the brain ( hypothalamus and pituitary gland), increasing the secretion of LH. Elevated LH levels further stimulate androgen production in the ovaries, creating a feedback loop that worsens PCOS symptoms. [Insulin resistance and hyperinsulinemia (high insulin levels) can alter the secretion patterns of GnRH from the hypothalamus.This alteration often results in an increased LH to FSH ratio. Higher levels of LH relative to FSH contribute to excessive androgen production in the ovaries.Elevated LH levels further stimulate the ovarian theca cells to produce more androgens. This creates a vicious cycle of hormonal imbalance, as increased androgens further disrupt follicle development and ovulation.
- Long-term low-grade inflammation: Insulin resistance is often associated with low-grade chronic inflammation. This inflammation can affect the ovaries and contribute to the hormonal imbalances seen in PCOS, further impairing follicle development and ovulation.
- Lead to increased fat tissue: Insulin resistance is commonly linked with weight gain and obesity, particularly abdominal obesity. Excess adipose tissue can produce hormones and cytokines that worsen insulin resistance and androgen production.
Higher androgens can cause all these annoying symptoms and irregular cycles – remember PCOS is an excess androgen problem!
Type 2: Post-pill PCOS
If you do not have insulin-resistant PCOS, you were on the pill and previously had regular cycles prior to taking the pill, you may have Post-pill PCOS. (if you had previously irregular cycles before going on the pill, skip to 3rd type)
This is a temporary state of ‘PCOS’ and not true PCOS. You may have polycystic ovaries seen on ultrasound but this is pretty common due to the pill. You may also see oily skin, acne breakouts or increased body or facial hair.
This can occur due to the androgen surge, as a sort of “withdrawal effect” from the hormones in birth control. It is more common if you were on a pill with a higher androgen suppression (like the ones that say they’re good for acne) and tend to appear within 3 months after going off the pill.
It may take some time for the body to recalibrate its hormone levels (6 months to 2 years-ish) and should level out over time especially when combined with diet and lifestyle changes. Supplements can help to lessen symptoms in the meantime.
If you do some prep before coming off the pill, you may have an easier time with regaining regular cycles.
Type 3: Inflammatory PCOS
This type is associated with low-grade chronic inflammation, which can lead to an overproduction of androgens by the ovaries. It’s often triggered by environmental triggers, poor lifestyle habits, food sensitivities, underlying infections and autoimmune diesases can all contribute to this inflammation.
Inflammatory cytokines can up-regulate enzymes involved in androgen production in the ovaries and adrenal glands. This leads to higher levels of androgens (like testosterone), which can disrupt the menstrual cycle and prevent ovulation.These cytokines can also influence the hypothalamic-pituitary-adrenal (HPA) axis, which regulates hormone production which can further lead to an increase in adrenal androgens.
The inflammatory environment can reduce the levels of sex hormone-binding globulin (SHBG), leading to higher amounts of active (free) testosterone in the blood.
Inflammation often leads to oxidative stress, a condition characterized by an imbalance between free radicals and antioxidants in the body. Oxidative stress can further damage cells, including those in the ovaries, leading to increased production of androgens and poor egg quality.
Type 4: Adrenal PCOS
The last type is adrenal PCOS. In this type, the adrenal glands produce excess androgens in response to stress or other factors. It tends to have a genetic component or even a trauma component as like other PCOS types.
The hypothalamic-pituitary-adrenal (HPA) axis, which regulates stress response, can become dysregulated, leading to overproduction of adrenal androgens. In this type, DHEAS is particularly high and other androgens like testosterone are high or normal.
As with all types, we must check for other causes of high androgens like non-classic adrenal hyperplasia and high prolactin. About 1 in 100 women have adrenal hyperplasia, so check for it.
Lean PCOS (a form of insulin-resistant PCOS)
Not everyone with PCOS is overweight, With “lean PCOS” although someone may look lean, they still tend to have early stages of insulin resistance and commonly higher inflammation throughout their body. They also tend to be more active and may excel in athletics due to having naturally higher androgens, which can offset weight gain. Having adrenal PCOS is more common in these individuals.
It’s seen in these “lean PCOS” cases that their capillaries do not properly respond to insulin and expand as they should. This is the earliest sign of insulin resistance. Because of this, there is poor delivery of glucose and nutrients to the muscles. This is where insulin resistance tends to start.
They also tend to have insulin hypersensitivity, when they eat their tissues pull sugar in faster and can be prone to hypoglycemia, and get hangry and more hungry all day. Many lean women with PCOS eat less than other lean women and many tend to be very active, more likely to have higher output of adrenal androgens, (they make a lot of DHEA) which is a bit more protective for the metabolism. They have more pituitary hormone problems then the classic insulin-resistant PCOS, and tend to make more LH.
Natural treatments for PCOS
The natural treatments and supplements we use will depend on the type you fall under (although you can have multiple types that cross over but remember that the primary one will be the first category you fall under). A lot of the lifestyle and nutrition basics underlie them all and that’s why this is where we start.
Lifestyle:
- blood sugar regulation (eating meals that combine quality 20-30g protein, non-starchy vegetables (fiber), healthy fats, some starchy vegetables or complex carbs (firer).
- test how many carbs you can handle by just seeing how you feel after a meal and throughout the day. Different cases can handle different amount)
- remember were not trying to go on a super low-calorie or carb diet were just eating whole, balanced and enough nutrient dense food to give our bodies what they NEED WITHOUT going into starvation mode. We want to avoid stressing our body out more.
- look into food insulin demand index
- cut the sweets (yes even the date balls, especially the date balls)
- dairy tends to spike insulin a lot (just something to keep in mind)
- cut out aspartame and sucralose (stevia is usually fine)
- don’t wait too long to eat in between meals – don’t get hangry – perhaps keep a healthy snack with you.
- may want to include intermittent fasting or eating windows (this will depend on type for some people it just stresses body out more but for some it does wonders for their insulin)
- weight training and lifting heavy things (2-4 days per week) – amazing for insulin sensitivity
- careful with the amount of cardio – it may be stressing out the body too much
- incorporate mindful activities to help stress – yoga, walks, music, art, games, puppies etc
- cut out any food sensitivities if you have any – this can worsen inflammation – (if you suspect any, cut our for 30 days and see how you feel)
- try and replace house/care products with cleaner alternatives
- give up alcohol / recreational drugs
- drink enough water – 2-3L depending on activity level and your body’s personal needs (remember that you can drink too much plain water and it can mess up your electrolytes thus add in mineral drops or Celtic sea salt)
Supplements:
- Inositol: Myo-inositol/d-chiro-inositol in a 40:1 ratio (exact ratio found in the body) can help with insulin sensitivity. PCOS ovaries tend to be deficient in myo-inositol. Both together can help with insulin sensitivity, androgen symptoms and regular ovulation/egg quality. Well-tolerated and has done side-by-side studies with metformin showing equally beneficial without the common side effects
- Vitamin D: acts more like a hormone, and helps to improve insulin sensitivity, inflammation and immunity. Many are deficient especially in women with PCOS
- Berberine: It has been shown to improve insulin sensitivity, reduce blood glucose levels, reduce androgens and promote weight loss. It may achieve this by altering the gut microbiome, but not to be used long-term due to the gut-altering effects as it may kill off too many good bacteria.
- magnesium bis-glycinate: aids with sleep, relaxation and insulin sensitivity. Also reduces inflammationn.
- Zinc: helps regulate menstrual cycles, reduce androgen levels, and improve skin health. It also supports immune function and overall metabolic health.
- spearmint tea: aid with blocking DHT (a potent androgen causing hair loss and facial hair)
- N-Acetylcysteine (NAC): NAC is one of the precursors to your body’s master antioxidant “glutathione”, that can improve insulin sensitivity, reduce inflammation, and support ovulation in women with PCOS.
- Omega-3: Found primarily in fish or supplements, can help reduce inflammation, improve insulin sensitivity, and support cardiovascular health. Important to get good quality 3rd party tested fish or algal oil.
- Reshi mushroom: can help block DHT and reduce androgens along with calming the mind and body.
Conclusion
There is a lot we can do to help manage PCOS symptoms and help regain your cycles and fertility.
Remember that each case is different, and what works for someone may not work for you. It is, unfortunately. trial and error although we do have really good research backing many of these things I’ve mentioned above. Always talk to your doctor about what is right for you or if you want to try anything on my list.
I’ll do another post on more specifics of some of the diet, lifestyle and supplements I’ve mentioned. In the meantime check out my YouTube channel @caretotango for extra resources and info on PCOS and related content!
