According to the CDC, approximately 1 in 10 women of reproductive age have PCOS. Given that number, it’s likely that you – or someone you know – struggle with PCOS. But in case this is the first time you’ve heard this term, you may be wondering: what exactly is PCOS? How do you know if you have it? And how do you manage this reproductive health condition? We’re going to answer all these questions (and more!) in this comprehensive guide to understanding what PCOS entails, the process for getting an accurate diagnosis, conversations to initiate with your healthcare provider, and how to ensure you get the best, most holistic care if you are diagnosed with this condition. Here’s what we’ll be exploring in this article:
- What is PCOS?
- The Cause of PCOS
- How PCOS Differs From Endometriosis and Uterine Fibroids
- Seeking Out a Diagnosis
- Reducing Symptoms of PCOS
- Conversation Starters With Your Healthcare Provider
- 5 Questions to Ask Your Doctor
Let’s dive in.
What is PCOS?
PCOS stands for polycystic ovary syndrome, and the CDC estimates it impacts between 6% and 12% of women of reproductive age. PCOS is a reproductive health condition that typically manifests during puberty, but can also show up in your 20s and 30s. Unfortunately, for many women, they struggle with PCOS but go undiagnosed for years (if not decades, in some cases), because of a lack of general understanding of this condition in the healthcare community, medical gaslighting, and a host of other systemic problems that mean women’s (especially women of color, nonbinary, and trans folk) concerns go ignored. Things seem to be slowly changing, but know that if you feel unheard or ignored by your healthcare provider, that is not okay, and you should seek a second opinion!
The following are the most common PCOS symptoms that patients’ experience, but if you do not meet all of these, or only check off a few – or you have reason to believe you have PCOS – we strongly encourage you to speak with your primary care physician. PCOS is something that can be managed, but it is best done in conjunction with a compassionate, caring team behind you.
With that being said, let’s break down the physical characteristics of PCOS:
- Excess hair growth (hirsutism)
- If you find dark, thick hair on your cheeks, chin, breasts, stomach, chest, and backs of your thighs, this could be a sign of androgen excess.
- Hair loss
- This type of hair loss relates to thinning on the head. This hormonal-driven hair loss is often referred to as ‘androgenic alopecia’ or female-pattern hair loss, and is characterized by thinning or balding on the crown of the head, in particular around the middle part. Unlike male-pattern hair loss, women usually don’t see entire balding, with the front hairline preserved.
- Acne, particularly cystic acne, on your cheeks and chin can be a result of androgen excess, which often promotes increased oil production.
- Unexplained weight gain
- More than half of women with PCOS are overweight, and they often find it difficult to lose this unexplained weight gain, at least in part thanks to the accompanying insulin resistance.
- Irregular or absent periods
- If your periods occur closer than 21 days apart, or you go more than 35 days between periods, this is a sign of an irregular cycle. If you don’t have periods at all, this may be a sign you aren’t ovulating. One of PCOS’ main implications is that it disrupts your ability to ovulate regularly.
- Cysts on the ovaries
- Contrary to popular belief, not all women who have PCOS have cysts on their ovaries. Perhaps even more surprisingly, many women who don’t have PCOS have cysts on their ovaries, demonstrated by ultrasound scans. That being said, the presence of many cysts on ovarian follicles can lead to painful periods, and are often used as one of three criteria that are considered when doctors give a diagnosis. (These three criteria are popularly known as the Rotterdam criteria – learn more about them, and how they assist in diagnosing PCOS, here).
Given these symptoms, it appears that the underlying causes of this hormonal imbalance manifest themselves in physical symptoms. This can be extremely stressful and uncomfortable, but there is a positive side to this: your body is telling you something is out of balance, and once you receive a diagnosis, you can begin taking the right steps toward figuring out, and giving, your body what it needs.
So what causes PCOS?
Researchers and experts on this topic have investigated this question, and though there is no unequivocal answer just yet, they believe that it is a consequence of a hormonal imbalance and insulin resistance, which exacerbate one another and work to worsen PCOS symptoms. In other words, women with PCOS are not only thought to have an excess of male hormones (androgens) relative to women without PCOS, which are responsible for some physical symptoms we will explore in the next section, but they also have an excess of estrogen. This explains why women with PCOS can often have painful, heavy periods, breast soreness, and mood swings. In conjunction with this hormonal imbalance, it is thought that high insulin levels prompt the ovaries to produce more testosterone. This hormonal imbalance consequently prevents ovulation in many women, which leads to problems with fertility, cysts on the ovaries, and goes on to worsen insulin resistance in a vicious cycle.
It is also thought that PCOS has genetic factors and an element of heritability to it.
How PCOS Differs From Other Reproductive Health Conditions
Okay, so the root causes behind PCOS can sound pretty overwhelming and difficult to tackle, but luckily there are an increasing variety of treatment options available. We will break each one down in turn, but first, let’s make sure to clearly delineate PCOS from endometriosis and uterine fibroids.
Regarding PCOS and endometriosis, there are some crossover symptoms, such as irregular or absent menstruation, heavy periods, and pain both during and outside of period times. With that being said, PCOS is fundamentally a hormonal condition characterized by high testosterone levels and often insulin resistance, while endometriosis is characterized by tissue growing outside of the uterine cavity. According to Johns Hopkins Medicine, endometriosis impacts between 2% and 10% of women of reproductive age in the US.
This difference between the two reproductive health conditions is highlighted further when we examine symptoms of endometriosis, which can include:
- Painful bowel movements
- Painful urination
- Pain during sex
- Pelvic pain
- Digestive issues
- Intestinal pain
What causes endometriosis?
Unfortunately, the exact cause of endometriosis is unknown. One hypothesis suggests that from women with endometriosis, during menstruation, there is a phenomenon known as “reverse menstruation” in which some of the tissue broken down backs up through the fallopian tubes and into the abdomen. Another hypothesis posits that the endometrial tissue travels and implants itself via blood or lymphatic channels. As is typical with women’s healthcare, there is a lack of adequate funding and research into what causes endometriosis, though evidence suggests that risk factors for endometriosis include:
- Women who have a relative with endometriosis
- Women giving birth for the first time over 30
- Women with an abnormal uterus
What about uterine fibroids?
Uterine fibroids are growths that are noncancerous and often appear during a woman’s reproductive years. They range in size, and most women at some point in time will experience uterine fibroids (though they may not know it, because in many cases they cause no symptoms and are only found during a prenatal ultrasound or pelvic exam). On the other hand, uterine fibroids can prove painful and problematic for some women, depending on the size and placement of the fibroid. Symptoms of uterine fibroids include:
- Heavy menstrual bleeding
- Periods that last more than a week
- Pelvic pressure or pain
- Frequently having the urge to urinate
- Backache or leg pain
When uterine fibroids become a problem
In rare cases, a fibroid can bring a woman extreme pain when it outgrows its blood supply and begins to die. Generally, fibroids do not cause intense pain, but for women whose fibroids trigger physical symptoms, they can be difficult to live with. For instance, in some cases, fibroids can bring on pelvic pain that is difficult to relieve, long and heavy periods, as well as an unexplained low blood cell count, in addition to spotting or bleeding during periods. If you experience these symptoms, it is of utmost importance that you speak with your primary care physician and discuss your symptoms and concerns.
Seeking a Diagnosis
PCOS is often diagnosed using a set of criteria called the Rotterdam criteria. This criteria require two of the following to be present:
- Irregular periods or no periods
Irregular periods: The menstrual cycle begins from the first day of your period to the first day of your next period, with the average menstrual cycle hovering around the 28 day mark. Menstrual flow occurring every 21 to every 35 days is considered normal, with a flow that lasts two to seven days.
If you get your period more often than every 21 days, or you go longer than 35 days between periods, then that is considered irregular. Additionally, if you have ‘slightly irregular’ periods (between 32 and 35 days apart), your doctor may order a blood test mid-cycle to check your progesterone levels.
Missed periods: If it’s been 6 weeks and you have not experienced bleeding, then this is considered a missed period. Though missed periods can also be triggered by stress, weight loss, and other environmental influences, if you have lighter than normal bleeding, or your periods have disappeared altogether, this is a cause for concern and should be discussed with a healthcare professional.
Important note here: if you are on hormonal birth control, you will not have a regular period but something known as a ‘withdrawal bleed.’ This is not the same as a period, so your doctor will check for the following 2 criteria instead, or they may ask about the nature of your periods before you went on birth control.
- Higher levels of androgens present in the blood, or evidence of excess testosterone from physical symptoms
In some cases, physical symptoms of androgen excess (such as acne, hair loss, and hirsutism) can be enough for your doctor to tick this box for the Rotterdam criteria. In other cases, you might want a more in-depth profile of what is going on in your body, particularly if you or your doctor suspect a thyroid disorder or want to rule out other reproductive health conditions. In this case, a full hormonal and metabolic panel can be extremely useful.
For example, Allara’s PCOS metabolic and hormonal testing delivers exact results on the following:
- LH levels
- Important for fertility and ovulation
- FSH levels
- Important for fertility and ovulation
- Total and free testosterone
- A common culprit for the physical symptoms of PCOS
- DHEAS levels
- Also associated with hyperandrogenism
- A steroid hormone known for its androgenic effects
In the case of Allara, they may also check for insulin resistance and your cholesterol levels, scheduling a 30-minute follow up consultation to go over the root causes, your results, and next steps.
- Cysts on ovaries detected during ultrasound
Ovaries that have a high number of follicles (fluid-filled sacs) on them can be the result of anovulation. Ovarian follicles contain egg cells which are released during ovulation, but because of the hormonal imbalance characterized by PCOS, if ovulation occurs irregularly or very rarely, they can accumulate.
Typically the threshold for ticking this Rotterdam criterion is 12 or more follicles on an ovary. Check out an in-depth explanation of how ultrasounds work to diagnose PCOS.
Reducing Symptoms of PCOS
Upon first learning about PCOS, and for many women, being diagnosed with PCOS after years of unexplained symptoms, it can feel overwhelming trying to figure out how you want to manage it. Unfortunately, many primary care physicians’ haven’t caught up to existing research and innovations to manage symptoms, and patients often find themselves with one option: go on birth control, and revisit the issue of PCOS when trying to conceive.
But what about those of us living with PCOS in the meantime? And what about those people that cannot, or choose not, to opt for hormonal birth control? The assistance from traditional healthcare providers can feel suddenly nonexistent.
That’s why we’re going to briefly talk about some effective options for managing your PCOS symptoms, depending on how they manifest, what time of month they are more apparent than others, and what your personal preferences are.
This category encompasses mostly Western medicine options.
- Used to encourage a regular period, control insulin resistance, and promote ovulation, this medication is often used off-label.
- Again used off-label, this medication is used to reduce hormonal acne and slow, or stop altogether, androgenetic alopecia (hair loss) caused by androgen excess.
- Birth control pills
- The combined pill is used to try to balance hormones and reduce unpleasant symptoms associated with PCOS (such as excess hair growth, acne, and hair loss).
- Holistic care
Supplements, essential oils, and self-care can be incredibly important when it comes to protecting your physical and mental health. Here are some options for looking after yourself when symptoms flare up:
- Lola’s essential oil blend
- One of our most loved products, this 17-essential oil blend works to reduce cramp pain upon application. Fast-acting and natural, this option is great for those who suffer from menstrual pain.
- 11-hour heating patch for on the go
- Heating pads and patches are thought to reduce menstrual cramps by increasing blood flow to the area and alleviating uterine contractions
- Lubricant for sexual pleasure
- Pain during sex can be an unfortunate consequence of PCOS and endemetriosis, as a result of medication, emotional turmoil, ovarian cysts, and more. If you do experience pain during sex though, it’s critical you speak to your doctor to find out the underlying cause. All that being said, you deserve to enjoy pain-free, pleasurable sex – and lube can be a great way to help with that.
- Fertility care
PCOS is a leading cause of infertility, alongside endometriosis. For many women, this can be a very stressful time. Alongside working with a trusted fertility expert, your primary care physician, and gynecologist, it can be beneficial to explore other avenues to making your journey to pregnancy feel easier where possible, which may include:
- Fertility-friendly lubricant
- pH balanced for sperm health
- Ovulation test
- For detecting LH surges, to help you pinpoint the 2 days you are most fertile.
Conversation Starters With Your Doctor
Finally, here’s an essential-questions guide for your first meeting with your primary care physician regarding a PCOS diagnosis. Of course, change the wording as you see fit, and if you have any more concerns or questions, 100% be sure to ask them! This is your long-term mental and physical wellbeing, and you deserve accessible, compassionate care at all times. No exceptions.
- How will I be tested for PCOS?
- Will I be tested for other conditions as well as PCOS, such as Hashimoto’s, a thyroid disorder, or endometriosis?
- What tests will you run, and when can I expect the results back? Can I receive a copy of those results?
- If I have PCOS, what treatment options would you recommend?
- How many times per year should I schedule a follow-up appointment to discuss my PCOS symptoms and treatment plan progress?
Allara Health provides personalized treatment for hormonal, metabolic & gynecological conditions that utilizes a holistic plan that merges nutrition, lifestyle, medication and supplementation, and ongoing, expert support to heal your body.