PCOS is a topic that gets brought up often in client sessions, in conversations with other clinicians, when talking with friends and when I talk with women in my online course during our weekly live Q&As. PCOS is one of the most common metabolic/endocrine disorders in women so it makes sense that we hear about it often. But even though we hear about it often, things get sticky when we talk about treating and managing PCOS because women get such conflicting advice. There are so many unanswered questions. And many of the quicker “solutions” seem to leave women feeling frustrated. PCOS is complex and has many moving parts, so my hope for this blog post series is to provide a clear understanding, some relief, a lot of compassion and empathy, and some tools you can implement into your own life as you partner with your health care provider and other clinicians in your healing journey.
So what even is PCOS?
PCOS stands for polycystic ovarian syndrome. Like the name implies, PCOS is a syndrome which means that it’s a group of symptoms that occur together to varying degrees and they cause disruptions is the body’s normal physiology. For women who have PCOS, they might experience all of these symptoms or some: anovulation (meaning you don’t ovulate), menstrual irregularities, infertility, increased production of hormones called androgens (for example testosterone), and insulin resistance.
In order to diagnose PCOS, we use something called the Rotterdam Criteria. Your health care provider (HCP) will get a history, perform a physical exam, draw labs and order a transvaginal ultrasound in order to diagnose PCOS. Through this process, your HCP will also rule out other causes of your symptoms. In order to be diagnosed with PCOS, you have to meet criteria and have all other causes for your symptoms ruled out. To learn more about diagnosing PCOS, you can listen to this video I did last year here.
We don’t really know what causes PCOS. It’s likely genetics combined with environmental factors, where a woman is more prone to PCOS because of genetics and then environmental triggers set off the endocrine cascade that leads to PCOS. With that said, the etiology of PCOS remains largely unknown. So far that there isn’t a definitive pathway to explain the internal and external manifestations of PCOS. But we know that insulin, progesterone and testosterone play large roles.
We also know that women with PCOS typically have insulin resistance and excess amounts of insulin that causes metabolic problems and affects the hormones that control your menstrual cycle. Women with PCOS typically have a high LH to FSH ratio, meaning your LH levels are typically about double your FSH levels. The elevated LH levels causes the body to produce excess testosterone and lower FSH levels mean your follicles don’t get stimulated and therefore don’t release an egg leading to an absence of or irregular ovulation. When you don’t ovulate, you don’t produce adequate amounts of progesterone. When these hormones are imbalanced and you have high levels of androgens (testosterone being one of them), that’s when you experience excessive hair growth on your face and body (the medical term is hirsutism), hair loss on your scalp (the medical term is alopecia), skin problems and acne, and irregular periods, absent periods and/or heavy/painful periods.
Not all women with PCOS are insulin resistant and whether or not a woman experiences insulin resistance has nothing to do with her body size. But with that said, most women who have PCOS do have insulin resistant PCOS. Insulin is a hormone many people have heard about. It’s main job is to get glucose out of your bloodstream and into your body’s cells to be used up as energy. Insulin plays a very large role in our body’s metabolism and hunger/cravings. Being insulin resistant means cells in your body don’t respond to insulin like they should. And that means that glucose doesn’t get from your bloodstream into your cells for energy like it should. So you end up with higher levels of glucose in the blood and cells that are starved. So even though you just ate, your cells still need energy.
Insulin resistance can cause many long term health problems like diabetes and cardiovascular disease. That isn’t to create fear, but simply to educate. By managing insulin and blood sugar with many tools including health promoting behaviors (not dieting and other unhelpful, extreme behaviors) you can avoid these chronic conditions which is great news!
Insulin is a growth hormone, and when you have high levels of it, pursuing weight loss is like trying to climb Mt. Everest. Unless you do something really extreme, your weight is not going to change. Extreme dieting and/or exercising is unsustainable leading to regaining the weight, a diet/binge cycle and feelings of shame, guilt, anxiety and depression. To save time and not reinvent the wheel, my friend and fellow RD Rachael Hartley wrote a great post that explains why dieting is the worst thing you can do for PCOS and why weight loss isn’t the answer to managing PCOS. I hope that is relieving for many people reading. She also wrote this post talking about how dieting and the goal of weight loss puts a woman at high risk for disordered eating and an eating disorder – I highly recommend reading these posts.
It’s worth reiterating that the research is very clear that long term, dieting does not result in weight loss. Short term yes, diets work. But over, almost everyone who diets regains the weight and then some. Diets make you vulnerable to weight gain, not weight loss.
Are there different types of PCOS?
There are different types of PCOS and therefore the approach to each type will have some variation. The different types of PCOS depend on a few factors:
- ovulation – do you ovulate or not? and if you do ovulate, do you ovulate consistently or not?
- androgen levels – do you have elevated androgen levels or not? high androgen levels (like testosterone, DHEAS and androstenedione) are what cause the noticeable symptoms like excess facial and body hair, acne, and hair thinning on your scalp
- cysts on your ovaries – do you have cysts or do you not? you have to have a certain number of cysts seen on ultrasound for this to contribute to 2 out of the 3 criteria needed for diagnosis
Classic (aka “frank”) PCOS is when you have all three of the above – irregular ovulation or no ovulation at all, high androgens and cysts on your ovaries. Then there is non-polycystic ovary PCOS where you have the first two, but no cysts on your ovaries. Ovulatory PCOS means you have cysts and high androgens, but you ovulate normally. And lastly, mild PCOS means you have cysts and irregular or absent ovulation, but you don’t have high androgen levels, therefore you don’t experience excessive facial/body hair, acne and hair thinning on your scalp.
Unfortunately, classic PCOS comes with more intense symptoms and is associated with more negative health outcomes. But women in all kinds of body sizes have varying types of PCOS – there is not a certain body size that is associated with the different types of PCOS which is a common misconception.
Now that we’ve laid some ground work for PCOS, let’s talk about what you can do about managing your PCOS. If you have received a clear and definite proper diagnosis of PCOS, you’ve likely heard both some helpful and unhelpful advice on how to manage your symptoms and/or perhaps some really scary information involving your fertility. Getting a diagnosis of PCOS can be a scary, unfamiliar and lonely place. Please know that you are not alone. PCOS is common and so many women are affected, yet many suffer in silence due to the stigma and shame surrounding PCOS. Know that you didn’t do this to yourself, your body is not broken, and there is nothing wrong with you. Having PCOS has zero contingency on your worth and value as a woman. Your body happens to be more vulnerable to PCOS than other people who don’t have PCOS and while that sucks and isn’t ideal, there are many things that can be done to help you heal, manage and improve your PCOS. Everyone is different and that means everyone has different needs, therefore what works for one woman with PCOS might not work for another. The optimal treatment approach for PCOS in multifactorial – lifestyle modifications, psychological treatment, supplements, and medications all play a role.
We are going to get into some things you can do to help improve your PCOS and care for yourself in next week’s post, but before we do that let’s talk about things that can be helpful in the short term and can be used as one tool to help with PCOS, but aren’t necessarily going to address the root cause of PCOS which is why they can be used in addition to lifestyle changes.
Oral contraceptives are really good are doing just that, being a contraceptive so you don’t get pregnant. I think using medications for what they are suppose to be used for is awesome. But I think that we have to be thoughtful and informative when using medication for symptom management so you as the patient know what the mediation is doing and what it’s not doing. I have a whole lot to learn when it comes to medicine, nutrition and nursing. I don’t know even a fraction of everything. There are really brilliant HCPs out there. But unfortunately, oral contraceptives are routinely prescribed to manage PCOS without giving a woman more tools to help with lifestyle. Oral contraceptives (if a woman is not trying to conceive) which will keep androgens low so you get relief from symptoms like acne and facial hair. But the problem is that this medication alone doesn’t address the root cause so when women come off the medication they experience the same symptoms and that can be frustrating.
Oral contraceptives are also given to help “regulate” a women’s period. I put that in quotes because having a period on birth control isn’t a period. I say that in the most non judgmental, purely factual way – birth control works by inhibiting ovulation. When you bleed on birth control, it’s a withdrawal bleed since you stop taking the hormones for a short period of time, it’s not a true period. No matter why you’re taking birth control, I think it’s really important to note that just so you know that getting a “period” on birth control doesn’t directly indicate everything is working like it should. If you’re using birth control for contraception you could very well be totally healthy and there is nothing wrong with using birth control for that – it’s what it was intended for!
Spironolactone is another medicine prescribed to help lower androgen levels. It’s known as a diuretic, but has an androgen lowering effect. There certainly is a time and a place for medication in the treatment of PCOS, but I think it’s really important to recognize this medication doesn’t address the root issue, but it can be helpful to manage symptoms while changing lifestyle factors and as an adjunct to lifestyle changes.
Although oral contraceptives and spironolactone are helpful for symptom relief, they don’t address the insulin resistance piece that many women face. So while your outward symptoms might be managed with these medications, internally your body still greatly suffers.
I think it’s really important to note that these symptoms like excessive hair growth and acne are hard to deal with physically and emotionally. They can be embarrassing and cause a lot of shame. That’s really really hard to cope with. I believe that doing what we can to manage these symptoms with medications while also addressing the root cause can be really helpful. I’m not saying medication is never helpful, it certainly can be, but it’s important to know what medication is doing and what it isn’t doing so you as a woman can make a decision that is best for you. This is a completely personal decision and there is no right or wrong answer.
Lastly, metformin is a medication prescribed to help with insulin resistance and ovulation. It works by improving glucose uptake into your cells and increasing insulin sensitivity. It also decreases the amount of glucose your liver makes and decreases the amount of glucose your intestines absorb. This all works to help manage your blood sugar better and help you body to utilize insulin better. I’ll talk about this more in the next post, but there is some really cool research out there with compelling evidence for alternatives to metformin when it comes to improving insulin resistance and ovulation.
PCOS is complex, multifactorial and affects women differently and to varying degrees. If you do have PCOS or know someone with PCOS, there is so much than can be done to help you heal and manage this condition. I’ve worked with many women who have experienced huge positive shifts in their symptoms and regained a regular menstrual cycle through a variety of tools. There are a lot challenges to work through, but I truly believe that with the right strategies and support women can greatly improve their PCOS symptoms and live a fulfilling, meaningful life. Because PCOS has such significant metabolic component, lifestyle changes can be a powerful tool in managing symptoms.
Come back next week for a post on how you can care for your body to improve your PCOS and some more resources for you to continue your journey. I’d love to hear your thoughts in the comments!
Clark, N. M., Podolski, A. J., Brooks, E. D., Chizen, D. R., Pierson, R. A., Lehotay, D. C., & Lujan, M. E. (2014). Prevalence of Polycystic Ovary Syndrome Phenotypes Using Updated Criteria for Polycystic Ovarian Morphology: An Assessment of Over 100 Consecutive Women Self-reporting Features of Polycystic Ovary Syndrome. Reproductive Sciences, 21(8), 1034–1043. http://doi.org/10.1177/1933719114522525
Richard S. Legro, Silva A. Arslanian, David A. Ehrmann, Kathleen M. Hoeger, M. Hassan Murad, Renato Pasquali, Corrine K. Welt; Diagnosis and Treatment of Polycystic Ovary Syndrome: An Endocrine Society Clinical Practice Guideline, The Journal of Clinical Endocrinology & Metabolism, Volume 98, Issue 12, 1 December 2013, Pages 4565–4592, https://doi.org/10.1210/jc.2013-2350
Rosenfield, R. L., & Ehrmann, D. A. (2016). The Pathogenesis of Polycystic Ovary Syndrome (PCOS): The Hypothesis of PCOS as Functional Ovarian Hyperandrogenism Revisited. Endocrine Reviews, 37(5), 467–520. http://doi.org/10.1210/er.2015-1104
Traub, M. L. (2011). Assessing and treating insulin resistance in women with polycystic ovarian syndrome. World Journal of Diabetes, 2(3), 33–40. http://doi.org/10.4239/wjd.v2.i3.3