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!
Resources
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
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Thank you for this post, Robyn! I was diagnosed with PCOS (by three doctors, no less) back in January 2017. I’ve experienced a variety of symptoms, like hair loss (and hair growth). No fun. That said, a few things that have been tremendously helpful for me: lowering chronic stress — I no longer put my body under the stress from daily, intense workouts and I rest more than I move my body during the week; I also left a job that was causing daily (and unnecessary) stress as well. Stress, as I’m sure you know, is a major progesterone-stealer. Sleep has been crucial too. Under the care of a functional medicine doctor, I am taking supplements, like pregnenolone, myo-inositol, and methyl-guard. Lastly, I’ve increased my healthy fats, including a wide variety of nuts / seeds and animal fats, like ghee. Back in November, I had high fasting glucose levels, so I ever since then, I’ve made sure to start my day with plenty of healthy fats and a more ‘moderate’ amount of carbs. But, I haven’t — and will not — ever go low carb. IMO, that’s one of the worst things you can do…whether or not you have PCOS. Anyway, since I made these changes, I’ve been able to get my cycle back! My testosterone and estrogen are back in normal ranges, but my progesterone is still on the lower end. I’m continuing to work on that. 🙂
I’m looking forward to part II of this post!
Thank you for sharing your journey and story Edie! It’s certainly not an easy road, but I’m so glad you’ve found positive outcomes to the changes you’ve made and have had a great experience with your doctor. Thank you for being an encouragement!
Robyn, I have PCOS. I worked with a np for a year trying to manage symptoms and heal naturally to no avail. If anything I got sicker. We tried lifestyle change, supplements, months passed and I kept getting worse… It is frustrating that you shoot down the only things that are helping me now. I got back on birth control AND spiron. about two months ago and I am seeing a huge improvement, huge relief, emotionally and physically.
Most np’s do not accept insurance, so all of that money was out of pocket- all the supplements she recommended that helped very little were OOP- and I was SUFFERING. horrible acne, no pregnancy, painful horrific irregular periods, cyst burst, weight gain even though I was sleeping well, eating well, and exercising. I cannot afford the kind of patients she required.
And before anyone shames me about how birth control is a bandaid or a quick fix, I challenge you to go through the pain of cysts and the mental mind-games of acne, weight gain, and hair when you’re 30 and the only one of your friends without children. I needed help and the np kept telling me to wait, tweak this, buy this supplement. A year in, I couldn’t take it anymore. And because i have read a million posts like this, i felt SO MUCH SHAME for accepting the medicine my doctors recommended for me.
I read things like this, when you and many others get down on medicine and give no credit to the fact that sometimes people dont have the money or frankly the emotional capacity to go the “natural route”. Sometimes the medicine, while maybe not the long-term solution, can give someone enough of a break to get some breath back in their lungs. I was one step away from loosing my mind waiting for something to happen when my OB told me to step back and consider medicine and thank god i did.
I respect you immensely and read all your posts, but feel like you alienate and inadvertently shame people with real conditions for taking medicine that gives them relief. I was so excited to read what you had to say and closed the tab feeling so ashamed.
I dont want any woman who is suffering from PCOS to read this and feel like they’ve made the wrong choice by listening to their doctors and taking medicine to feel better. Each woman has to do what is right for her body and life at that moment: financially, emotionally, physically. I am not trying to be disrespectful or hateful, I just hate the idea of someone reading this and feeling the way i do.
Thank you for this – completely agree with everything you say. Robyn, I respect and admire you too, but quite frankly you’re too young and too new to the medical industry to already have such strong opinions on a lot of matters in relation to the above. I would challenge you to have a more open mind on lots of what you preach, because you still have a ton to learn
Hi Meg – thanks for commenting. I am certainly not throwing the baby out with the bathwater and have said a few times in the post that I’m not anti-medication at all and that medications can certainly be a helpful tool. If it’s helpful for you – my reply to C.Delynn is below. Like I wrote in the post, I of course have a lot to learn. 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.
Hi C. Delynn – thank you for bravely and honesty sharing your thoughts here and opening up this discussion. I only know the bits of information about your experience that you’ve shared with me – I’m sorry you feel really frustrated by the expense and little, if any relief you felt with your NP. And I’m really sorry that to get that care required a lot of money that I totally agree, most people simple don’t have access to. From your comment I am sensing that this post brought up a lot of feelings for you from your past experiences and judgment that you’ve felt from others which is completely human and understandable and my words may have been taken out of context a bit. I want to copy and paste the sentences in the post below here to illustrate that I am not throwing medication out the window and I agree with you that you should not have to suffer through all these symptoms. I think we can absolutely use tools like medication to give some breathing room while we are continuing to address the root cause.
I believe that doing what we can to manage these symptoms while also addressing the root cause is really important. I’m not saying medication is never helpful, it certainly can be, but we have to recognize what medication is doing and what it isn’t doing.
Every woman is different and healing is going to look different for everyone. I’m really glad that you are feeling better and finding relief and like you said, if the treatment is causing you MORE stress than it certainly isn’t helpful! I hope that helps for you and know that I would never want this to be a place that brought you more shame <3
Thank you for responding. It’s been such an emotional process because i so believe in our bodies and the way they are made. I want to function healthfully without medicine and birth control. I truly do. So it is sensative to hear I’m not addressing the root cause when sometimes I wonder if the root is that my hormones are just broken and medicine is what will heal them. SO many bloggers are passionately against birth control (and so many other things) but it’s been the only thing that’s helped me.
All in all, it’s just been a hard year feeling like I failed to heal naturally. I appreciate the research you put into this post and think it’s great for people to read and understand what PCOS is. Thank you, truly, and I look forward to reading the second one.
Thank you for your thoughtful reply C. Delynn – I think that medicine can be an adjunct to lifestyle and it doesn’t have to be all or nothing. I can 100% understand how you are feeling and I hope that these posts to come will be a helpful space for you – if you have topics or questions you’d like addressed, I’d love to do my best to do that for you if I can. You’re anything but a failure – I’d actually say you are quite brave given everything you’ve been through and your honestly and vulnerability in these comments. <3
This was an interesting read. Oral contraceptives masked my PCOS (and gave me beautiful skin!) for 10 years. When I went off the pill, infertility became an issue that drug on for 4+ years. I was on metformin for most of that and it never did exactly what the doctors wanted it to do.
I think it’s worth being said that because PCOS presents differently in everyone, it’s kind of subjective to the doctor. We moved in the middle of my diagnosis and my 4 different doctors all had their own opinions about what was actually wrong so it was just a lot of tests and waiting and fertility treatments. The very first doctor I saw told me I was in premature ovarian failure at age 27, instead of looking at all the symptoms I did have.
Looking forward to the next post!
Thanks for your input Kristin – everyone’s experience will be different. Glad you enjoyed the post!
Hi Robyn!
I am a faithful reader and I have been anxiously waiting for you to write a post on PCOS. I was diagnosed with PCOS when I was 17 years old and went on the birth control pill when I was 19 because it helped me get a “regular” period, helped with my acne and hair growth and helped prevent children. I am now 27 and stopped the pill about 8 months ago and have only had 1 period since (my acne and hair growth have both come back too). I was pretty disappointed because I really had hoped it was just a “teenage” thing that I would grow out of with healthier habits (even though in the back of my mind I knew this wasn’t the case). I really value your opinion and am looking forward to hearing your suggestions! We have a couple of years before my husband and I would like to start trying for children so I still have some time and patience to try other lifestyle changes to see if they will help me get my period back and alleviate my symptoms. One question that I have is if me not getting a period for an extended length of time puts me at higher risk of endometriosis or endometrial cancer? My doc mentioned I should go back on the pill or at least the progestin only pill so that at least my uterine lining would shed regularly to prevent build up but I’m not sure. I obviously don’t want to put myself at risk for anything else. Anyways, would just appreciate your opinion. Thanks again and looking forward to your next post!
Hi Sydney – thanks so much for sharing your story! That’s a great question. I’ll do my best from what I know to shed light on this 🙂
Thanks so much, Robyn! Really looking forward to the rest of this series. 🙂
Hi Robyn, thank you for posting about PCOS. I am most interested in learning more about insulin sensitivity and PCOS in the next post because I am a type 1 diabetic. My doctor tried putting me on metformin last summer, with the disclaimer that it might not do anything at all. I stopped taking that and birth control in the fall. I know you have said many times that low carb is not the answer for PCOS, but I wonder if that is still the case for a T1D with PCOS… also understand if you can’t really cover that in a broad post for the general public…
Robyn – I can’t tell you how much I love this post and look forward to learning more about what evidence is supporting for alternative treatment! You have done a great job of explaining the “why” of the condition and treatments rather than just what they affect in a way that is both easy to understand, but very descriptive. This is the first time that I have truly understood why this condition (which seams like such random side effects) impacts my body in the ways that it does. As an OTD, I am passionate about understanding why things work so that I can implement them into my routine in a way that fits my lifestyle.
I was diagnosed with PCOS about 5 years ago; with symptoms beginning, yet un-diagnosed about 10 years ago when I was 15. When first diagnosed, I was prescribed oral-contraceptives for 4 years to “treat” the condition. At the time I only knew that my symptoms were amenorhea, hair-loss/thin hair and more hair on my body that I would ever want. I got my period, so I assumed all was well and all but forgot that I had the syndrome. In fact, I’ve had one OB/GYN tell me that there was no way I had PCOS because I wasn’t overweight and my fasting blood sugar was within normal ranges.
It wasn’t until this last year of fertility treatments with a reproductive endocrinologist that I have really began to learn about this condition and recognize that I have many more symptoms that I never related to being caused by PCOS. I have now been taking increased doses of Metformin for the last 6 months with no improvement of symptoms. The only physiological changes I have noticed pertain to negative side-effects of the medications I have been prescribed.
Any research that I have done suggests lifestyle changes that are completely unrealistic for me (as a foodie and admitted carb lover who is 1 month graduated from professional school and nervously beginning a new career while trying to get pregnant). I believe in the moto “all-things in moderation,” so I look forward to reading your suggestions for lifestyle changes that will hopefully guide my behaviors without being seemingly unrealistic. I am passionate about addressing the behaviors that I engage in that may contribute negatively to my symptoms in order to prevent dependency on medications to cover-up the damage. I eagerly await your upcoming post to better understand how I can improve my own health and allow my body to function optimally.
Thank for for a(nother) great post!
For any lady out there with PCOS who thinks they are destined to infertility…I was diagnosed with PCOS and got pregnant after only two months of trying. I was shocked because I was under the assumption it would take forever to conceive. At 19 weeks, I’m healthy and baby’s healthy. Yup I still have some black hairs sprouting out of my chin here and there but I accepted it and just pluck em out! There is hope!! Nourish yourself, keep a positive attitude and educate yourself (would recommend reading Taking Charge of Your Fertility). Good luck!
My daughter who is 17 was been diagnosed with PCOS a couple of years ago. The doctor immediately put her on birth control pills, spironolactone, and metformin. She had terrible side effects to all of them at one time or another and had to be taken off them. We have tried to natural route, seeing a naturopath. It has helped a little but she still has hair loss, acne, extremely oil skin, very painful periods which are not consistent. The naturopath has her on ALOT of supplements which is hard to manage. I am looking forward to hearing your suggestions. Thank you for taking time to write this post and help others!
Hi Robyn!
Thank you so much for this super discriptive piece on PCOS! I have struggled with trying to figure out where i fit in with everything. Now i know that i find myself under the “mild” PCOS category and do not have abnormal thyroid or testosterone levels. I have been able to easily get preganant however both those pregnancies unfortunately ended in miscarriage at 6 weeks. Before the last pregnancy I was put on metformin to try and get my periods to regulate but still finding I ovulate really late.
I would be curious to know what the healthy lifestyle/eating habits look like for someone with Mild PCOS. I’ve been a runner since I was 10 (started lowering mileage and slowing down since trying to conceive), am a normal weight/BMI, I don’t eat dairy and try to stay away from hormones in meat. Would love to know what else i can be doing to tty and heal my body.
Thanks so much!!
Kelsey
Oh man! How I wished I had this information over 25 years ago! I diagnosed myself with minimal available resources and many times was put on “trial” medications. I asked my OB/GYN about it and she said “yes, I think you might have it”. Mine started with hair loss and facial hair growth after the birth of my daughter. I was only 19 years old. While I went through these physical changes alone, I felt alone in my pain. I thank you for adding a non-diet perspective because for me it only caused more shame when I “failed”. I am slowly but surely working to like myself for who I am.