Updated PCOS Guidelines: What You Need to Know
Guest post by Rashmi Kudesia, MD MSc
This year, we have seen some significant advancements in awareness of polycystic ovary syndrome (PCOS) in the general population. Though it has not generated quite as much press, what is actually more notable for women with the diagnosis is the release (just a few months back!) of a lengthy new set of guidelines for diagnosis, evaluation and treatment of PCOS. Today, I’ll be breaking down the basics of this document and highlighting the parts that you should know to best advocate for your health!
First of all, the great news is that this article is open-access, meaning anyone can access it by visiting here. The second great aspect of this effort was its truly collaborative nature. Spearheaded by an Australian team, the project was executed in partnership with professional groups in both Europe and the USA, and included both healthcare providers from a variety of specialties, as well as patient advocates! Third, its scope was broad in nature, and indeed, the team ultimately produced more than 150 recommendations and practice points to overall: refine diagnostic criteria, reduce unnecessary testing, increase the focus on education, lifestyle modification, emotional well-being and quality of life, and emphasize evidence-based medical therapy with cheaper, safer fertility treatment. So, let’s dive in!
The consensus follows the Rotterdam criteria. I’ve defined this before, but essentially it requires at least two of the following three signs or symptoms: irregular or absent ovulation, bloodwork or clinical symptoms demonstrating high androgen levels, and polycystic-appearing ovaries on ultrasound. With regards to an ovulatory disorder, within 3 years after the first menstrual period, a girl should expect cycles that are between 21-35 days in length. This part is important to me, as many people hold the misconception that it’s normal for teenagers to have irregular cycles. Even in the 1-3 years immediately after the first period, cycles should be coming every 21-45 days, and if that’s not the case, medical attention should be sought. Even an adolescent who may be too young to get a firm diagnosis can be identified as at “increased risk”, allowing her and her family to educate themselves and make the appropriate lifestyle changes to protect her health and fertility. If not on some form of hormonal contraception (pills, progesterone-eluting IUD), it is important to maintain regular menstruation to decrease the risk of endometrial malignancies in the future.
With regards to bloodwork testing of androgens, there are many limitations. The long story short is that doing your bloodwork with an endocrinologist may help ensure that the tests are being done via the most current methods, which guarantee the most accurate results. As to the clinical symptoms, the guidelines highlight not only hirsutism (excess facial and/or body hair), but androgenic alopecia (male-pattern baldness) as well, which are both extremely disruptive to quality of life and deserve treatment.
Updated guidance on what constitutes polycystic ovarian morphology (PCOM) on ultrasound is also delineated – and remember, it does not have to do with having cysts! The PCOS name can be so misleading, and I have lost count of how many patients came in with a wrong diagnosis of PCOS just because they had one cyst at some point along the way. PCOM has to do with how many small follicles (the fluid-filled sacs inside of which the eggs grow) are present on each ovary, or the ovarian size. Often times, we put that follicle count in the same category as other ovarian reserve tests, namely the AMH (anti-Müllerian hormone) test. However, the guidelines reiterate that AMH is not yet part of the diagnostic criteria (though maybe eventually we will refine the test sufficiently to change this!).
Perhaps one of the biggest concerns related to PCOS is the cardiovascular complications – the elevated risk for insulin resistance, weight gain, diabetes mellitus and metabolic syndrome. These risks can be exacerbated by high-risk ethnicity, particularly being Latina or South/Southeast Asian. It is absolutely critical to remember that even thin women with PCOS can develop these cardiometabolic issues, and so regular screening is essential. In an ideal world, this ongoing assessment would include: weight and body mass index calculation, waist circumference, testing of lipid profile, blood pressure and sugar control. This testing is particularly important prior to pregnancy and/or during fertility treatment, given that undiagnosed diabetes, hypertension or their precursors are likely to worsen during pregnancy. These conditions can also be worsened by sleep apnea, where one’s breathing is disrupted during sleep. Simple screening tools can identify if you have the symptoms and should move forward with a sleep study.
The next section covers the quality of life aspects of PCOS that have historically not gotten as much attention – risks of anxiety and depression, reduced psychosexual function, negative body image and eating disorders. These are all more prevalent in women with PCOS, and the appropriate screening and treatment are discussed in detail. Though these are complex issues that should involve a multi-pronged approach, I think the most important thing is to realize that these risks are there, and that if you’re feeling a certain way, you’re almost certainly not alone! Identifying the struggles you are facing in this arena is the most important step one, and with the right care team, substantial improvements can be achieved.
Recommended Lifestyle Interventions
The effectiveness of lifestyle interventions is also discussed in detail. By taking a SMART (specific, measurable, achievable, realistic and timely) approach to goal-setting, overweight women with PCOS can achieve a 5-10% weight loss that has true clinical significance. I believe that the explosion of obesity and metabolic syndrome across the globe makes this section an absolute must-read for everyone. The reality is that many physicians’ offices may not be very capable of helping you set and achieve your SMART goals. If not, ask for referral to a specialist who can. More and more healthcare providers are choosing to focus in this area, and you should seek such a consultation, even if it’s remotely given your geographic location. Don’t fall prey to weight-loss supplements or fad diets – the way (for better or worse!) to achieve long-lasting, truly meaningful improvements in weight is by following an evidence-based approach to diet and exercise. These are described in detail in the guidelines, so please go read the whole section!
The Birth Control Pill
The last sections deal with medical and fertility treatment. First, the guidelines discuss the use of oral contraceptive pills (OCPs) as a first-line treatment for irregular cycles and hirsutism. [As an aside: though some women do not prefer to take OCPs, and while I completely agree that OCPs should not be used as a Band-Aid for a poor lifestyle or facilitate one to ignore changes in their gynecologic health, they most certainly can help control symptoms for many women, and don’t deserve a bad reputation when used properly with the right education and empowerment.]
Next up is one of the most misunderstood medications in PCOS: metformin. Though trends have come and gone with metformin usage, the conclusion at this time is this – alongside diet and exercise, metformin can help with weight maintenance or reduction. It is not necessarily the right choice for every woman that has PCOS! There are also more targeted anti-obesity medications that might be a better choice, as well as bariatric surgery. These decisions are so individualized that if you are considering any of them, or struggling with weight, you should really talk it all over with a trusted healthcare provider that can help you elucidate the pros and cons of each approach.
In the fertility world, we’ve known for a few years now that letrozole is the best choice for ovulation induction. If you are being put onto clomiphene citrate without mention of letrozole, get a second opinion! Your physician may not have the most updated guidelines, and you should seek care with someone who can get you the best outcomes. I am even more wary of injectable gonadotropins in the context of timed intercourse or insemination cycles! Though these guidelines suggest that injectable gonadotropins could be used with much more laxity than I advise (including as first-line after counseling), I think the most significant caveat is that they suggest canceling a treatment cycle for more than two follicles. It can be very tricky to control injectable gonadotropins to get follicular growth but only 1-2 follicles! Make sure you clearly understand the pros and cons of this approach if you elect to try it.
In vitro fertilization (IVF) is the most aggressive option, but often indicated if other treatments fail. These days, we have many mechanisms to prevent IVF stimulation from causing severe ovarian hyperstimulation syndrome (OHSS). As OHSS is caused by the high estrogen levels in women undergoing IVF with high follicle numbers, PCOS is a risk factor. Talk to your physician about their plan to reduce your risk, by using approaches such as: an antagonist protocol, low-dose or dual triggers, embryo freezing, and/or adjuvant metformin treatment.
Wow. Lots of information to digest, right? As I said, there are many things I love about this document. I truly think that it hits the high notes on the critical aspects we need to be considering, and takes a patient-oriented approach to emphasizing quality of life, and how we can do better in empowering women with PCOS. One of the biggest limitations to these guidelines, however, is that much more research is needed. Overall, the scientific evidence behind these recommendations is categorized as low-to-moderate, and there is insufficient data on many complementary and alternative approaches, including inositol therapy, acupuncture and herbal approaches. This lack of data means that we cannot confidently conclude whether these therapies work, and it is my belief that you should discuss them with your physician. I certainly elect to utilize all of these in various circumstances, and it is a matter of discussing in detail what we do and do not know, and the reasons we may wish to give them a try anyways!
So, there we have it. A very long, dense new set of guidelines digested into a form that I hope piques your interest enough to check it out! You may be overwhelmed by some of the scientific language, but I think the descriptions make it approachable to where it can help inform the questions you may want to ask of your healthcare provider. As a member of the Patient Education Committee for the Androgen Excess & PCOS Society, it is my fervent hope that this post helps you understand the value (and limitations) of this new document. Also, know that more and more patient-oriented materials are forthcoming, and some great ones are already available here through Monash University! I believe that the goal is to go from feeling overwhelmed to feeling empowered to create the lifestyle that brings you to your best, healthiest self – and to remember that if your PCOS diagnosis helps you become that woman sooner, it may be a blessing in disguise! Good luck – you can do it!
Dr. Kudesia is a board-certified Reproductive Endocrinology and Infertility specialist, practicing at CCRM Houston in Houston, Texas. She joined CCRM Houston (formerly Houston IVF) in 2018 after practicing in New York City, where she was named a “New York Super Doctors Rising Star” in 2016 and 2017. She is the Site Director for CCRM Houston – Sugar Land, and Director of Patient Education.
After completing her Baccalaureate degree in Biology & Medicine magna cum laude from Brown University, she received her M.D. with honors from the Duke University School of Medicine, where she was selected into a clinical research training program co-sponsored by the National Institutes of Health. Her residency training in Obstetrics & Gynecology at the New York Hospital-Weill Cornell Medical Center was followed by subspecialty training in Reproductive Endocrinology and Infertility (REI) at the Albert Einstein College of Medicine-Montefiore Medical Center, alongside a Masters’ of Science degree in Clinical Research Methods. She subsequently served as a Clinical Assistant Professor at the Icahn School of Medicine at Mount Sinai, as well as the Research Rotational Director for the REI fellowship, and Medical Director of the Brooklyn office of the Reproductive Medicine Associates of New York.
Dr. Kudesia is a Fellow of the American College of Obstetricians and Gynecologists, and an active member of the American Society for Reproductive Medicine (ASRM), Society for Reproductive Endocrinology and Infertility, Androgen Excess & Polycystic Ovary Syndrome Society, and American Medical Association (AMA). She has served in multiple local and national leadership roles in organized medicine, including her current positions as Secretary of the ASRM Women’s Council Executive Board and the ASRM delegate to the AMA Young Physicians’ Section.
Dr. Kudesia has also presented scientific research at national and international conferences, and has received multiple awards and grants for her work. She has published peer-reviewed articles and book chapters, including in leading journals such as Fertility & Sterility and the American Journal of Obstetrics & Gynecology, as well as editing a theme issue on reproductive medicine for the American Medical Association Journal of Ethics. Her current areas of focus include improving in vitro fertilization cycle prognosis, polycystic ovary syndrome, LGBT fertility, and fertility awareness, counseling, and access to care. She actively promotes women’s health and wellness on social media via Twitter, Facebook, and Instagram.
Wow! This is really huge! Thank you for all the work that has been done in putting together these guidelines. I can only imagine what a difference this will make in helping women with PCOS.