The most common hormone disorder in women of reproductive age is something most people have never heard of: polycystic ovary syndrome (PCOS).
PCOS affects up to 15% women worldwide, which makes it more common than diabetes. Despite this, throughout the world PCOS remains an under-diagnosed and under-managed condition that can have serious symptoms, including sub-fertility and infertility.
PCOS is especially difficult to diagnose and manage because it touches on so many different factors (e.g. nutrition, exercise, dermatology, mental health, etc.). The healthcare system isn't traditionally setup to deliver a multidisciplinary approach, but USCF is trying to change that. The University of California San Francisco's Multidisciplinary PCOS Clinic, which is part of the UCSF National Center of Excellence in Women's Health, is a specialist clinic with an integrated approach to treating the condition.
We spoke to Dr. Jerrine Morris, Clinical Fellow in Reproductive Endocrinology & Infertility at UCSF and part of the groundbreaking clinic, to shine some light on the condition, explain her treatment approach and reveal what the latest scientific developments mean for women trying to manage it.
Firstly, what actually is PCOS and what causes it?
Polycystic ovary syndrome (PCOS) is a complex condition with reproductive, metabolic, dermatologic and psychological features.
Although PCOS does tend to cluster in families, the specific genetic contribution is unclear. Additionally, the contributions of environmental factors to the development of the disorder are even less well studied but appear important. While at this point, we cannot determine the exact cause of PCOS, we know some people are more susceptible to developing this syndrome.
When does PCOS usually start?
While it is likely PCOS begins in adolescence, it may be more readily diagnosable in adulthood. This is because some of the features of PCOS (ovaries with lots of follicles, larger ovarian volume, menstrual dysfunction and acne) can also be found in the normal transition of puberty. In fact, ovaries with lots of follicles can be seen in about 25% of adolescents and menstrual irregularity can be seen in over 50% of adolescents 3 years after they get their first period.
On the other hand, PCOS is a diagnosis of exclusion and up to 50% of women go undiagnosed, so estimating when PCOS truly starts is challenging and likely differs among those affected.
Who can be affected?
PCOS is the most common endocrine disorder in women of reproductive age and is fairly consistently seen across different racial and ethnic groups.
How do you know if you have PCOS? (What are the symptoms?)
Symptoms of PCOS can include the presence of acne, excessive hair growth of dark or coarse hair on the face, chest, and back, as well as menstrual irregularity including less than 8 cycles per year.
How do you get diagnosed?
The clinical diagnosis of PCOS can be challenging.
Even if a woman presents as having PCOS at a younger age, it's possible that as she gets older her menstrual cycle may become regular, she may experience a decrease in hyperandrogenism (an excess of male sex hormones like testosterone), and an ultrasound might even show a decrease in the number of follicles in the ovaries.
Additionally, as we refine the diagnosis of PCOS, women who were diagnosed may no longer meet criteria depending on which symptoms were used to make the initial diagnosis. PCOS is also a diagnosis of exclusion which means a doctor should work up other causes for symptoms (irregular menstrual cycles and hyperandrogenism) including thyroid dysfunction, high prolactin levels and adrenal problems, before the diagnosis of PCOS can be given.
For example, if someone has two of the three criteria below, a doctor is likely to diagnose the patient with PCOS.
Menstrual irregularity (<8 cycles per year when not on medication)
High androgens in the blood or clinical signs of high androgens (like hair growth)
20 or more follicles seen on one ovary on ultrasound
I believe it is important that the focus for providers be to treat someone’s symptoms rather than merely focusing on obtaining a diagnosis.
How is PCOS treated, can you take medication for it?
As mentioned above, PCOS is a syndrome made of a constellation of symptoms.
Unlike high blood pressure where one or more pills can be prescribed to bring down one’s blood pressure, treating PCOS is complex and really should be individualized to meet the person’s needs.
Below are some of the recommendations based on the symptoms that a woman with PCOS might experience.
If this is an issue, you will need a medication to protect the lining of the uterus. This can be either a hormonal pill or intrauterine device.
Acne and unwanted hair growth
The hormonal pill, along with a medication called Spironolactone, are both helpful in decreasing acne and unwanted hair growth. There are other topical regimens for acne that one can try under the guidance of a dermatologist. For hair growth, hair removal systems tend to be pretty effective in conjunction with medication.
Hair Loss related to high androgens
Rogaine 5% applied twice per day to problem areas tends to be the best option.
Important risk factors for women with PCOS
All women with PCOS should be screened for risk factors for heart disease including diabetes and high cholesterol with frequency of screenings individualized.
What happens if PCOS is left untreated? Can it be dangerous?
This is a great question, and it depends. There is a known 2 to 6-fold increased risk of endometrial (uterine) cancer in women with PCOS. When a woman has irregular menstrual cycles, she is more likely to have unopposed estrogen to the lining of the uterus which can lead to the development of precancerous or cancerous cells.
Other than endometrial cancer, women with PCOS are at increased risk for diabetes and abnormal blood lipids regardless of BMI. Screening for impaired glucose tolerance in general and prior to pregnancy is important. Screening with fasting lipid levels is also important.
Why can PCOS impact fertility?
As mentioned previously, many women with PCOS do not ovulate regularly. If a woman does not ovulate, she does not release an egg, which means she cannot get pregnant. That being said, most women with PCOS that experience menstrual irregularities will still ovulate occasionally so in the months that ovulation occurs, pregnancy is still possible. For that reason, doctors recommend using contraception if pregnancy is not desired.
If you are actively trying to conceive, we often recommend to try for three months before seeking the expert advice of a medical practitioner.
If challenges occur, a gynecologist or fertility specialist can prescribe medication that causes ovulation (e.g. Clomid or Letrozole). These medications are safe and typically well tolerated. It’s important to understand that once a woman is ovulating regularly, the chances of pregnancy are similar to someone around the same age in the general population who does not have PCOS.
Do you have some tips for managing PCOS naturally?
The greatest way to manage PCOS naturally is through lifestyle centered around well-established healthy behaviors.
These include avoidance of cigarette smoking, engaging in physical activity at least 30 minutes per day 5 times per week, and eating a balanced diet. Muscle building exercise seems to be particularly important for women with PCOS and helps to lower insulin levels.
Additionally, it is important to see a doctor if your periods are irregular and to be up to date with recommended general health screenings.
Are there any novel developments or treatments in the pipeline?
The future of PCOS is really focused on better understanding what PCOS is and the contributions of genetics and environment on its development. The criteria used to diagnose PCOS has continued to evolve since described in 1935.
As we learn more about the syndrome and better classify women based on their symptoms, we can better recommend future screenings and treatment based on this information. Furthermore, as we evaluate the unique yet interrelated genetic and environmental contributions to PCOS, we will hopefully be able to better predict who will have PCOS, how better to treat it, and eventually, how to prevent it.
Tell us about your approach to treating PCOS
At UCSF, we approach PCOS from a multidisciplinary approach as we understand the complexity in diagnosing and treating this syndrome.
Our patients see a team of specialists in reproductive endocrinology, dermatology, nutrition, and psychology. The team will work together with each patient to create an individualized treatment plan which takes into account each woman’s needs and circumstances. This clinic also provides a plan for the patient and her general doctor to follow long-term. Lastly, women seen in our clinic are also offered the opportunity to participate in ground-breaking research to understand PCOS and how to best treat it.
What would you say to someone feeling frustrated that her symptoms haven’t been taken seriously, or is wondering how to seek better treatment?
My greatest recommendations for someone feeling frustrated by her symptoms or her treatments are:
1. Don’t give up and be persistent if you do not feel your needs are being met
2. Think critically about your ultimate goals since treatment options depend largely on each individuals’ needs, and finally:
3. Ask your providers for locations to obtain evidence-based information which will arm you with the knowledge to advocate for yourself but won’t steer you in a misleading direction.
Dr. Jerrine Morris is Clinical Fellow, Reproductive Endocrinology and Infertility at the University of California, San Francisco and Vice Chair, Health Disparities Special Interest Group American Society for Reproductive Medicine.
The UCSF Multidisciplinary PCOS Clinic is located in San Francisco, California.