PCOS: A Fertility Specialist Answers 11 Important Questions
Novalynn Fertility CEO and Emmy-winning journalist Katie Krause Mork emailed questions about Polycystic Ovary Syndrome to Dr. Sharon Moayeri, MD, MPH, MS, FACOG. She is an expert fertility specialist and gynecologist with over 15 years of experience. You can read more about her and her practice in her bio below.
PCOS affects roughly five to six million women in the U.S. but so many don’t know what it is. Can you explain in the easiest terms what Polycystic Ovary Syndrome is?
Polycystic ovary syndrome (PCOS) is a hormonal imbalance of reproductive-aged women associated with increased risk for metabolic and reproductive health issues. There is no single defining test or feature, but a hallmark characteristic is elevated androgens - “male-dominant” hormones. These hormones are produced by the ovaries and adrenal glands, and include (in order of most commonly elevated): DHEA-sulfate, free testosterone, and total testosterone.
All people have androgens, but levels are much higher in those designated-males-at-birth (DMAB) relative to those designated-female-at-birth (DFAB). Among women with PCOS, androgens are slightly elevated compared to the average levels found in those DFAB, but not as high as levels in those DMAB. This elevation is associated with certain health outcomes.
There are so many misconceptions about PCOS. Does anything cause it?
PCOS is a multifactorial condition linked to various genes and its expression is affected by diet, exercise, weight, environment, and age. PCOS runs in families, with approximately 30-40% of mothers and sisters sharing the risk. It is also observed that women with PCOS have male family members with increased risk for heart disease, diabetes, and other metabolic disorders.
How can PCOS affect fertility and a woman’s ability to get pregnant? Can a woman with PCOS conceive naturally and carry the pregnancy to term?
Nearly 80% of women with PCOS have irregular menstrual cycles, rarely, or never ovulate naturally. In many women with PCOS who ovulate spontaneously, but maybe less frequently, pregnancy can occur naturally and often be carried to term.
Among those women who are anovulatory (don’t ovulate naturally), ovulation-inducing medications are needed to conceive. Additionally, due to unopposed estrogen exposure, anovulatory women with PCOS have increased risk of uterine lining changes, including endometrial thickening, hyperplasia, and gland overgrowth (called polyps). All can lead to impaired fertility or increased miscarriage.
Ultimately, if left untreated, endometrial changes can lead to uterine cancer requiring hysterectomy and possibly sterility. Rarely, among women with poorly controlled metabolic disease related to PCOS, such as obesity or diabetes, there may be lower egg quality or increased risk for miscarriage, birth defects, or birth complications.
When should a woman with PCOS consider seeing a fertility specialist?
I find there is a lot of misinformation about PCOS and many have difficulty wrapping their head around what PCOS is because it can present so differently and it can change with age, weight, and lifestyle.
It’s worth seeing a fertility specialist when you are ready to grow your family and if you feel that you are running into mixed messaging about your reproductive challenges, especially if you have any menstrual irregularities or notice symptoms related to androgen excess, such as acne or stubborn weight-gain, especially if you don’t otherwise fit the PCOS stereotype.
Are women with PCOS at risk of any other health issues? If so, what are they and what can be done?
I describe PCOS to my patients as a “risk-factor” - similar to knowing they have a family history of heart disease or diabetes - and that risk can change throughout a woman’s lifetime, just like other risks can change with age. It’s important to identify such risks early in order to screen for and manage them. Women identified with PCOS may have to make more significant lifestyle changes to mitigate its health effects and the sooner they do so, the less impact on their overall health in the long run.
Excess androgens increase risks for endocrine disorders, such as diabetes, insulin resistance, and high cholesterol. Menstrual irregularities may lead to over-thickening of the uterine lining as measured by pelvic ultrasound. Sometimes, this needs to be sampled by biopsy to rule out abnormalities, such as endometrial hyperplasia, polyps, or uterine cancer.
Do women with PCOS have noticeable symptoms? If so, what are they and what do they feel like?
Androgen excess can lead to observable complaints including: menstrual cycles irregularities, weight gain - especially abdominal and upper body, acne, skin darkening (groin, under arms, and neck), and excess hair growth on the face and body.
A high AMH level can be an indication of PCOS. Are there specific levels a doctor looks for? What else does a fertility specialist test for in order to diagnose PCOS?
AMH is not used as a diagnostic criteria for PCOS, but its elevation is a soft marker for PCOS. It may be notably higher in women with PCOS (greater than 4ng/mL), as women with PCOS have a higher resting egg reserve due to their underlying ovulatory disorder.
However, just as all women’s ovarian reserve declines with age, so too does ovarian reserve decline in women with PCOS, so using AMH or even polycystic ovarian morphology on ultrasound to diagnose PCOS are imperfect tools. Age changes the characteristics of and presentation of PCOS, but it doesn’t change the underlying risk of someone having PCOS.
To diagnose PCOS, we look for patients' complaints of either androgen excess, such as acne or excess hair plus menstrual irregularities. In addition, we assess their blood for evidence of excess androgen hormone levels - DHEA-S, free or total testosterone. Lastly, we do pelvic imaging to view the ovaries for evidence of excess resting antral follicles, though this is the less consistent feature. Finally, we make sure to eliminate any other causes (ie., medications) or conditions that could masquerade as PCOS, such as thyroid disease, or other pituitary or ovulatory conditions.
We really want people to know how much hope there is after being diagnosed with PCOS. What can you say about that?
PCOS affects nearly 20% of the female population - with an ethnic predilection for Latinas and south Asians. Understanding it as a risk factor rather than a disease, similar to other hereditary risk factors, like heart disease or diabetes, allows people to manage their expectations and gain insight to the challenges they may face as well as empowers them to do things they can to minimize their risks through lifestyle changes, such as diet, exercise, and keeping their weight down. Additionally, identifying with so many women who are affected but have successful, healthy pregnancies is reassuring.
How is PCOS best treated? Are there medications or lifestyle changes that can help?
PCOS is treated based on each patient's goals - whether one is focused primarily on reproduction vs health maintenance.
For those focused on health maintenance and not intending to conceive - annual health screening, including diabetes and cholesterol, as well as endometrial screening for those with irregular menses is the mainstay.
Prevention by advocating for a healthy lifestyle is the primary course of action. If pre-diabetes, diabetes, or dyslipidemia is detected and attempted ketogenic plant-based diet and exercise isn’t sufficient, then medications to manage, such as metformin or niacin, may be indicated.
If cycles are irregular, then regulating cycles with hormone replacement, such as birth control pills or other hormone replacement may be indicated to protect the endometrial lining from over-exposure to estrogen.
If the intent is to conceive in women who are anovulatory, then ovulation-inducing medications, such as femara/letrozole, clomid/clomiphene citrate, or gonadotropins may be prescribed. Alternatively, some may consider in vitro fertilization (IVF).
A friend of mine regularly experiences extreme pain with PCOS. She was told she needs a hysterectomy. Why would a doctor recommend this?
Though rare in women who receive adequate healthcare services, women with PCOS who have menstrual irregularities may have uterine lining thickening as a result of unopposed estrogen exposure. This can result in painful periods or sometimes pain from abnormalities developing in the uterus. If left untreated over time, it may develop into endometrial hyperplasia and eventual uterine cancer that requires surgical intervention, such as a hysterectomy.
Is a woman diagnosed with PCOS a good candidate for in vitro fertilization (IVF)? How can having PCOS affect the outcome?
Women with PCOS often have a great response to IVF, but have unique challenges including, discordant egg development, more risk of severe ovarian hyperstimulation (OHSS), and poorer egg quality. Therefore, it is important that women with PCOS are managed uniquely with their IVF protocol.
Additionally, it is important to consider frozen embryo transfers to avoid replacement of embryos in a stimulated cycle which is likely to result in reduced implantation; and increased hyperstimulation risk.
Furthermore, women with PCOS should be carefully managed for prediabetes and diabetes preconception.
Lastly, women with PCOS are more likely to have uterine cavity filling defects, such as endometrial thickening and polyps, that require more careful management and evaluation prior to embryo transfer.
About Dr. Sharon Moayeri
Sharon Moayeri, MD, MPH, MS, FACOG, is an expert fertility specialist and gynecologist with over 15 years of experience. As the founder and medical director of OC Fertility® in Newport Beach, California, she is board certified in both obstetrics and gynecology and reproductive endocrinology and infertility by the American Board of Obstetrics and Gynecology.
She received her Bachelor of Science in biological science and Bachelor of Arts in cognitive science from the University of California, Irvine (UCI) before heading to the University of California, Los Angeles (UCLA) for her Master of Public Health in health policy. She completed her Doctor of Medicine at the UCI School of Medicine, where she also finished her internship and residency in obstetrics and gynecology, serving as administrative chief resident.
She then completed her Agency for Health Research and Quality (AHRQ) and National Institutes of Health (NIH) post-doctoral research fellowship in health services at the prestigious Stanford University Center for Health Research and Policy in Stanford, California. She also finished her fellowship in reproductive endocrinology and infertility at the Stanford University Department of Obstetrics and Gynecology.
In 2009, she founded OC Fertility®, a culmination of her goals to provide personalized, patient-focused fertility services in my hometown. All treatments use the most cutting-edge technologies while creating a comfortable and communicative environment.
She is a reviewer for the renowned American Journal of Obstetrics and Gynecology (AJOG) and Fertility and Sterility®, and has given lectures and been published multiple times on topics like blastocyst IVF embryo transfer, oncofertility, CCS/PGS, endometriosis, and affordable fertility treatments. She is a member of multiple organizations, including the American Society of Reproductive Medicine (ASRM), Society for Assisted Reproductive Technologies (SART), Society for Reproductive Endocrinology and Infertility (SREI), Alpha Omega Alpha National Honor Medical Society (AOA), the American Association of Gynecologic Laparoscopists (AAGL), and a fellow of the American College of Obstetrics and Gynecology.
Please visit https://www.ocfertility.com to learn more.