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As one of the leading causes of infertility, polycystic ovary syndrome (PCOS) is regularly found at the center of reproductive health discussions.
According to the World Health Organization, PCOS is a common hormonal condition that affects approximately 8-13% of reproductive-aged women (although up to 70% of affected women remain undiagnosed worldwide). Specifically, PCOS is a metabolic disorder that occurs when the ovaries and adrenal glands produce a surplus of androgens (aka sex hormones).
PCOS can cause hormonal imbalances, irregular periods, excess androgen levels — which can present either as acne or excess hair growth on the face, chest, or abdomen — and cysts in the ovaries. In short, PCOS is no fun.
How do I know if I have PCOS?
Physicians commonly use the Rotterdam criteria to diagnose PCOS, with the patient meeting “at least two of the following three criteria to rule in a PCOS diagnosis,” explains Elizabeth Dilday, M.D., a reproductive endocrinologist and infertility specialist with CCRM Fertility in Newport Beach, California: “1. Ovulatory dysfunction (which presents as menstrual periods that are irregular and typically longer than 35 days apart, or menstrual periods that are absent altogether). 2. Clinical or biochemical hyperandrogenism (aka acne or excess hair growth), or laboratory evidence of elevated androgens). 3. Polycystic ovarian morphology seen on pelvic imaging studies.”
While there are recommended fertility treatments and lifestyle alterations (diet, exercise, and stress reduction), PCOS is, unfortunately, a chronic condition, and there is no cure. “The exact cause of PCOS is not clear at this time,” says Dr. Dilday, “but genome-wide studies have identified some genes that may play a role in its development and predispose one to the disease.”
One question pertaining to PCOS, however, is subject to debate, and that’s whether or not it’s an autoimmune disease. This debate arises because certain PCOS symptoms, like absent or irregular periods, present as similar to those connected to autoimmune diseases. In addition, autoimmune diseases are more common among women diagnosed with PCOS. For those of us who aren’t medical professionals, this topic can get confusing very quickly, so we went straight to the experts for the answers.
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Is PCOS an autoimmune disease?
Janet Choi, M.D., a reproductive endocrinologist and Chief Medical Officer for Progyny, confirms to Rescripted that PCOS is not an autoimmune disease. “An autoimmune disease is a condition where, in an effort to protect them from bacterial, viral, and other infections, a person’s own immune system ‘attacks’ itself,” she explains. This is not what happens with PCOS. Dr. Choi emphasizes that this condition doesn’t impact the immune system at all: “Polycystic ovarian syndrome is a condition where the ovaries produce an abnormal amount of androgen and is usually caused by environmental factors or a person’s genetics.”
Why do some people assume PCOS is an autoimmune disease?
One reason is the guilty by association argument: “Women with PCOS do have a higher incidence of autoimmune diseases, such as lupus and Hashimoto’s thyroiditis,” says Laura Meyer, M.D., a reproductive endocrinologist with Illume Fertility in Connecticut. She also acknowledges that “both PCOS and autoimmune diseases can be associated with increased markers of inflammation, which has raised the question of a link between the two.”
Dr. Choi suspects that common symptoms are the culprit here, in particular, absent or irregular periods. “I hypothesize that [the assumption that PCOS is an autoimmune disease] could be because many individuals with PCOS present with absent or irregular periods, which are common symptoms of some autoimmune conditions, like thyroid disease,” she says. Another source of confusion is if a patient has premature ovarian failure, which is “when a person stops having periods before the age of 40 due to an early and rapid decline of their egg supply.” Dr. Choi says this “can sometimes be mistaken for an autoimmune disease such as celiac disease and type 1 diabetes because these diseases can affect a person’s ovaries and adrenal glands.”
The similarities don’t stop there, though. Dr. Choi warns that “when a person has an autoimmune disease that is either uncontrolled or unstable, it is highly possible that they can develop irregular/absent periods and experience issues with their fertility.” This can cause even further confusion because “these symptoms are also common in women who have PCOS.”
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How do I manage my condition if I've been diagnosed with PCOS?
Even though PCOS isn’t an autoimmune disease, it is a chronic condition, which means it’s crucial you speak to your doctor about a plan for symptom control and management. “It is important to know about the health risks of PCOS, such as diabetes, high blood pressure, high cholesterol, sleep apnea, depression/anxiety, and endometrial cancer, and to be screened for those conditions over time,” says Dr. Meyer. She recommends that patients discuss dietary and lifestyle changes with their medical providers to both “lower the risk of associated health conditions and complications,” as well as ease PCOS symptoms.
If you’ve been diagnosed with PCOS and are not trying to conceive, Dr. Meyer says common treatments include taking birth control pills “to protect and regularly shed the uterine lining, and to help reduce bothersome androgen hormone symptoms.”
As for patients with PCOS who are TTC? “If the woman’s periods are irregular, she should talk to her gynecologist or a reproductive endocrinologist about how to induce ovulation,” advises Dr. Meyer. She says these women “are often prescribed medication to cause them to ovulate more regularly.”
Finally, Dr. Meyer recommends that patients with PCOS not go more than three months without having a period, “in order to prevent the abnormalities from developing in the uterine lining cells.” This can be managed via medication, which can induce a period if necessary.
Sarene Leeds holds an M.S. in Professional Writing from NYU, and is a seasoned journalist, having written and reported on subjects ranging from TV and pop culture to health, wellness, and parenting over the course of her career. Her work has appeared in Rolling Stone, The Wall Street Journal, Vulture, SheKnows, and numerous other outlets. A staunch mental health advocate, Sarene also hosts the podcast “Emotional Abuse Is Real.” Visit her website here, or follow her on Instagram or Twitter.