Affecting about 1 in 8 women worldwide, PMOS occurs when the ovaries, and in some cases the adrenal glands, produce too many androgens (sex hormones like testosterone that are usually higher in men).
Getting this message out to the public will take some work, but is important: Persistent misconceptions about the condition, including one tied to the word “polycystic” in its former name, have led to missed opportunities for diagnosis and patient fear and frustration.
Here are 10 common myths about PCOS, and the science-backed facts about PMOS.
1. Myth: Ovarian Cysts Are the Top Issue With PMOS
The word “polycystic” in the name made PCOS sound like it was mainly about having many ovarian cysts. “Polyendocrine” shifts the focus to what experts now say is more central: broader hormone and metabolic changes.
“The previous name focused on just one aspect — reproductive,” says Anuja Dokras, MD, PhD, a professor of women’s health and director of the Penn PCOS Center at the Perelman School of Medicine in Philadelphia. “With the advances in understanding this condition, the new name is more comprehensive.”
“The cyst language also caused unnecessary worry,” says Heather G. Huddleston, MD, a reproductive endocrinology and infertility specialist and director of the PCOS Clinic at UCSF Health in San Francisco. Many people heard “cyst” and assumed something abnormal in the ovary might cause pain, rupture, or need treatment, she says.
“In fact, the PCOS/PMOS ovary does not contain ‘cysts’ per se, but rather small immature follicles, which are normal structures within the ovary, although many women with PCOS/PMOS have more follicles than average,” says Dr. Huddleston.
That is why the new name matters. It doesn’t remove the ovarian part of the condition — it just makes clear that there are other factors involved.
2. Myth: PMOS Is Only a Period Problem
Irregular periods are common reasons people discover they may have PMOS. But the condition can have impacts well beyond the menstrual cycle.
While the old name made PMOS sound like a gynecologic condition first and foremost, the hormonal imbalance that is a key part of this disorder can disrupt metabolic functions, too, says Huddleston, which can lead to insulin resistance, high cholesterol, and increased fat accumulation in the midsection.
3. Myth: If Your Periods Are Irregular, You Must Have PMOS
There are many causes of an irregular cycle, and PMOS is only one of them.
The lesson: If your cycle is less than 22 days or greater than 34 days long, talk to your obstetrician-gynecologist. Your doctor can help you identify the cause through an exam and by running additional tests as needed (like a blood test to look at thyroid levels).
4. Myth: PMOS Is Basically the Same as Endometriosis
PMOS and endometriosis have a few things in common: irregular periods, ovarian follicles (in PMOS) or cysts and difficulty getting pregnant. But the root causes of these conditions, and how they impact the body, are very different.
Endometriosis happens when tissue similar to the lining of the uterus grows outside the uterus, leading to pelvic pain, pain with sex and, in some cases, ovarian endometriomas, sometimes called “chocolate cysts.” These fluid-filled, noncancerous sacs form within the ovaries and can frequently cause chronic pain and infertility.
5. Myth: You’ll Definitely Know if You Have PMOS
While PMOS can be an obvious issue for some people, too many patients don’t recognize the symptoms, and too many doctors miss or misdiagnose it.
“We know that many women with PMOS spend years trying to be diagnosed and treated early in their life,” says Huddleston.
“Many clinicians are also confused or unclear about the diagnostic criteria, resulting in women being bounced around to different doctors or being told that they have something else.”
The parameters for what constitutes PMOS, called the Rotterdam criteria, are clear — but more healthcare providers, not just gynecologists, need to be aware of them, says Dr. Dokras.
The Rotterdam criteria for adults generally means a person can be diagnosed after other possible causes are ruled out and they have at least two of these three features:
- Irregular or infrequent ovulation, often showing up as irregular periods.
- High androgen levels, either seen on bloodwork or through symptoms such as acne, excess facial or body hair, or scalp hair thinning.
- Polycystic-appearing ovaries on ultrasound — or, in updated guidance, elevated anti-Müllerian hormone (AMH) levels as another marker in adults. In women of childbearing age, this hormone relates to how many eggs are left in the ovaries.
In individuals aged 10 to 19, doctors diagnose PMOS differently. Because puberty can cause irregular periods and ovaries can naturally have many small follicles during adolescence, doctors generally look for both irregular or infrequent ovulation and signs of higher androgen levels before making the diagnosis.
But it’s important to underscore that PMOS symptoms vary significantly from person to person. Mild symptoms, in particular, are easy for a physician to overlook or mistake for something else.
6. Myth: Everyone With PMOS Has Excess Hair Growth or Acne
High androgen levels can cause symptoms such as acne, excess facial or body hair, and scalp hair thinning. But PMOS does not look the same in everyone.
PMOS can cause excess hair growth, called hirsutism, in places such as the upper lip, chin, chest, or abdomen, but not in everyone. How noticeable it is can also vary from person to person.
While the majority of women with PMOS have acne, it’s estimated that about 1 in 4 don’t.
7. Myth: PMOS Means You Won’t Be Able to Get Pregnant
PMOS can pose fertility challenges, but it does not mean pregnancy is impossible.
“With PMOS, many women ovulate infrequently or not at all,” Huddleston says. “This means that the woman is releasing an egg infrequently, which means your period comes infrequently and it is difficult to conceive.”
But PMOS-related infertility is often treatable. “Fortunately, there are many effective treatments to help women with PCOS ovulate and conceive, and we consider this to be a very treatable form of infertility,” she says.
Before women with PMOS try to conceive, they should work with their providers to make sure cardiometabolic issues and any mental health issues are addressed, says Dokras. “These comorbidities can impact pregnancy outcomes,” she says.
8. Myth: PMOS Only Affects People With Obesity
PMOS can occur across body sizes, and weight is not a reliable way to tell who has the condition.
While weight management is part of care, for people with PMOS it can also be more complicated than generic advice to eat less and move more. “Insulin resistance is present for the majority of women with PCOS. That can make it easy to gain weight and harder to lose weight,” says Huddleston.
Dokras says that weight management is challenging for everyone. “And in women with PMOS, there may be other barriers such as depression, anxiety, body image distress, and stigma that collectively impact weight management efforts,” she says.
9. Myth: PMOS Is a Grim Life Sentence
“PMOS can be well managed, especially if it is diagnosed early,” Dokras says.
First-line treatments depend on each person’s symptoms and include lifestyle management, hormonal medications, and insulin-sensitizing medications, she says.
PMOS really benefits from a multidisciplinary approach, says Huddleston. “The specific treatment really depends on the specific concerns and goals of the patient,” she says.
For someone trying to conceive, treatment may focus on helping ovulation happen more regularly. For someone bothered by acne, hair growth, irregular bleeding, weight gain, or insulin resistance, the plan may look different.
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