Why Didn't I Know That I Had PCOS Until Adulthood?

Why This Endocrine Disorder Often Isn't Diagnosed Until Your 20s or 30s

Woman receiving bad news from doctor
Getty Images/PhotoAlto/Frederic Cirou

Polycystic ovarian syndrome, or PCOS, is an endocrine disorder that affects the hormonal system. Women with PCOS tend to have higher-than-normal levels of androgens (male hormones like testosterone) circulating in their body, leading to a wide range of symptoms.

Many women aren’t aware that they have the syndrome until they are trying to get pregnant in their 20s or 30s. This can be confusing and many women wonder why this wasn’t found earlier in their life.

Signs Often Go Undetected

The most common symptoms of PCOS include irregular or absent periods, acne, weight gain, and irregular hair growth on the face, chest, or body. In addition, many women with PCOS have many small cysts on their ovaries, causing a characteristic polycystic appearance on an ultrasound. This can look like a string of pearls surrounding the ovaries.

Diagnosing PCOS can be difficult since there isn't a specific test that can be performed. Each woman’s experience of PCOS is unique because no two women have the exact same symptoms.

Some women have the physical signs of PCOS like hair growth, acne, and obesity, but they get regular periods. Other women are extremely lean but have irregular periods and ovaries that appear polycystic on an ultrasound. The one common feature is irregular or absent periods.

Symptoms Mimic Those Experienced During Adolescence

The symptoms that are associated with PCOS are often mistaken for those that are experienced during adolescence.

Most physicians would consider irregular periods, acne, and weight gain to be normal signs of adolescence and wouldn’t diagnose PCOS until later in life.

Most women, in fact, wouldn’t think that anything was abnormal if they were having problems with acne or irregular periods late into their teens because a majority of teens have experienced these issues at some point during their adolescent years.

Birth Control Conceals PCOS

Many young women start hormonal birth control in their late teens and early 20s, such as the Pill, the NuvaRing, the patch, ​and the Depo Provera injection. While they differ in the way that the hormones are deposited into the body, all of these options release small amounts of hormones like estrogen and progesterone.

Hormonal birth control prevents ovulation and keeps cycles regular by maintaining elevated blood levels of estrogen and progesterone. Hormones also keep the cervical mucus thick and tacky, stopping any sperm from reaching the fallopian tubes.

When the Condition Is Usually Diagnosed

Women with PCOS who are not on birth control tend to have irregular menstrual cycles, meaning that they are not ovulating regularly. This can lead to difficulty becoming pregnant.

Since it’s not unusual to have irregular periods and acne in the months following stopping your hormonal birth control, the symptoms of PCOS may still not be apparent at this point. This is especially true because most doctors recommend waiting at least a few months before trying to get pregnant.

It’s not a coincidence that many women are diagnosed with PCOS a few months after they come off their hormonal birth control as they are trying to get pregnant.

The absence of these hormones tends to make the symptoms more apparent, as women become more aware of their irregular menstrual cycles.

Fortunately, there are a number of treatments and lifestyle changes that can help women manage PCOS.

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