Polycystic Ovarian Syndrome (PCOS) is thought to affect about 10% of the female population. But, unless you have it or it runs in your family, it’s probably the most common syndrome you’ve never heard of… and it could affect your teen. A visit to the gynecologist or endocrinologist may result in a PCOS diagnosis. Here’s some information to be armed with right out of the gate.
Helpful Info for When You Get a PCOS Diagnosis
PCOS doesn’t raise its head until a female hits puberty (something which is happening earlier and earlier). A 2018 study in Nature Medicine says “How PCOS is passed on from one generation to the next is not clear, but it may be a developmental condition. Most women with PCOS exhibit higher levels of circulating luteinizing hormone, suggestive of heightened gonadotropin-releasing hormone (GnRH) release, and anti-Müllerian hormone (AMH) as compared to healthy women.”
These hormone levels create a unique situation: women with PCOS ovulate much less, possess more of the hormone androgen, and end up with a variety of symptoms. These can include pelvic pain, irregular periods, migraines, hirsutism (hairiness), weight gain and depression. Infertility later can be an issue.
Just what a teen girl needs.
Symptoms to Watch For
It’s hard enough to just discuss the basics when your teen gets her period. Having to make the jump from what are ordinary signs of menstruation to the extreme ones of PCOS makes it even more challenging because a young girl might think that those extreme symptoms are “normal.”
Nicole (not her real name), a 17-year-old, developed early and struggled with parsing PCOS from ordinary periods.
“I got my period when I was 11, and I thought that was it, I was now a woman. It was extremely irregular, but I thought nothing of it, considering periods are ‘supposed’ to be irregular for the first two years,” Nicole tells Parentology. “But two years passed, and they were still irregular. Then another year, then another year, until I noticed that whenever I did get my period, they were very heavy and usually accompanied by migraines, vomiting and lots of pelvic pain. These symptoms were so bad a lot of the time I was bedridden.”
Finally, Nicole did her own research.
“When I entered my freshman year of high school, I did some research and came to the conclusion that I needed to go on birth control, as I found out that it could help with regulating my period. I told my mom, and immediately she asked whether I actually needed it for this purpose, or if I was sexually active and trying to hide it,” Nicole says. “At that time, I wasn’t sexually active and felt so frustrated, thinking, “Can you not see how crippling my periods are to me, whenever I do get them?!” However, I’m extremely close to my mom and explained the situation again, and she understood.”
Getting a PCOS Diagnosis
Inevitably, the path from irregular periods, pain, and other symptoms lead to a doctor’s office. And while either a primary care physician or a specialist can diagnose PCOS, a recent study indicated many women and girls feel unheard and frustrated.
This 2018 survey, published in the Journal of Endocrine Society, found that “women with polycystic ovary syndrome are more likely to trust a specialist vs. a primary care provider to treat their PCOS-related concerns and report dissatisfaction overall with the level of emotional support they receive from their providers.”
So, if PCOS is suspected, you might want to usher your teen into a specialist’s office, which is ultimately what happened in Nicole’s case.
“My doctor prescribed birth control, but upon hearing all of my symptoms, she tentatively mentioned PCOS. My mom and I had never heard of it, and quite frankly, we weren’t that bothered by the diagnosis. Most of the major issues that women with PCOS face, such as infertility, acne, and hair growth, I wasn’t struggling with. That is, until, I took a closer look.”
The Challenges of PCOS Can Multiply Over Time
In Nicole’s case, taking a closer look didn’t take long. The symptoms she hadn’t noticed became glaring.
“I did have a decent amount of acne, more so than the “typical” teenage breakout, especially on my back. Furthermore, I always assumed that I needed to shave so much because I was Italian, but I realized that on top of quick hair regrowth, I also had patches of hair in typically male areas (from my pubic area up to my navel, on the small of my back, and on the nape of my neck). I didn’t uncover most of these symptoms up until recently when I went to an endocrinologist. While the birth control helped regulate my periods and got rid of issues such as the acne, something still felt off.”
What was definitely “off” was her mental state. PCOS can cause depressive symptoms. While mood swings and the blues are common among adolescents, this seemed more extreme.
“On top of physical symptoms, there were psychological symptoms I’d also been having since the age of 11 that I never attributed to PCOS,” Nicole says. “Since that age, I would go through fits of horrible depression and anxiety, which would sometimes lead to cutting and suicidal ideation.”
At first, she went to a therapist and discussed her feelings, but talk therapy wasn’t enough; Nicole figured out she had to be very diligent about her birth control to avoid falling into depressions. And, seeing an endocrinologist helped.
Her endocrinologist officially diagnosed her and did an ultrasound to check for follicles on her ovaries. The specialist also clarified Nicole’s other concerns.
“When I went to the endocrinologist, she explained that women with PCOS have a significantly higher risk of struggling with depression and anxiety,” Nicole says. “This is something that still challenges me, but I’ve learned different coping mechanisms through the years that help me get through it.”
In addition to the depressive dips, PCOS sufferers can also have a variety of other issues, like high cholesterol and triglyceride levels and weight gain. Nicole has those higher levels and currently works with her endocrinologist to treat it with healthier eating habits and exercise.
Current and Future Treatment for PCOS
Currently, there are hormonal options, like birth control pills, which help to regulate cycles (mostly because the pill blocks ovulation, thus shutting down the irregularity). A hormone called progestin can also help to regulate periods.
For high insulin levels, Metformin can help lower them, leading to weight loss and helping to prevent type 2 diabetes.
And for that harmless, yet very disturbing symptom, hairiness (truly the kiss of death for a teen girl), a drug called spironolactone (Aldactone) can be prescribed. This is completely contraindicated during pregnancy; it causes birth defects.
Once women with PCOS reach childbearing age, they might need fertility help. Fertility drugs and IVF are two options.
And, finally, there is research into preventing PCOS altogether. The blog Modern Fertility wrote about the previously mentioned Nature Medicine study, finding that a drug, called GnRH antagonists, might help treat PCOS. These are pretty common and used to treat some cancers, and they’re already used in fertility treatment for PCOS patients.
“This study suggests that we might be able to stop PCOS before it develops by treating pregnant women with this drug, and we can potentially use it to treat women who currently have PCOS,” Modern Fertility wrote. “ It is important to note that there are two commonly recognized types of PCOS, a lean phenotype and an obese phenotype. The authors explain that their mouse model most closely resembles the lean PCOS phenotype, so this treatment might not be able to help all women with PCOS. However, it is still an important step forward.”
The key to PCOS is demystifying it. At the moment, it’s a syndrome, so it will be a permanent part of your teen’s life. Clear communication and a support team of doctors, specialists, medications, and treatments are all necessary to manage PCOS long term. Get ahead of it early, and your teen can live with PCOS, rather than having PCOS run her life.