Polycystic Ovarian Syndrome (PCOS)* is an endocrine disorder estimated to affect more than 1 in 10 women and is the leading cause of female infertility. The root cause of PCOS is thought to be insulin resistance. It is a close cousin of diabetes, sharing many of its increased health risks.
PCOS also raises the risk of cardiovascular disease, and is associated with higher rates of depression and anxiety, as well as endometrial cancer. Symptoms often first appear during adolescence, but too frequently, women go undiagnosed for years.
In recent years there has been an incredible surge in PCOS communities online. PCOS needs to be brought into the public health spotlight. Women’s health suffers because the vast majority of people aren’t aware that this prevalent disorder exists, and even when women seek out medical advice, their doctors may treat the symptoms without diagnosing their cause.
Some women have only one or two symptoms. Others, myself included, may experience almost every single one on the list to varying degrees:
- Irregular or absent menstrual cycles
- Obesity/unexplained weight gain/difficulty losing weight
- Infertility or recurrent miscarriages
- High cholesterol levels
- High blood pressure
- Excess or abnormal hair growth and distribution (hirsutism)
- Pain in the lower abdomen and pelvis
- Multiple ovarian cysts (often only seen on ultrasound)
- Skin tags
- Acanthosis Nigricans (dark, velvety patches of skin)
I was diagnosed with PCOS ten years ago at 26, when I was ready to get pregnant. I’d suspected something wasn’t quite right for several years. My periods were never remotely close to regular. As a teen, I averaged 6 to 8 cycles per year. Doctors told me I would “grow out of it,” and at 19 I was told that The Pill would help regulate my cycles. It didn’t.
I now know my sporadic cycles are a common symptom of PCOS. My last semester of college, I experienced my first spurt of sudden weight gain. I was underweight as a teen, but at 21 gained 20 pounds in the course of a semester. Over the next two years 20 pounds turned into 60. I felt like I’d completely lost control over my body. It became alien, and I began to view it as my enemy.
By the time I was 24, I decided to stop taking The Pill, thinking it might be the weight gain culprit. Then I didn’t have a period for 7 months. I made an appointment with an OB/GYN who prescribed Provera on my first visit to jumpstart my menstrual cycle. The only thing she said about my sporadic cycles and the weight gain was that we should check my thyroid, which came back normal.
When I asked if I would have trouble getting pregnant, she said,
“We’ll have to wait and see. It would help if you lost some weight.”
Words women with PCOS hear too often, without receiving a thorough evaluation or referral to the appropriate specialist. I still feel angry when I recall how casually my concerns were dismissed.
Fast forward a couple of years. Due to a job and insurance change, I switched to a new OB/GYN. By this time, my husband was within sight of earning his Ph.D., and we’d begun talking about trying to conceive. After learning that the university Student Health Services provided pre-conception counseling, we made an appointment. I will be forever grateful to the nurse we saw that day for tipping me off that the symptoms that had gotten progressively worse through my 20s had a name. While reviewing facts about increasing chances of conception, she came to a card in her education kit that named the four most common causes of infertility. PCOS was one of them. I asked her to explain what it was, and as she talked the light clicked on. We discussed my own history, and she immediately said I should be evaluated for PCOS. After having a miscarriage at 6 weeks, I was referred to a reproductive endocrinologist. I was finally in the right hands.
In “A Patient’s Guide to PCOS,” Dr. Walter Futterweit states that women with PCOS experience early miscarriage at three times the normal rate. Under the care of a reproductive endocrinologist, I conceived and gave birth to my first daughter, following a second miscarriage that occurred at 8 weeks. My younger daughter was a very welcome surprise, as I managed to get pregnant without any fertility drugs or other medication after regaining control of my health and losing weight.
The journey that led to the birth of my two gorgeous girls was far from straight. They are my Hope and Grace, middle names that honor their great-grandmothers, as well as the gifts they are to us.
My goal is to raise awareness and prevent other women from suffering from undiagnosed health issues and infertility, potentially going without answers for many years. We must educate our daughters and other young women in our lives about their bodies and normal cycle lengths, for our menstrual cycles are an extension of our health, and an abnormal cycle may be the first sign of PCOS.
In my next article, I plan to cover information about testing, what doctors to seek out for accurate evaluation, treatment options, as well as the importance of nutrition and exercise.
*Please note that PCOS is referred to as both polycystic ovarian syndrome and polycystic ovary syndrome in medical literature.
To Learn More about PCOS or Take a PCOS Quiz:
- The University of Chicago Center for PCOS
- The Polycystic Ovarian Syndrome Association
- PCOS & Teens
- PCOS Quiz for Teens
- A Patient’s Guide to PCOS by Walter Futterweit, MD (This book also includes a PCOS quiz.)