Note: Polycystic ovary syndrome (PCOS) is a complicated condition. As blogger, PCOS patient and advocate Jessica Orris points out in her article below, it can mean very different symptoms for different women. Dr. Lori Homa, a reproductive endocrinology and infertility specialist (and PCOS expert) at the Allegheny Health Network, adds that, because “diagnostic criteria are still imprecise, PCOS is both commonly over-diagnosed and commonly missed, which can lead to unnecessary anxiety and frustration.” We are publishing Jessica’s inspiring story to raise awareness about PCOS, and to encourage the kinds of empowering conversations that she now has with her doctors and care professionals. The article is not intended as medical advice.

Polycystic ovary syndrome, or PCOS, is something of a misnomer. While the condition does affect the ovaries, it is also an overall metabolic disorder that affects as many as 1 in 10 women.

I am one of those women.

PCOS is primarily associated with hormonal abnormalities, including irregular or absent menstrual periods, cysts on the ovaries, and infertility. But that’s just the tip of the PCOS iceberg. Other symptoms and side effects include:

  • Insulin resistance
  • Difficulty losing weight
  • Excess hair growth in unwanted areas, and thinning hair on the head
  • Increased risk of cardiovascular disease
  • Greater risk of type 2 diabetes
  • Depression and anxiety

PCOS can involve a myriad of other issues — it is different for every woman, and getting information specific to you is key to learning to manage it. Unfortunately, the only known risk factor for developing PCOS is having a female relative with it. But many of us are the first or only women in our families to develop this condition.

Growing Up With PCOS

As a teenager, I had been dealing with having a period for several years, so when, at age 17, it mostly disappeared, I knew something wasn’t right. Like many doctors at the time, my physician was unaware of and didn’t suspect PCOS, and just put me on birth control to regulate my menstrual cycle.

As the next few years progressed, I would go to him with other problems, including unexplained weight gain and facial hair. Each time, he told me I simply needed to lose weight, or that it was all in my head. During one visit, while discussing my hormonal issues, I distinctly remember telling him, “I feel like all of this is related somehow.” His answer was a flat, “No.”

I was reluctant to trust his opinion. I’d gained about 40 pounds in six months. I had gone three months with no period at all, and my electrolysis treatments couldn’t keep up with the increased hair growth.

My doctor would only agree to perform a fasting glucose test, as if the sole question was whether or not I had diabetes. When the glucose test came back with results in the “healthy” range, he refused to look any further into my symptoms, repeating that I should concentrate on losing weight. (I later learned that an oral glucose tolerance test (OGTT) would have been more likely to show if I was having blood sugar issues related to insulin-resistance.)

I eventually found a new doctor, but after being told for so long that my issues were all in my head, I was reluctant to mention them.

A Proper Diagnosis

I was finally diagnosed with PCOS at the age of 27, after my mom read a magazine article on the disorder. I took the article to my new doctor and explained to her why I had never told her all of my symptoms. She understood my reasoning and said I was a classic case of PCOS.

Unlike many women, I was relieved to have a diagnosis. A diagnosis meant we could move forward with a treatment plan. Having a name for what I was going through helped me realize that I was not the hormonal “freak” I had come to feel I was. A diagnosis meant that I was no longer fighting an uphill battle alone. I was not the hypochondriac my previous doctor made me out to be.

At the time, my husband and I had been trying to get pregnant with no luck. My doctor told me that PCOS meant that my likelihood of conceiving without some sort of help was low, but that treatments for infertility were often successful (see sidebar). Unfortunately, I turned out to be one of the exceptions and wasn’t able to have a baby despite a couple years of treatments.

During that same period, I heard that a PCOS study was being conducted at Hershey Medical Center, and I enrolled. During my preliminary testing, which included an OGTT, the doctor informed me I was on the verge of becoming diabetic. I was terrified. Diabetes runs in my family, but I never thought I’d become diabetic in my early 30s.

The nurse I was talking to said, “Don’t panic. You didn’t get this way overnight. You have time to correct it.” I learned about the effect diet and weight loss can have on managing the symptoms of PCOS, as well as prediabetes, type 2 diabetes and fertility. I tried to limit sweets and cut out as many refined carbs as possible on a daily basis by switching to whole wheat flour, replacing white or (enriched) wheat bread with whole wheat bread, and using whole wheat pasta. In a few months, I was able to lessen my risk of developing diabetes through diet alone.

I participated in several research studies, trying to absorb everything I could in order to apply it to my own life. This gave me free access to doctors, nurses and dietitians who were well versed in PCOS throughout the duration of the studies, and I was determined to make the most of it. I learned that my inability to lose any significant weight and some of the symptoms I’d experienced were related to my hormonal condition.

The more I learned, the more my own personal history made sense. By learning so much about my condition, I became able to educate other women about PCOS, and I also gained confidence about talking with other doctors. Knowing more about PCOS, and about my health in general, was a huge relief after years of feeling as though doctors were dismissing my symptoms or saying that I was to blame for everything that was happening.

Jessica Orris

My PCOS Team

Like other metabolic conditions, PCOS demands lifetime monitoring. At this point, since I am no longer seeking fertility treatment, I only have one “maintenance appointment” per year. I have blood work done annually now, unless I have an acute issue.

It’s been 15 years since I was officially diagnosed with PCOS. I have a team of professionals who continue to help me navigate through this ever-changing maze, including a world-renowned PCOS expert right in my backyard at Hershey Medical.

My nutritionist also has PCOS, and is an expert on the subject. She’s helped me understand how to manage my diet to feel the best that I can, that the insulin imbalance is what causes my cravings for carbs, and the vicious circle that is insulin resistance. She’s also helped me learn not to feel guilty about what I eat.

I have a massage therapist who helps manage my stress and pain. And, of course, I still see my primary doctor. My team knows how hard I try, and they help me celebrate my victories, no matter how small.

Living With PCOS

Many women think that, because they’ve gone through menopause or lost weight, their PCOS has been cured. Unfortunately, PCOS never goes away. The symptoms can be managed and greatly improved, and the effects may change as we get older, but there is no cure. Doctors and researchers are just starting to really explore the changes and effects of PCOS as women age.

I continue to learn as much as I can, and educate as many people as possible, because information is empowering when it comes to PCOS. I tell almost everyone I know that I have PCOS because I never know whom they know who might benefit from the information. As my story shows, awareness of PCOS symptoms is everything. The two things I most commonly tell women who come to me thinking they may have PCOS, or who have just been diagnosed with it, are:

  1. If you think something’s not right, tell your doctor. And make sure your doctor is someone you trust to listen, take you seriously and work with you to address what’s going on. (I wish I had done this sooner.)
  2. PCOS is not a death sentence, and with treatments, most women can still have a baby.

To this day, many doctors may be slow to diagnose PCOS, in part because the disorder can vary so greatly from woman to woman.

Unfortunately, the cause of PCOS is not yet known. Increased awareness can not only save women (and their mates) heartache and health issues, it can drive more funding for research as well. I’m proud to say that the research I’ve participated in has already started to help drive changes in the medical community in less than 10 years. I have improved my overall health, thanks to all that I have learned since finding exceptional health care providers.

Perhaps the most important thing I’ve learned through my experience is this:

You live in your body every day. You know when something’s not right. I urge you to be your own advocate, educate yourself and talk to your doctor.