All women are familiar with the uncomfortable symptoms of menstruation – cramps, headaches, bloating, and an increased need to cry and eat chocolate are among those that are most popular.
But some women experience another list of symptoms that are a little more irregular, such as prolonged weight gain, dark hair growth, irregular bleeding and ovulation, and severe acne. While all periods are uncomfortable, these are symptoms of another medical condition, known as polycystic ovary syndrome (PCOS).
PCOS has recently been making headlines more frequently. Just last month, congresswoman Abby Finkenauer secured extra funding to increase research for endometriosis, another women’s health condition associated with menstruation and reproduction. Now, a number of women’s health problems, including PCOS, are being highlighted with the hope that funding for more research and treatment will be gained.
My Story
It is not a coincidence that the recent headline-making PCOS has had caught my eye. For me, this is not a random string of letters. I was diagnosed with PCOS at age 13, when the ideas of fertility and making consciously healthy diet choices were far from my mind. All I knew at the time was that my periods were excruciatingly heavy and painful, often leaving me curled up in a ball on the couch. My acne was worse than most of the girls in school, despite the fact that I had tried just about every skincare program on the market. And I had dark, thick hair growing on my body where other girls had blonde, fair fuzz.
My doctors did not explain much to me when they handed over a birth control pill. All I knew wast that it helped me feel better. However, the acne and dark hair persisted, and as my teenage years went on, research helped me discover beauty regimens that made me feel more confident in my own skin.
It wasn’t until I was in college that I finally was able to have a full conversation with my doctor about what PCOS meant. After years of thinking of the condition as mostly a complication to my physical appearance, I was devastated by the news that I would one day perhaps struggle to get pregnant. At that point, my periods had been nonexistent for over a year because I had been neglecting to take my medication, and the doctor’s main concern was the risk that put me at for developing endometrial cancer. I was put back on the pill, and I returned to normal life, told to come back if my symptoms worsened or when I was married to talk about having children. Any questions I have had since then about fertility have always been brushed aside; the doctor told me I obviously was not fertile now, so we would wait to talk about treatment options until I was actually interested in having children.
This uncertainty and possible infertility has hung like a weight over my head since that appointment. I am in my early 20s, but already friends have begun having children, and I can’t help but feel an ache when I think about the possibility that I may never be able to do the same. Every conversation I have with my fiancé about our future children and child-rearing is always encased by the possibility that all the topics we are discussing may never come to fruition. I have read from multiple sources that the feeling of shame that comes with PCOS is not uncommon. While we have come a long way in society from thinking of women primarily as child-rearers, I still always had the expectation of myself that I would be able to do the natural process that women have been doing since the dawn of time.
What is PCOS?
According to the Mayo Clinic, PCOS is a hormonal disorder characterized by “infrequent or prolonged menstrual periods or excess male hormone (androgen) levels.” The cause of PCOS is unknown, which makes treatment more complicated and is why women and doctors are now fighting for more funding for research. According to the Mayo Clinic, if PCOS is caught and treated early, it can help “reduce the risk of long-term complications such as type 2 diabetes and heart disease.”
However, the Mayo Clinic does mention a few possibilities being explored for the cause of PCOS. Excess insulin in the body can increase androgen production, which can complicate normal ovulation. Another thought is that inflammation in the body may stimulate the ovaries to produce more androgens. Other causes often cited are an excess of androgen in the body for unknown reasons or heredity.
According to Self Magazine, there are three diagnostic symptoms. The first is irregular periods, characterized by infrequent periods and/or having irregularly heavy bleeding during periods. The second is excess androgen in the body, which can cause dark facial and body hair growth (known as hirsutism), acne, and sometimes male-pattern baldness. The third common symptom that characterizes PCOS is not visible to the eye – it can only be found with an ultrasound. Polycystic ovaries are ovaries that contain follicles that surround the eggs. This can cause the ovaries to function irregularly, such as failing to release eggs in a normal pattern.
Other common symptoms of PCOS, according to WebMD, include skin darkening, trouble sleeping, headaches, infertility, and weight gain.
Diagnosis and Treatment
According to Self Magazine, there are multiple ways doctors diagnose PCOS because there is different diagnostic criteria. The latest criteria, published in 2009 by the Androgen Excess and PCOS society, said “someone would need to exhibit hyperandrogensim plus either of the other possible signs to be diagnosed with PCOS.”
There is no current cure for PCOS, so the focus is normally on treatment. According to the U.S. Department of Health, a patient’s treatment plan varies based on her personal symptoms, whether she is currently trying to get pregnant, and whether she is at risk for any long-term health complications. The most common first treatments for PCOS include lifestyle changes to achieve a healthy weight and taking a birth control medication.
Why isn’t there more research?
Self Magazine recently released an article posing one simple question: “Why is PCOS still so hard for doctors to understand?” Quite simply, there has not been enough research to give doctors the answers they need. There are two reasons for this.
First, according to Leanne Redman, Ph.D., director of Reproductive Endocrinology and Women’s Health Research Program at Pennington Biomedical Research Center, there aren’t enough willing participants in studies. In order to participate in a study, Redman said patients have to stop taking their medications. And according to Dr. Andrea Dunaif, M.D., chair of endocrinology at Mount Sinai School of Medicine, the dropout rates for prolonged studies are high.
Secondly, there is not enough funding. According to a study published in The Journal of Clinical Endocrinology and Metabolism, “PCOS research may be underfunded considering its prevalence, economic burden, metabolic morbidity, and negative impact on quality life.” Funding for PCOS is limited because it has been characterized by the National Institutes of Health (NIH) as a reproductive disorder, which means it receives most of its funding from organizations that research reproductive health issues. However, PCOS is also a metabolic disorder, meaning it has greater impact on other areas of life than it is recognized for, and, therefore, it has the potential for more medical funding.
Takeaway
There is one major takeaway I would like to have from my story, and that is there needs to be more transparency and conversation associated with women’s health issues. Even while writing this, it crossed my mind that some people would balk about seeing something written bluntly about menstrual bleeding and cramping. Although, this seems odd to me because, according to DAME, a company that makes products for menstruation, women spend an equivalent of 10 years of their lives on their period. But, in my experience, the lack of open conversation about menstruation, even among women, leads to a lot of unknowns surrounding women’s health. For instance, it wasn’t until I started working in holistic health that I learned about foods I could eat to ease my symptoms. Many women I know are unaware of the amount of chemicals in tampons and pads, which most of us, including myself, continue to use because they are cheaper and more readily available than safer alternatives. And in my particular case, I have not even had the option to have a transparent conversation with my gynecologist about treatment options.
Transparency and openness in women’s health can make sure that women live healthier lives. For me personally, transparency about my own experience helped me to learn about more treatment options, and it helped me to realize that I am not alone. As soon as I started talking about PCOS, I realized how prevalent it is. According to the Centers for Disease Control and Prevention (CDC), six to 12 percent of women in the United States who are of reproductive age have PCOS, making it one of the most common causes of female infertility.
But more importantly than that, 100 percent of women experience menstruation and the struggles that come with it, which means this a conversation we need to be having.