“The medical industry is always trying to preserve women’s ovaries to have a baby,” lamented Erin Barnett, a woman with endometriosis and polycystic ovarian syndrome (PCOS). “But I want them to put the same amount of effort into helping me be pain-free.” In an article in the Canberra Times and in her book, Endo Unfiltered, Barnett describes how, for decades, doctors completely disregarded her level of pain and discomfort while dealing with PCOS in favor of preserving her fertility. This is the case for many women living with PCOS and other related conditions. Doctors need to start focusing on the whole-body impact PCOS has on the many women with the condition and to prioritize patients’ stated desires above the preservation of their fertility. Physicians often deprioritize and belittle women’s quality of life, and PCOS is an excellent case study through which we can see the prevalence of this issue within the medical community.
Although not immediately life-threatening, PCOS is a chronic, incurable condition affecting at least 1 in every 10 women. This number is likely inaccurate, because researchers at the Robinson Institute of the University of Adelaide estimate that up to 70% of women with PCOS around the world remain undiagnosed. With PCOS, women can suffer from several symptoms: a highly irregular and especially painful menstrual cycle, facial hair, male-pattern baldness, cystic acne, dark and velvety patches of skin, obesity, extreme difficulty losing weight, insulin resistance and diabetes, sleep apnea, a higher risk of uterine cancer, and ovarian cysts that vary in size and severity. But most doctors only focus on one thing: PCOS can also cause infertility.
This focus on infertility has emerged from a historical contestation over defining PCOS. Doctors have historically disagreed about what causes PCOS. There is a popular rumor that it is caused by a modern culture that promotes obesity and eating processed foods, but studies have found this probably isn’t true. In fact, some scientists believe that PCOS has been around since the Paleolithic era and remained prevalent because it gave women certain advantages, such as sturdiness, strength, and lower mortality rates. In 1721, doctors began investigating polycystic ovaries and hyperandrogenism, concentrating their studies on whether the women in question were able to successfully conceive after experimental treatments. They mostly focused on the abnormal physical appearance of the ovaries and infertility. In the following centuries, doctors and other medical researchers reported on the presence of cysts and enlarged follicles on women’s ovaries. Only in 1935 did two gynecological researchers, Irving Freiler Stein and Michael Leventhal, report on the different effects these types of ovaries could have on the female body. The illness was dubbed Stein-Leventhal Syndrome, and the researchers’ work constituted the first significant investigation into PCOS. Since then, however, there has been a serious lack of research into the condition as well as a lack of public knowledge about its existence.
Over the course of the 20th century, the medical community took an increased interest in and performed more research into women’s health. Our Body, Ourselves, originally published in 1970 by the Boston Women’s Health Collective, was one of the first books that comprehensively detailed conditions and illnesses facing women. The publication began as a pamphlet on women’s health and grew into a book as its authors researched more medical conditions affecting women. In the 1998 edition, PCOS is mentioned only once. It would make sense for PCOS to be mentioned in other sections relevant to the symptoms the condition causes, such as insulin-related conditions, menstrual cycles, or hirsutism. But it isn’t mentioned in those places at all. Rather, it is given two sentences in the section entitled: “A woman may experience infertility because…” Our Bodies, Ourselves is a groundbreaking text intended to provide women with detailed medical information about their bodies amidst a male-dominated culture of dismissal and secrecy. But even this book was not infallible and was infected by the cultural standard of over-focusing on women’s fertility.
Formal diagnostic criteria for the condition were not created until the 1990s. This is due to many things, including the fact that the pain and discomfort of women have consistently been ignored or dismissed by medical professionals. In addition, many women with PCOS retain the ability to become pregnant, putting the issue even further down the medical field’s list of priorities. Today, most doctors go by the Rotterdam Criteria and will diagnose patients if they meet at least two out of the three listed points. The list includes irregular or absent periods, physical or chemical signs of hyperandrogenism, and polycystic ovaries as shown on an ultrasound. This list is not at all comprehensive and leads to ignorance about other markers of PCOS, such as acanthosis nigricans (dark, velvety patches of skin), obesity, and insulin resistance.
For many women, PCOS is seen as a curse. Many women with PCOS have internalized societal beliefs about what makes someone really a woman. When interviewed, many women with PCOS reported feeling “freakish” and like their womanhood had been stolen from them. Some have posited that PCOS has a biological component that causes depression and anxiety, but the plurality of data suggests that women with PCOS suffer from depression and anxiety at a greater rate than the rest of the population because of the social stigma surrounding the condition.
The ambiguity of whether a woman with PCOS is truly a woman and the focus doctors have on preserving fertility are related issues. To many, a woman’s fertility is the defining characteristic of her sex and gender. Kate Morris, who spoke about her experience with PCOS in front of the UK Parliament’s Petitions Committee, recounted how devastated she was when she found out she would never naturally have regular periods: “But periods are what make me a woman!” Patients are not the only people who feel this way. Historically, medical research regarding women’s health has been hyperfocused on fertility and pregnancy, while ignoring many of the other important concerns affecting women. If the most important — if the only important — aspect of a woman is her ability to give birth, why bother focusing on anything else?
Just as doctors disagree about the causes of PCOS, they also disagree about how it can be treated. Many doctors promise that patients will find symptom relief once they become pregnant, or that their symptoms will disappear after menopause. Neither of these claims has been proven. In the last twenty years, doctors have come to a consensus that birth control pills are the best treatment for the condition, and can be supplemented with Metformin, a medication that regulates insulin production and ovulation. But if patients don’t want to endure the long list of side effects from these two medications, many doctors have no idea what else to offer. No doctors specialize in PCOS, and patients often find themselves seeing multiple doctors in order to find help, including general practitioners, gynecologists, and endocrinologists. Many women are dismissed and disregarded when they describe symptoms, being told that they are to blame for their own health issues or that they are overreacting.
The historically-myopic view of women’s health helps us to understand why serious women’s health issues, such as PCOS, go under-researched and misdiagnosed. In the future, the medical community must make a massive shift toward researching chronic women’s health issues outside the narrow scope of fertility research. Without this change, doctors will continue to dismiss and disbelieve a significant percentage of women when they explain their legitimate health concerns. Doctors must work against their own biases so they can listen to the complaints of their female patients and take them seriously. Kate Morris put it best: “Fertility is only one part of a woman’s lifelong journey with PCOS. Progress has clearly been made there, but the part of the journey that goes from teenage diagnosis to failure to conceive is ignored.”
- Boston Women’s Health Collective. Our Body, Ourselves for the New Century: A Book by and for Women. 1998 ed., Touchstone, p. 534 ↑