Young Women with PCOS Worry About Future Fertility

Polycystic ovary syndrome (PCOS) is frequently part of the discussions at IVFConnections because of its impact on fertility. These PCOS discussions are usually from the perspective of older women who experience anovulation or irregular menstruation and are struggling to try to conceive. But PCOS doesn't just appear in adulthood; its onset is peri-menarchal, and it affects women from puberty throughout the rest of their lives. The immediate physical manifestations of PCOS, including weight gain, acne and hirsuitism are emotionally stressful for young women. But when young women think about their futures with PCOS, their biggest concern about living with the disorder is the "what ifs" they have about their future fertility.

PCOS is an endocrine disorder that has long-term effects on the emotional well-being of women. The syndrome emerges during puberty, and the first and most frequent symptoms noticed include weight gain, acne, irregular periods and hirsutism. The peri-menarchal period of development is already marked by the onset of physical changes and secondary sex characteristics. This awkward period of time during adolescence is often made worse by the presence of PCOS.

Polycystic ovary syndrome is accompanied by a host of long-term health issues, some of which emerge early and others of which become evident later in life. Infertility is one of the most well-known problems associated with PCOS, but there are other problems and health concerns that are less well-known to the general public. Polycystic ovary syndrome is associated with metabolic effects including weight gain and the inability to lose weight across lifespan. Other related metabolic effects are hyperinsulinemia, dyslipidemia and hypertension. Combined, these later onset problems can lead to heart disease and type II diabetes.

FACT: The participants' concern about fertility was the single most important, overriding worry about their futures with PCOS. NOTE: The researchers did not address this concern as part of their study-based nursing recommendations at the conclusion of the article.

Young women who are diagnosed with polycystic ovaries face the initial emotional upset of having several visible, undesirable physical consequences of PCOS: weight gain, excessive hair growth and acne. But these young women also learn what is likely in store for them later in life as a result of their PCOS. Yet while the physical effects of PCOS are fairly well known, very few studies have been done to examine the emotional experiences of young women who live with polycystic ovary syndrome. Young women become aware of the metabolic effects of PCOS and know that these problems are highly likely to emerge in adulthood, but few researchers have investigated how young women are affected by this knowledge.

Two researchers have completed a small study to explore young women's experiences living with polycystic ovary syndrome. The study, published in the most recent volume in the Journal of obstetric, gynecologic & neonatal nursing, was designed to explore psychosocial effects of living with PCOS. Semistructured personal interviews were conducted with research subjects to arrive at a qualitative narrative of these women's experiences. The researchers noted that due to the relatively young age of the respondents (all were between the ages of 18 and 23), when looking toward the future, their perspective was one of "relative youth looking towards life's experiences in their late 20s, 30s, and beyond".

Interestingly, the participants' concern about future fertility was found by the researchers to be the single most important, overriding worry in the study. After infertility, the young women admitted to being anxious about their future health; specifically, their likelihood of developing serious health complications of PCOS later in life. When thinking about their present experience, the women reported being emotionally drained by all of the appearance-related consequences of PCOS; it has a negative affect on their quality of life.

The researchers recommend that healthcare providers work on fostering more supportive relationships with girls and young women diagnosed with PCOS, addressing individual quality of life issues that crop up. In addition, young women need more information about the direct link between health and wellness-related activity (losing weight) and PCOS (reducing insulin resistance).

Interestingly, infertility was not addressed by the researchers as part of their recommendations. This is surprising, considering that their primary concerns about their future health centered on reproduction and whether or not they'd be fertile when they were ready to have children.

IVFConnections strongly believes that healthcare providers who diagnose and treat PCOS in young women have an obligation to provide additional education to these women about the syndrome. In addition to information about PCOS, these young women need to understand how PCOS can affect infertility and how other factors (such as age) can affect fertility. Preemptive education about reproductive health and fertility will empower young women to take control and it will give them the much-needed support and information that they perceive is currently lacking from their healthcare providers.

Source:
Weiss, T. and Minor Bulmer, S. (2011) Young women's experiences living with polycystic ovary syndrome. Journal of Obstetric, Gynecologic & Neonatal Nursing. 40(6), pp. 709-719

DOI: 10.1111/j.1552--6909.2011.01299.x