|Poster by Amanda Kohn, www.implementingdesignism.org|
In the first entry, we discussed its definition and symptoms, and why PCOS is somewhat controversial in fat-acceptance circles.
In this post, we're going to describe how PCOS affects women, how if often develops and presents, and how it can affect women down the line as they age.
In later posts, we will discuss testing and diagnostic issues, its effects on fertility, pregnancy and breastfeeding, and give more details on how it affects menopause and aging.
Readers should know that we'll be doing this mostly from a size-acceptance point of view, rather than the usual "you have to diet" point of view present in most PCOS websites. Weight loss will be discussed as only one possible treatment ─ with an honest look at the potential benefits and drawbacks of weight loss as treatment ─ but other alternatives will be emphasized.
What Does PCOS Look Like?
As one article puts it, "Polycystic ovarian syndrome is a clinically, histologically, and biochemically heterogeneous condition." Translation: PCOS presents in each woman a little bit differently.
The Classic Presentation
The classic case is a woman who:
- is quite heavy
- has very irregular or totally absent periods
- has facial hair growth on her upper lip and/or chin (and often elsewhere)
- has dark patches of skin in various places on her body
- has skin issues, with cystic acne well into adulthood
- struggles with infertility issues
- has trouble getting or staying pregnant
- probably gained a lot of unexplained weight at some point
- has struggled with her weight ever since, often yo-yoing up and down chronically
- has slightly enlarged ovaries with many cysts on them
- has health issues such as glucose intolerance/diabetes, high cholesterol, and blood pressure concerns
Sadly, however, even women with obvious cases of PCOS often go undiagnosed. It's very common for these women to see many doctors for their symptoms before someone realizes what is going on. Too often, her weight is blamed as the source of her symptoms and all other possibilities are ignored. Sometimes, the woman figures out her PCOS status on her own from the internet or a friend, and only then can she get the testing she needs.
Although Stein and Leventhal first "discovered" this condition in 1935, it has taken a long time for doctors to really take it seriously. It is only in the last 10-20 years or so that awareness of it has really taken off. Even so, many providers still just want to blame the woman for being fat and not look deeper for other possible mechanisms. They view fatness as the cause, and refuse to believe fatness could merely be a symptom of a deeper problem instead.
Variations in Presentation
Of course, not every case of PCOS follows this classic profile. If it's hard for women with very obvious symptoms of PCOS to get diagnosed, imagine how hard it is for someone whose case is more subtle!
For example, not all women with PCOS are fat. Some women with PCOS are average-sized ─ but still have very strong issues with insulin resistance and fertility (like actress Emma Thompson). It is unknown why some women with PCOS have weight issues and others do not. It's probably not due to differences in eating patterns but rather to some unknown metabolic difference. Whatever the reason, it can be hard for the skinny woman with PCOS to get diagnosed.
But generally speaking, a lot of women with PCOS have very significant weight issues. The usual statistic quoted is that 50-60% of women with PCOS are "obese" ─ but because many doctors underdiagnose the condition in fat women, it's possible the percentage may actually be higher.
Hirsutism is extremely common in women with PCOS (some sites estimate it is present in 70-80%), but not every woman experiences it. Some have only a little body hair and no facial hair, yet because doctors really look for facial hair as a sign of androgen excess, women without this classic sign are sometimes told they don't have PCOS, despite other pertinent symptoms.
Thinning scalp hair is much less common than hirsutism as a symptom, but is often overlooked as a potential sign of androgen excess. And because many women find ways to cover this up or are too embarrassed to mention it to their doctors, it is underused as a symptom for diagnosis.
Fertility is another symptom that can vary. Many women with PCOS have significant fertility issues, yet not all do. For some, it's closely tied to co-morbidities like hypothyroidism; if they treat that, fertility is less of an issue. Sometimes, fertility for PCOS women is okay in younger years but declines over time, so some only develop infertility later on as the condition progresses.
Although some doctors consider fertility issues central to the diagnosis of PCOS, some women show clear skin and metabolic symptoms of PCOS yet never have problems conceiving or maintaining a pregnancy. Still, they may benefit greatly from treatment of the metabolic issues of PCOS, so many providers have begun to expand their definition of PCOS beyond its past focus on infertility.
Clearly, the heterogeneous nature of PCOS means that there are many gray areas in diagnosis.
How Does PCOS Develop?
PCOS tends to run in families, and can come from either side of the family (mother or father). If lots of women in your family struggle with their weight, have irregular periods, diabetes, hypertension, and other common consequences of PCOS, the chances that you might have PCOS are higher. Or if the males in your family have lots of premature balding and metabolic syndrome, this may also indicate a familial predisposition towards PCOS. However, it takes a combination of genetic and environmental factors for PCOS to manifest itself, so not every family member is always affected. Family history is a clue, not an automatic indication.
Often PCOS first presents a few years after periods begin (although some with very severe cases may show symptoms like acanthosis nigricans and significant fatness even well before puberty). Typically, menstruation begins normally, but within a few years, periods begin to skip here and there. Eventually, menstrual issues worsen; some develop long cycles (more than 35 days), some develop erratic cycles, some skip whole sets of periods, while the most severe cases stop cycling completely.
At some point most women with PCOS develop secondary skin-related symptoms like hirsutism, thinning hair, or significant acne (especially boil-like sebaceous cysts under the skin). These can be quite distressing socially, so this is often when these women begin to seek medical answers, often without success.
It's not unusual for many woman with PCOS to experience a significant, unexplainable weight gain ─ with no change in habits ─ in her late teens or twenties (and sometimes later too); this is often despite similar caloric intakes as women without PCOS. As one website notes:
Approximately 60% of women with PCOS have weight management issues which can lead to obesity with only normal caloric intake. Energy in the form of glucose (food) is stored right away as fat, instead of being made available for other functions within the body. This can lead to chronic fatigue and undernourishment, despite the fact that there is adequate food intake and even an appearance of overnourishment.Those with the most severe cases of PCOS may become supersized because of a vicious cycle of insulin resistance and yo-yo dieting. High levels of insulin in the blood lead to weight gain, so women diet to lose weight, only to regain to an even higher weight as the body's metabolism reasserts itself. Concurrent hypothyroidism can greatly exacerbate this gain. Some women develop eating disorders (compulsive overeating or binge eating disorder) as a result of years of dieting, and many experience very strong carb cravings due to hyperinsulinemia. Thus it can be difficult to untie the influence of insulin issues, yo-yo dieting, eating issues, and disease co-morbidities on weight, but there is often a synergistic effect of all of them together.
In some women, PCOS symptoms accelerate and worsen with time. Those with the most severe cases usually have great difficulty conceiving, often develop diabetes and/or high blood pressure in their twenties or thirties, struggle with sleep apnea and other complications, and become "super obese" at some point from a combination of factors. Co-morbidities like sleep apnea are common, and as a result, many get so desperate they resort to bariatric surgery to try and mitigate their symptoms, regain some mobility, or have a chance at pregnancy.
In other women, the symptoms stay relatively mild throughout their life or progress much more slowly. Often, normal blood sugar and blood pressure are maintained for years, and the only signs of metabolic derangement are subtle differences in labs; a tendency towards weight gain, reactive hypoglycemia and/or gestational diabetes; and skin symptoms (like sebaceous cysts, acne, or thinning hair). However, the symptoms often worsen significantly around or just after menopause, and many are diagnosed with issues like hypertension or diabetes at this time.
A lot depends on the woman's pancreatic beta-cell function. If the pancreas is capable of producing enough insulin to compensate for the insulin resistance in the body, blood sugar remains in the normal range. In those whose beta cell function is compromised, the body is not able to produce enough insulin to overcome the insulin resistance and diabetes develops early.
Some women think that as long as their blood sugar and blood pressure is fine and they don't want children, PCOS is not a big worry. However, just because blood sugar is normal doesn't mean the body is okay; it still has to deal with the side effects of too much insulin and too many androgens in the body. And over the years, this can take a toll, even on those with milder cases.
How Does PCOS Affect Long-Term Health?
As women with PCOS age, the metabolic consequences of years of hyperinsulinemia and excess androgens begin to accrue.
Although you might expect that PCOS symptoms would disappear after the ovaries shut down at menopause, many find that some symptoms actually worsen after menopause instead.
Hirsutism on the face may get even worse, and the hair may thin even more than before. Acne doesn't go away, and problems like sleep apnea may worsen.
Chronic overproduction of insulin also tends to lead to hypertension over time, and it exhausts the pancreas. Therefore even those who had relatively good pancreatic beta cell function and normal blood sugar and blood pressure for years tend to develop diabetes and hypertension as they age.
This means that PCOS has life-long health implications. The tendency towards blood sugar, insulin resistance, blood pressure issues and perhaps an increased rate of clotting means that vascular disease often develops. Many women with PCOS develop heart disease, and may also have a tendency towards stroke.
High levels of androgens may also be connected to the development of non-alcoholic fatty liver disease (NAFLD). One study found more than three times the risk for NAFLD in women with PCOS, even after controlling for BMI and other factors. Higher androgen levels are thought to be the culprit but this still remains speculative.
Cancer is another potential risk. If the woman does not cycle regularly, the uterine lining can build up and endometrial hyperplasia (overgrowth) can develop. Unchecked, this can lead to a higher chance of endometrial cancer. PCOS is clearly associated with a higher risk for endometrial cancer.
Is PCOS connected to the development of other cancers? Some research ties PCOS to a higher rate of ovarian cancer, but research on this is contradictory and unclear. In addition, insulin resistance and hyperinsulinemia may be tied to a stronger risk for colo-rectal cancer. Many researchers speculate that the relatively high rate of unopposed estrogen in PCOS may increase the risk for postmenopausal breast cancer too, although nothing has really been proven at this point.
The connection between PCOS and these different cancers is still being untangled and answers are far from definitive, but clearly there is an increased risk for endometrial cancer at the very least.
Psychological Effects of PCOS
Psychologically, PCOS is a brutal condition.
In its most severe form, a woman is stripped of nearly everything that society sees as womanly, a "theft of womanhood," as some sources call it. She probably is very fat, balding, has a mustache or other facial hair, has acne and body tags, doesn't cycle regularly, and has difficulty having children. She is seen as sexually unattractive, epitomizes the image of the "ugly" woman in our society, and is the object of many jokes and much derision in the media. Is it any wonder some women find this condition incredibly demoralizing?
Adding into this is the lack of understanding around PCOS as a condition. Even when you have an official diagnosis, some friends and family consider it a dubious finding. In their view, you're just looking for an excuse for being fat, crying about how your "bad metabolism" causes your obesity, instead of taking responsibility for your supposedly poor eating. They roll their eyes or accuse you of closet binge-eating instead.
Doctors often don't believe you if you tell them you eat normally either, thinking you must be in denial about your eating, or that you are too uneducated about "proper" nutrition to really understand how to eat healthy. Furthermore, the shopping cart and food intake of a woman with PCOS are under continuous scrutiny and criticism, adding constant stress to daily life. The "obese" woman with PCOS always feels on the defensive about her food or exercise habits.
This disbelief about their experiences and the burden of constant surveillance often takes a considerable toll on PCOS women's self-esteem. And for those who truly do struggle with eating disorders after years of dieting, the shame around dealing with that on top of PCOS can be overwhelming.
Some resources list depression and/or anxiety as one of the possible side-effects of PCOS. It's not clear whether the tendency towards this has a physiological basis, is merely a by-product of mistreatment by society, or is a combination of both. Since many women with PCOS tend to have borderline hypothyroidism (and depression can be a symptom of hypothyroidism), there may be a good argument for a physiological basis. On the other hand, the harassment that women with PCOS receive in society could cause anyone to feel anxious or depressed. Or there may be a synergistic effect between the two.
Either way, there is no doubt that it is very difficult to be a woman with PCOS in our society. Yet the situation is not without hope. Many women with PCOS are able to develop a sense of peace with their body, an inner strength to help overcome the biases superimposed by society. Women with PCOS can be strong and assertive and body-positive; it isn't easy with negative messages all around, but it is possible..
Clearly, PCOS is a difficult condition that deserves to be taken more seriously.
Knowledge about PCOS is evolving, but not all care providers are familiar with this condition. Some don't believe it really exists, some believe it's far more about being fat than about metabolic abnormalities, some apply too-stringent diagnostic criteria, while others diagnose it without ruling out other possibilities first. Therefore it can be very difficult to get an accurate diagnosis.
Unfortunately, there's no one "official" test you can take that will tell you that you do or don't have PCOS. Often diagnosis is less than clear-cut because of co-morbidities and the variability of symptoms.
So even if you've been told that you don't have PCOS, you might simply be at a less severe level on the PCOS spectrum ─ not severe enough for diagnosis, but not clearly "normal" either. Or you might have a phenotype that your doctor did not recognize. Or you might have something that looks like PCOS but is actually caused by another condition. Or you might not have PCOS at all.
Sometimes the answers are elusive and what you are told will vary from provider to provider. This is why it's important to keep asking questions, keep searching for a really good provider, always get copies of your labs and tests, and keep a file of them over the years. It's not uncommon for it to take multiple visits for this condition to get recognized, for testing to be done (or interpreted) incorrectly, or for an optimal treatment plan to be developed. Persistence and good record-keeping is very important.
In the past, some doctors viewed PCOS as a concern only if you wanted to get pregnant, but research indicates it has significant life-long health implications, including higher rates of diabetes, hypertension, heart disease, and some types of cancer later in life.
Because of its implications for long-term health, PCOS deserves to be taken seriously, regardless of the patient's age or whether or not they want children. It needs to be seen as a life-long condition, not just a concern tied to pregnancy.
In the next entry in this series on PCOS, we will talk more about the testing and diagnosis of PCOS. Stay tuned for further entries about PCOS in the future as well.
*Trigger Warning: Not all resources/studies listed here are size-friendly but are listed because they may have some other valuable information or resources. Approach with caution.
General Information and Support for Women with PCOS
Genetics and PCOS
- http://www.ncbi.nlm.nih.gov/pubmed/16728382 - interaction of genetics and environmental factors in PCOS
- http://www.ncbi.nlm.nih.gov/pmc/articles/PMC1820621/?tool=pmcentrez - familial clustering in PCOS
Int J Obes Relat Metab Disord. 2004 Aug;28(8):1026-32. Dietary intake, physical activity, and obesity in women with polycystic ovary syndrome. Wright CE, Zborowski JV, Talbott EO, McHugh-Pemu K, Youk A. PMID: 15159768
"Although women with PCOS had a higher BMI than control women, an overall comparison of women with and without PCOS showed no significant difference in dietary intake. However, stratification by BMI revealed that lean women with PCOS reported significantly lower energy intake than lean women without PCOS. CONCLUSION: Differences in dietary intake and physical activity alone are not sufficient to explain differences in weight between women with and without PCOS."Gynecol Endocrinol. 2011 May 24. Diet composition and physical activity in overweight and obese premenopausal women with or without polycystic ovary syndrome. Alvarez-Blasco F, et al. PMID: 21609197
"We aimed to find differences in diet and life-style that might contribute to the development of PCOS among overweight or obese premenopausal women. We compared diet composition and self-reported physical activity among 22 patients with PCOS and 59 women without androgen excess recruited from a total of 113 consecutive premenopausal women reporting for management of weight excess. After correcting for a difference in age between women with PCOS and controls, there were no overall statistical significant differences between them in the total caloric intake, in the intake of macro- and micro-nutrients, caffeine, fiber and alcohol, in the proportion of women exercising regularly, or in the number of hours of exercise per week. The proportion of fat in the diets of the overweight and obese women irrespective of PCOS was well-above current recommendations, yet this excessive fat intake occurred at the expense of monounsaturated fatty acids mostly. In conclusion, diet composition and physical activity were apparently not decisive for the development of PCOS among overweight and obese premenopausal women."PCOS and Psychological Effects
- http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3108690/?tool=pubmed - Psychological effects of PCOS, as well as possible long-term health risks
- http://www.ncbi.nlm.nih.gov/pubmed/18672334 - Depression, anxiety, and suicide attempts among women with PCOS
- http://www.ncbi.nlm.nih.gov/pubmed/19454378 - Depression and affective disorders in PCOS
- http://www.ncbi.nlm.nih.gov/pubmed/18249398 - Depression, mood disorders, and binge eating disorder in women with PCOS over time
PCOS and Long-Term Health Risks
- http://pcos.about.com/od/relatedconditions/a/endocancer.htm - PCOS and risk of endometrial cancer
- http://humupd.oxfordjournals.org/content/7/6/522.full.pdf - PCOS and cancer risks
- http://www.ncbi.nlm.nih.gov/pubmed/20111659 - PCOS and cardiovascular risks
- http://www.ncbi.nlm.nih.gov/pubmed/21335359 - PCOS, heart disease, and strokes
- http://www.ncbi.nlm.nih.gov/pubmed/21251033 - PCOS and non-alcoholic fatty liver disease