PCOS: How Does PCOS Affect Women?

Poster by Amanda Kohn, www.implementingdesignism.org

We've just started a new series on Polycystic Ovarian Syndrome (PCOS) in honor of September, PCOS Awareness Month. 

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

Women like these are fairly easy to diagnose with PCOS because their symptoms are so clear.  The main markers looked for in PCOS (irregular periods, physical signs of too many androgens, and cystic ovaries) are obviously present. 

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..

Conclusions

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.


References

*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

www.pcosupport.org
www.soulcysters.com

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

PCOS and Dietary Intake

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

PCOS: A Condition Every Person of Size Should Know About

Today, we start a new periodic series about PCOS (PolyCystic Ovarian Syndrome) in honor of PCOS Awareness Month.

This is an extremely important topic to understand when discussing pregnancy, birth, and breastfeeding in women of size ─ or even just general health in women of size ─ yet it's surprising how many "obese" people (and even medical professionals) are still under-informed about it. 

PCOS can be a bit of a controversial topic in Fat-Acceptance communities because weight-loss regimens are so closely associated with it.  PCOS support groups teem with women desperately trying to lose weight, and informational sites about PCOS almost always push weight loss.  It can be very difficult to get information about PCOS without being bombarded with a weight loss agenda, yet many women in the FA community are desperately in need of weight-neutral information and support for PCOS.

Another problem is that PCOS can be very difficult to diagnose.  As a result, many fat women with PCOS are erroneously told they don't have it, despite symptoms suggestive of it, while others are spuriously told they do have it, simply because they are fat.  Often, PCOS exists with significant co-morbidities (like hypothyroidism, adrenal issues, and other hormonal imbalances) that muddy the diagnostic waters even further. 

As a result, some in the fat-acceptance world dismiss the concept of PCOS entirely, or simply throw up their hands and give up trying to figure it all out.  And honestly, figuring out PCOS can be incredibly complex, even for those well-read in the subject. 

Yet many women of size are affected by PCOS, whether they know it or not.  And it doesn't just impact fertility and pregnancy; PCOS has life-long health implications.

It doesn't matter whether you intend to have children or not, or whether you are even of childbearing age; PCOS is still relevant to every fat person because of its other health implications. Truly, this a condition every person of size should know about.

For those who don't know that much about PCOS, this series will be a primer about it. First we'll start with a description of it and its most common symtpoms. Next, we'll segue to a quick discussion of how it typically presents, and then to its testing and diagnosis. Eventually, we'll consider possible causes and controversies; its impact on fertility, pregnancy, and birth; its impact on breastfeeding; treatment options; and implications for menopause and long-term health.

For the sake of readability, we'll break this series up into a number of different posts; some may be periodic instead of continuous due to time constraints. 

Hopefully, the series will serve as an introduction to basics about PCOS, a gateway to other information sources on the topic, and a weight-neutral "safe" space to discuss PCOS concerns in a weight-centric PCOS world. 

What is PCOS?

First, a definition.  From Wikipedia's entry on PCOS:

Polycystic Ovary Syndrome (PCOS) is one of the most common female endocrine disorders affecting approximately 5%-10% of women of reproductive age (12–45 years old) and is thought to be one of the leading causes of female infertility.

The principal features are obesity, anovulation (resulting in irregular menstruation) or amenorrhea, acne, and excessive amounts or effects of androgenic (masculinizing) hormones. The symptoms and severity of the syndrome vary greatly among women. While the causes are unknown, insulin resistance, diabetes, and obesity are all strongly correlated with PCOS

According to one study, "PCOS can be viewed as a heterogeneous androgen excess disorder with varying degrees of gonadotropic and metabolic abnormalities."  Translated: PCOS is a disorder that presents differently in different people (heterogeneous), usually presents with abnormally high levels of "male" hormones (androgens), resulting in problems that impact the reproductive system and metabolism (gonadotropic and metabolic abnormalities).

PCOS was first identified in 1935 by doctors Stein and Leventhal, so for a while it was referred to as "Stein-Leventhal Syndrome." It later became known as "Polycystic Ovarian Syndrome" because many women with this syndrome had multiple cysts on the ovaries.  This occurs in PCOS when egg follicles form and start to mature, but hormonal imbalances keep the follicles from fully developing and releasing.  These incompletely developed follicles (cysts) on the ovaries have a characteristic "string of pearls" appearance, and the prevalence of these cysts gave the syndrome its name.

However, the name "PCOS" makes it sound like the problem begins in the ovaries, when instead it results from a complex endocrine disorder, affecting many systems of the body.  The accumulation of multiple cysts on the ovaries is merely one of the many possible side effects of the condition, yet the name has stubbornly stuck because it is catchy and easy to remember.

So although the moniker of Polycystic Ovarian Syndrome is a less-than-ideal description of the condition, it remains the name most commonly used for it and that will probably never change.

Symptoms of PCOS

Symptom lists for PCOS vary quite a bit from source to source.  Some only list a few symptoms, while others list everything but the kitchen sink. 

The following seem to be the most common symptoms associated with PCOS, but be aware that the validity of some are debated:

• Menstrual Cycle Difficulties
• irregular/long, or completely absent menstrual cycles (oligomenorrhea or amenorrhea)
• periods that can be abnormal when they do occur (excessively heavy or just spotting)
• High androgen ("male hormone") levels, like testosterone
• excessive facial and/or body hair (hirsutism)
• cystic acne and/or a tendency to boil-like sores (sebaceous cysts) under the skin
• male-pattern balding on the head (alopecia androgenetica)
• Cystic ovaries in some women (but not all)
• difficulty ovulating, which causes the irregular or long menstrual cycles
• total absence of ovulation in some, intermittent ovulation or "weak" ovulation in others
• Problems with Insulin Resistance
• strong insulin resistance (difficulty utilizing the insulin present)
• high insulin levels to compensate for the insulin resistance (hyperinsulinemia)
• obesity and/or history of unexplained significant weight gain
• great difficulty losing weight and keeping it off
• dark velvety patches of skin on the armpits, neck, or groin (acanthosis nigricans )
• body tags/little flaps of excess skin on the body (acrochordons)
• Hormonal Disturbances and Fertility Issues
• low progesterone levels and estrogen dominance
• difficulty achieving pregnancy because of hormone imbalances
• higher rate of miscarriage early in pregnancy
• Metabolic abnormalities
• higher rates of glucose intolerance and diabetes, often at early ages
• high "bad" cholesterol (LDL), and low "good" cholesterol (HDL)
• high triglycerides
• Long-Term Health Issues
• a tendency towards high blood pressure at some point
• higher rates of heart disease later in life
• higher rates of endometrial cancer later in life, possibly other cancers too
• possibly a tendency towards depression and/or anxiety

This is not an exclusive list of symptoms; there may be others as well, including a tendency towards Irritable Bowel Syndrome (IBS) and/or gluten intolerance, Chronic Fatigue Syndrome, Sleep Apnea, Fibromyalgia, or auto-immune diseases like Hashimoto's Thyroiditis.  However, because PCOS is often accompanied by co-morbidities (other conditions), it is not always easy to distinguish what is a symptom of PCOS itself versus a symptom of a co-morbidity, and the validity of these other conditions as tied to PCOS has been questioned.

PCOS is a Syndrome

It's very important to remember that PCOS is a syndrome, which means that not every symptom must be present in order to diagnose the condition.

The two symptoms considered most important to this condition include evidence of menstrual difficulties (past or present), and symptoms of androgen excess (like hirsutism, thinning hair, or cystic acne).

These are often accompanied by signs of insulin resistance (like acanthosis nigricans, body tags, or metabolic abnormalities like high blood sugar or high cholesterol). 

Cystic ovaries used to be considered central to the diagnosis of PCOS, but are now considered less definitive, as some women with cystic ovaries do not have other symptoms of PCOS, and some women with strong symptoms of androgen excess do not present with cystic ovaries.  Therefore, the importance of cystic ovaries is debated, but is still used at times.

Remember also that PCOS symptoms cross a wide spectrum of type and severity.  This is why its diagnosis is so difficult at times.

Menstrual issues are very common in PCOS but vary in scope.  Some women skip only an occasional period, while others skip constantly (or have few or no periods). Some instead have long cycles (more than 35 days); some have excessively heavy periods, or may have spotting in the middle of a cycle.

Some women have great difficulty getting pregnant, some have difficulty staying pregnant, while still others do not have trouble with either fertility or miscarriage.  Some providers consider anovulation and fertility issues absolutely central to the diagnosis of PCOS (and will not diagnose it without these), while other providers have a more flexible definition.

The majority of women with PCOS have issues with hirsutism (extra facial or body hair), but not all do.  Some have lots of skin issues (including cystic acne, sebaceous cysts/boils, and/or hair loss), some don't.  Many women with PCOS tend to be heavy, but not all are.

So as you can see, PCOS is not a clear-cut, black-and-white condition, and its presentation varies a lot. 

Generally speaking, the more symptoms you have, the more severe the PCOS ─ but not always. And women without a lot of symptoms may still have PCOS.

Many symptomatic women are never diagnosed because they don't have enough symptoms or the right symptoms to meet official diagnostic criteria.  Many have difficulty getting diagnosed because of the relative lack of understanding about PCOS in the medical community, or the tendency to blame every problem of fat women on obesity alone.  As a result, PCOS is often underdiagnosed.

On the other hand, sometimes care providers use PCOS as a catch-all diagnosis for every problem a fat woman experiences, without bothering to investigate other possible causes. So PCOS has the unenviable distinction of being both underdiagnosed and overdiagnosed. 

In women with a lot of symptoms, the diagnosis is pretty clear, but in women without severe, classic symptoms, the diagnosis can be much harder to make.  This is part of what makes this condition so difficult.

Below you can find a few links to further resources about PCOS; feel free to share more in the comments section. Next time, we'll discuss how PCOS often presents in women and what it means to them. Then we'll talk about its testing, diagnosis and controversies. Later, we'll cover how it affects pregnancy, breastfeeding, menopause, and long-term health.

(Note: Some women with PCOS are very well-read about the condition. Feel free to add in clarifications, further resources, links, and other thoughts about PCOS in the comments section. I encourage everyone to do their own research about PCOS, but remember that information about PCOS can vary greatly from source to source, and not all experts agree on its cause, presentation, or best treatment.)

Links to Further Information About PCOS*

General Information About PCOS

• http://www.pcosupport.org/
• http://www.soulcysters.com/
• http://www.womenshealth.gov/publications/our-publications/fact-sheet/polycystic-ovary-syndrome.cfm
• http://women.webmd.com/tc/polycystic-ovary-syndrome-pcos-topic-overview
• http://labtestsonline.org/understanding/conditions/pcos/?start=0
• http://labtestsonline.org/understanding/conditions/pcos/?start=1
• http://emedicine.medscape.com/article/924698-overview
• http://www.isletsofhope.com/diabetes/disorders/polycystic_ovarian_syndrome_pcos_1.html
• http://www.coloradoinfertilitydoctors.com/pcos.shtml
• http://emedicine.medscape.com/article/256806-overview
• http://www.infertilityspecialist.com/pcos-minnassian.html

*Remember, these resources are generally not weight-neutral.

More on Unexplained Weight Gain

Thank you to everyone who replied to my question about your experiences with unexplained weight gain....i.e. weight gain that can't be tied to specific outside causes like a side effect of meds or birth control, etc. 

I personally experienced a major unexplained gain like this, and I was curious to see how many others had also experienced it.  Thank you for sharing your stories both in comments and in private emails; it's reassuring to know that many others have experienced it too.

Honestly, I thought our stories would all be very much alike, and for the most part there are common threads running through many of them. But while there were some similarities, there were also differences at times.  So my speculation is that while most stories are related to a couple of common paths, there can also be other paths to major weight gain, paths we have yet to discover. 

But first, let's talk about the most common paths.

Possible Causes of Unexplained Weight Gain

The most common causes of unexplained weight gain seem to be two-fold:

• Hypothyroidism (overt or borderline)
• Polycystic Ovarian Syndrome (PCOS). 

(Since I'm about to start a new series about PCOS, I was particularly interested to hear about weight gains associated with that one.)

These two causes seemed to be echoed in the stories sent in.  Most gains in the stories were later discovered to be associated with hypothyroidism or PCOS.  Many of the stories showed how hard it can be to get major gains diagnosed and taken seriously.

But it's not always clear what causes a major weight gain; it's not always due to PCOS and/or hypothyroidism. Best guess is that there is a complex interplay of hormones and metabolic issues, many of which we probably haven't discovered yet. The stories people shared made it clear that sometimes there seems to be something else going on too, something we can't put our finger on. 
My top suspects for unexplained weight gain include adrenal issues, insulin-related issues, and perhaps pituitary issues (since that's the "master gland" that controls everything else). But who knows?   The only thing that is clear is that we have much more to learn about the issue.

According to online sources, other possibilities for unexplained weight gain include:

• Cushing's Syndrome (body produces too much cortisol, which tends to cause weight gain)
• Adrenal or Ovarian Tumors (disturb hormone production, which can cause weight gain)
• Food Allergies/Sensitivities (some people experience weight gain with food sensitivities)
• Lack of Sleep/Sleep Apena (can cause biochemical changes which impact weight)
• Stress (chronic stress increases cortisol production, which tends to cause weight gain)
• Blood Sugar Issues (reactive hypoglycemia, unstable blood sugar, and too much insulin)

It's also worth noting that many medications do result in unexplained weight gain, including some forms of birth control, corticosteroids, antidepressants, anti-seizure meds, heartburn meds, migraine meds, blood pressure meds, and certain diabetes meds.  And of course, fluid retention due to edema, kidney issues, or congestive heart failure can be serious source of very sudden gains. 

But what we are most concerned about here is unexplained weight gain ─ weight gain not clearly related to outside causes like medications, quitting smoking, weight gain left after pregnancy, obvious disease, or poor eating. 

My Story

For me personally, my unexplained gain was probably due to a combination of both hypothyroidism and PCOS at once.  Although always considered "overweight" by the charts, I was never that heavy as a child or young teen ─ I was more of an "in-betweenie." But that changed a few years after puberty.

My large weight gain started in my mid-to-late teens, just after my PCOS symptoms began appearing, and worsened as my PCOS symptoms worsened.  By my early 20s, I had gained a total of about 100 lbs. or so, despite everything I did to try to reverse it.  That's one heck of a weight gain, and that was despite working extremely hard to try and reverse it.

Yet I couldn't get a doctor to take any possible metabolic causes seriously. When I pushed for testing to see what was going on, I was told I was "looking for an excuse for being fat."  Although I eventually got tested and we found "borderline" thyroid levels, no doctors were willing to treat that, despite my overwhelming symptoms of hypothyroidism. And not one doctor ever mentioned the possibility of PCOS to me. 

However, they were all happy to give me diet advice, telling me to do things I was already doing.  When I would try to tell them that, they wouldn't believe me.  So I quit going to doctors to try and figure it out.

Eventually, the weight gain slowed and stopped, then went into a pattern of fluctuating. In time, I finally found a doctor willing to do a trial of thyroid meds, based on my symptoms and my "borderline" labs.  Oh, I felt soooo much better!  After that, my weight was so much more stable. And treating the hypothyroidism seemed to lessen many of my PCOS symptoms.  Truly, it was a "win win" situation for me, even though it didn't make me skinny.

Of course, TSH diagnostic levels are controversial; different providers use different scales to diagnose with, and many care providers do not believe in treating "borderline" levels.  However, I'm a total believer in treating borderline numbers in symptomatic patients now.  In my opinion, too many people have been helped by it to ignore this possibility.  [Always ask for your exact results and the scale they used to diagnose you, and then research the controversy over diagnostic ranges; don't just accept the care provider's word about your thyroid levels being "normal."]

But that's my story.  It has many things in common with other people's stories, including the difficulty in getting care providers to consider such gains as anything other than sloth and gluttony.  But of course, not every story is exactly the same, and your causes may be different than mine.

Conclusion

Large, unexplained weight gains are certainly not unusual among people of size.  Most often, they seem to be connected to borderline cases of hypothyroidism and/or PCOS, but there are probably other causes as well, things doctors fail to consider or don't yet understand.

We need to get doctors to take unexplained gains more seriously so we stop blaming everything on over-indulgence, laziness, and eating disorders.  Those are relevant sometimes, but there has to be some sort of physiologic basis for why some people are so susceptible to gains that are unresponsive to normal nutrition and exercise.

I also wish we could offer better advice to those who experience this distressing situation.  All I can say to someone experiencing it is that you are not alone, there are others who have experienced large gains like this, and it doesn't mean you are a "bad" or "weak" person.  It's just a mystery that we don't understand yet.

Although the understandable response to a large weight gain is to try to lose that weight, it's important to remember that this may not work for you long-term if the underlying cause of the gain isn't discovered and addressed. That's why I encourage people to continue to push to investigate possible physiological causes, and to not be afraid to switch to a new care provider if the old one is unresponsive to your concerns.

And remember that the diet you use to lose the extra gain may end up resulting in even more gain in the long run, even when you only do "healthy" diets and exercise and "lifestyle changes."  All too often, the things you do to deal with the gain only end up amplifying the gain.  How is that advantageous?

So it's not easy to know what the best thing to do is in the face of an unexplained gain like this ─ live with the gain as is and put up with the discomforts and potential health risks, or try to lose the extra weight and risk ending up heavier than you began.

I would not presume to tell you what you should or should not do with your own body; you do what seems to make sense for your body and your situation.  However, I would point out that weight loss is not your only choice. 

A gain doesn't have to mean giving up and being unhealthy; nor does it mean you have to punish your body through starvation, mutilating surgery, or other extreme measures. You can focus on being healthy in nutrition and exercise without centering that on weight loss.  That way, you pursue better health while avoiding worsening the situation via a lot of yo-yoing.

Unexplained weight gains are so mysterious and frustrating.  They are not universal among people of size, but they are pretty common.  Wouldn't it be nice if care providers would actually believe us when we say something is wrong, or better yet, focus on trying to understand these gains better so we could prevent them in the first place?

Have You Had Unexplained Weight Gain?

Have you experienced a significant, unexplained weight gain during your life?

In other words, a weight gain clearly not related to other possible causes like poor eating habits, a side effect of a medication, aftereffect of a major diet, an eating disorder, etc.?  If so, would you be willing to share your story?

I have a reason for asking but don't want to explain yet.  I just would like to hear your stories; what age you were, how much weight you gained, what you tried to do about it, etc.  Be brief, but include whatever you think is most relevant to your situation.

Share your stories in the comments section here, or if you prefer to share more privately, send me an email with a brief summary of your story.

Thank you for sharing.  More on why I'm asking this later.