Tuesday, September 20, 2011

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.)

25 comments:

Evenspor said...

Do you know: could having had kids cause/enhance some symptoms?

SeasideBride said...

Thank you very much for this post. I look forward to reading future posts as well. I was recently diagnosed with PCOS. After years of complaining to my Drs. and hearing nothing but exercise more and eat less, I finally found my current OB/GYN who knew immediately that I was suffering from PCOS. This is particularly relevant now that my husband and I want to start a family. At this point I'm not sure what the extent of my challenges will be, but I am excited to read your FA point of view on the syndrome. Thanks again!!

Anonymous said...

I'm really looking forward to this series. I've been diagnosed with PCOS and then undiagnosed and then told that my diagnosis wasn't accurate and then told if my periods are fine, why should I care anymore. At this point I don't know what, if anything I should be doing about it.

NotBlueAtAll said...

Thank you so much for this series! I know many women with PCOS, but never considered it a possibility for me, until now. I have longer cycles (around 34-35 days), I get sebaceous cysts...I'm wondering now about the tumor on my adrenal gland when I was 16. Many tests, no answers, then it shrank and they/I forgot all about it. Certainly unexplained weight gain in my early twenties, but I chalked it up to genes. Ugh! I wish I had health insurance so I could get this checked out. But thank you so much for this information. You've put it in a way I can understand, for the first time! =0)

Anonymous said...

I know PCOS is related to weight and obesity, but can someone clarify: does PCOS lead to weight gain/difficulty losing weight, or does obesity/fatness lead to PCOS?

I find it confusing that info on PCOS lists weight gain as a symptom, which seems to suggest that PCOS causes it, but many resources suggest losing weight as a treatment--which seems like it would be difficult if the underlying disorder is making weight loss particularly difficult.

Consider hirsuitism - it's a symptom of PCOS, listed right alongside obesity, but no one suggests shaving as a *treatment* of PCOS. Can anyone clarify the relationship?

Lillian said...

I'm now going through menopause, irregular, infrequent periods. I'm 47. Before, I had light periods, to very little as only spotting. I have male pattern baldness, extra facial and body hair since I was in my teens.

I had no problem getting pregnant. I have trouble losing weight even with reducing my calories unless I'm under great stress. To keep weight off, I had to exercise four hours a day. The weight came back on quickly without me eating anymore.

I've never had any doctor suggest that could have this problem. Then, I don't talk to doctors about a non problem like very light periods since I had no problem getting pregnant when I wanted a baby. I didn't know there was a condition that would cause my hairiness and thin hair on top of my head until I started reading about this.

I don't know what this could do for me since my cholesterol numbers and fasting glucose are good.

living400lbs said...

I'm heavy, have irregular / long periods, occasional acne, slight facial hair, skin tags, and slight dark patches under my arms. OTOH my cholesterol and glucose are fine and sleep apnea is controlled by CPAP.

So, yes, it's possible I have PCOS, but I'm not sure *what to do about it*, y'know?

Cassandra said...

I was diagnosed with PCOS when I was about 16. Went in to figure out why I hadn't had a period in 5 months, a bunch of stupid crap happened with the doctors, finally got sent for a ct scan of my ovaries and found one was filled with cysts. Shortly after, one burst and I went to the ER, where they confirmed the existence of many cysts. Tried to go on Metformin, but even on the extended release low dose version I couldn't keep my blood sugar up high enough to function. Cut to shortly after my 22nd birthday and I decide to go off birth control because I couldn't stand what the pill was doing to my body. And after all the bullshit doctors were telling me about how I would basically be infertile, I didn't bother to find alternative BC. Then to our great shock and surprise, I didn't even make it to my next period before I got pregnant! 20 week ultrasound shows I have 1 single tiny cyst in 1 ovary. Never did a damn thing different in all those years and my weight kept going up. Gave birth and now my periods are perfectly regular.

penguinlady said...

I would like to add, from my experience, that fertility treatment with PCOS can be difficult because of the low progesterone/high estrogen. I had another issue (blocked fallopian tubes) and had to do IVF, and the PCOS made it quite tricky to get the correct doses of hormones to make my eggs develop. As you say, probably not applicable to everyone, but I wanted to put it out there for informational purposes since the doctors seemed to feel it was "typical" for women with PCOS to have that problem.

lifeonfats said...

I was diagnosed with PCOS this spring after complaining to my OB-GYN about heavy periods and clotting. My thyroid was tested twice and came back normal both times. I was also checked for uterine cancer and fibroids but those also came out negative.

I have quite a few of the symptoms of PCOS---spotting between periods, irregular periods (my last one lasted almost two weeks---while I was still on the pill), sudden acne, occasional IBS, and dark patches of skin, but on my ankles.

I don't plan to have children so infertility is not an issue for me. But I really want to get these irregular periods under control. I have a feeling my birth control is not that effective, despite not taking the placebos as instructed.
One good thing is that one of the doctors did say that weight loss for PCOS was extremely difficult so hopefully I won't be pressured to diet as the only way to manage the disease.

Orodemniades said...

Ah, PCOS, my trusty little friend. The kicker is that if I had been properly diagnosed in my twenties, or hell, earlier, maybe I wouldn't have gone through such agonies later on, like, y'know, severe depression and infertility. But hey, that's what IVF is for.

feaien said...

I was diagnosed with PCOS several years ago, and i think you've done a good job on this so far. My advice to anyone with PCOS is to find a good doctor who is willing to listen to your input and doesn't make you feel like you are stupid. I've had bad experiences with a doctor who got angry when I knew more than he did! Do your own research, too. There is plenty of information available online.

Tigerlilly said...

I urge anyone who thinks they may have PCOS to find a doctor who will listen, especially if they have aspirations of having children. I have it, have had it for so long, and now here I am at 39, childless, fat hairy where I shouldn't be and balding where I shouldn't be, and because I'm fat I can't get proper treatment for the PCOS OR the infertility. I'm practically not even human anymore.

PCOS has ruined my life; don't let it ruin yours too.

wriggles said...

This is an interesting post about slim women and PCOS. It does advocate weight loss and talks about not gaining and why me lurd I'm not fat/eat well etc., But it might be worth looking over for comparison.

two bits said...

I was diagnosed about a year ago. Too bad my primary care dr ran all sorts of thyroid/hormone/diabetes tests over the last 4 years with no diagnosis. After hearing about PCOS two years ago while researching some health issues (like losing my hair!), I asked my gyn specifically about testing. She wouldn't test for it or even give me a referral to a specialist unless I couldn't conceive for a year (uh, hello, fertility is only one part of the problem) even though I wasn't interested in having kids at that point in time. Needless to say I have a new doctor now who takes my concerns seriously. I finally went on my own to make an appointment with a reproductive endocrinologist when I was ready to start a family. He took one look at me and my list of symptoms before stating he was 99% sure PCOS was the problem. He ran tests that same day and had a confirmed diagnosis within a week. After some changes in diet and new meds I started losing weight more easily than in the past and was able to conceive within a few months. I'm still pissed that I should have had a diagnosis years ago, and possibly felt better about myself in the process. Now I'm stuck with thinning hair, body hair and scarring from bad skin. I have yet to see any research into treating PCOS & spontaneously regrowing hair . :(

nsv said...

Can I ask whether a reproductive endocrinologist is the best choice of providers for someone wondering about PCOS if that person is NOT interested in having children - or, as in my case, is done having children?

feaien said...

Nsv: I was seeing an endochrine specialist when I was a teen. I definitely wasn't interested in kids then. I felt like he was the best doctor, and most knowledgeable. I'd still be seeing him if I hadn't lost my health insurance.

Ashley said...

I was diagnosed with PCOS 3 years ago and have one of the more unusual constellation of symptoms: insulin resistance, infertility/miscarriages, ovarian cysts but regular cycles and minimal androgen characteristics. What I find really frustrating is how little the PCOS world talks about the non-weight gain symptoms of IR. That was my biggest problem and it just about ruined my life. ANYWAYS...

My understanding is that weight loss in fat PCOSers is associated with increased fertility, but doesn't actually cause it. My theory is that if you can address the underlying insulin issues you're more likely to lose weight (I didn't, but the gain stopped) and you become fertile (yup, that part's true for me). It also seems to me that high levels of testosterone is much more common in thin PCOSers (I kind of hate the term 'cysters'), and occasionally a much harder time getting pregnant than the fat PCOSers. That's just my observation from reading a ton of books on PCOS 3 years ago and lots of forum visits, etc.

monocot said...

I have PCOS and hypothyroid. Yes some fat people really do have *gasp* hormonal issues that cause weight gain. :> Up until my teenage years I was normal weight. In highschool despite being in karate and working out 4 times a week in 2 hr sessions, I started battling my weight, and it only got worse once I got into college and was no longer able to keep up the grueling workouts with my study schedule. I had gained 100 lbs by the time I was 19.

To the question about losing weight and the syndrome causing weight gain. Yes it is more difficult to lose weight with PCOS, but the symptoms of PCOS are worse at higher weights for many people. (kinda a cruddy catch-22)

My first child required a team of fertility drs to conceive, my second was conceived naturally, and I'm pretty sure that is because I was working with a weight loss dr at the time and had lost a significant amount of weight in prep.

In my experience, even if you aren't working on conceiving,a good RE will at least know more about PCOS than the average dr. I don't know if that is true of other endocrinologists.

I was lucky when I moved to Colorado 6 years ago that my family dr put me in touch with a RE here who specialized in a PCOS, so she was able to get me diagnosed and started on treatment quickly. I had suspected it previously from reading symptom lists, but I didn't find anyone when I was living in Florida who took me seriously about it.

I still have a long road in the management of the condition, but at least now come to it from a position of knowledge.

girl, emphasis on the L said...

I wanted to respond to this anonymous comment based on personal experience:
"I know PCOS is related to weight and obesity, but can someone clarify: does PCOS lead to weight gain/difficulty losing weight, or does obesity/fatness lead to PCOS?

I find it confusing that info on PCOS lists weight gain as a symptom, which seems to suggest that PCOS causes it, but many resources suggest losing weight as a treatment--which seems like it would be difficult if the underlying disorder is making weight loss particularly difficult."

When I was first diagnosed with PCOS, I was not "obese". I had been chubby all my life, and didn't start having periods until my sophomore year in high school (which is when i was diagnosed). My symptoms, very painful heavy irregular periods, hirsutism, and acne.

After doing tests and ultrasounds I was diagnosed with PCOS, and over the course of the past 10 years i have gained 125 lbs.
I have tried many "treatments" for PCOS, insulin resistance medications, diet changes, exercise. This included eating a 1200 calorie diet and exercising about 10 hours a week for almost a year. My body doesn't lose weight.

They say the symptoms are reduced if you lose weight, but the symptoms make it pretty much impossible to lose weight, so to me it seems like more of a guess.

Kristen said...

I'm really looking forward to this series, not least of which because I love the way you present information and research with such warmth and compassion. I can already tell that this is going to be a fabulous resource.

On another note, I can't tell you how many times I've wanted to scream after hearing yet another woman reporting that her doctor wouldn't listen to her symptoms and/or was dismissive of all PCOS diagnoses in general. GRRRR.

flyabuv said...

Diagnosed in 2008. So annoyed that in high school I had cysts and irregular periods and the dr just put me on the birth control pill. I researched it a lot in 2008/09 when trying to get pregnant (have a 1.5 yo girl now!) so this is all from memory.
PCOS is usually caused by Insulin Resistance. It could be an evolutionary thing where we would actually still do well in a time of famine and still be able to have babies even after losing a lot of weight. So when we follow a SAD (Standard American Diet) we tend to gain weight. Here are some AWESOME links that have helped me a lot. Number one thing to help with symptoms: cut down on sugars and carbs which is the hardest thing for us because are body craves those things most of the time. So annoying.
Insulin Resistance Diet- First chapter gives a lot of info on how IR works and promotes always eating a protein and carb in the same meal as to not get a blood sugar spike.
http://soulcysters.net/ - great forum for those trying to get pregnant. One tip that I used was using progesterone cream during 1st trimester to avoid miscarriage.
Mothering.com post – great info/anecdote “Insulin is a hormone produced by the pancreas. Insulin picks up glucose from the blood stream, carries it to cells and knocks on the cell door. The cell opens up for the insulin and takes the glucose from the insulin. The cell uses the glucose for fuel. In people with PCOS/insulin resistance, the cell refuses to open up for the insulin. The result is that every time you eat anything with glucose the glucose builds up in the blood stream. Your body then realizes that there is way too much in the blood and triggers the pancreas to make more insulin to lower the glucose load. The pancreas sends out more insulin which tries to deliver the glucose to the cells who won’t answer the door. This cycle continues every time you eat any glucose. Eventually the glucose builds and your body stores the excess directly into fat cells.”
Eat Fat Lose Fat – Good book, also look into Nourishing Traditions. Encourages lots of fat, calories, but very low on simple carbs and sugars.

Anonymous said...

I thank you sincerely for bringing up this important topic. I have been trying to conceive unsuccessfully for over 2 years. I was 'officially' diagnosed with PCOS about 6 months ago. I do not believe I have it - I have zero symptoms of the syndrome - and believe you me, I had a LOT of tests done.

I have (and have always had) regular cycles - you can practically set your clock by them. My androgen levels are normal. I do not have cystic ovaries. I was tested repeatedly for insulin resistance, but don't have it. I have textbook normal triglycerides, cholesterol and blood pressure.

After running thousands of dollars worth of tests that were not covered by insurance, my RE said, well, we've ruled out this, this, this, this and this, so your diagnosis is PCOS. I believe I only received that diagnosis because I am overweight, but that I do not have PCOS. Even the way the diagnosis was given to me doesn't make sense - as though PCOS is what you get diagnosed with when they've ruled out a bunch of other stuff.

It's so incredibly frustrating to be handed a diagnosis that so obviously doesn't fit. And then being told to lose some weight of course to 'fix' it.

lolie jane said...

Thank you for doing this series. I have PCOS and because of it I am quite heavy. I too have noticed the push in losing weight on all PCOS related sites. I went to see a fertility specialist this morning, and she wouldn't even take on my case because my BMI was over 30! I'm glad there is more awareness about PCOS and I thank you for aiding in that.

Jay said...

Nice, really comprehensive post!PCOS can be a bitch to diagnose. I 'diagnosed' myself with PCOS (by the Rotterdam Critreia) after 2 pregnancy losses, though mine is the sort of presentation that is utterly confounding.

In the 'For' column:
Multi-follicular ovaries (AFC= 30+)
High AMH (over 5)
Elevated DHEAS (over 250)
Very slightly hirsute(by the Ferriman Gallway scoring system)

In the 'against' column:
No insulin resistance
Am thin, no issues with weight gain
Low testosterone
Normal LH:FSH ratio
excellent,albeit late (day 20) ovulations.

All that was 'wrong' with me was that I was vitamin D3 deficient (over 40% of women with PCOS have this issue) and I had mildly elevated anti-thyroid antibodies. Most doctors refuse to treat me for PCOS, because they think I don't have it, or rather, it is not causing any issues with me. But then, I do have the issue of recurrent (do 2 losses qualify?) pregnancy loss.

In the end, I think taking vitamin D3 helped me tremendously. I would strongly urge anybody with PCOS to check this out!