We Remember: Pregnancy and Infant Loss

October is Pregnancy and Infant Loss Awareness Month. I have a number of friends who have lost babies to miscarriage, stillbirth, or early death. It's more common than you might think. My heart always is heavy when I think of the babies missing in their lives, of who these babies might have become.

If you know someone who has lost a baby to miscarriage, stillbirth, or early infant death, please give them sympathy and a listening ear. Don't tell them how to feel or second-guess their situation, but just listen. If the time seems right, ask them how they are doing or offer to just hold them. They may not want to grieve in front of others, so a card or a message of love and support can be helpful yet still allow them to grieve in private. Take your cue from the mother as to what kind of support she needs. Don't assume she'll be "over it" in a month or two. That loss will likely live on in her heart forever.

We remember:

the babies born sleepingthose we carried,
but never held,
those we held,but could not take home.those who came home,
but could not stay.

Pregnancy and Infant Loss Awareness Month

October is Pregnancy and Infant Loss Awareness Month.

Sadly, I have had a number of dear friends and acquaintances who have had miscarriages, whose babies were born still, or who did not live through their first year. These losses have left their footprints in my heart too.

You simply cannot work in the birth field for 20+ years and not know people whose precious babies have died. Miscarriage is more common than you might think, and while stillbirth and infant mortality is rare, it does still happen. These losses are absolutely devastating and go unspoken of far too often.

To any in my reading audience who might have experienced a loss like these, my heart goes out to you. To my dear friends who have been through this difficult experience, I hold you and your babies forever in my heart. It may seem like no one remembers, but you might be surprised how often I think of them, and you too. So much love to you.

A Woman Your Size Has No Business Being Pregnant

Although this past year's Turkey Awards went to ignorance around PCOS, we have to give a Dishonorable Mention Turkey Award to a recent entry at My OB Said What?!?:

“Why are you crying? It’s not like you lost anything. A woman your size has no business being pregnant anyway.” -ER nurse to an overweight woman suffering the miscarriage of her third child

Really? REALLY?!?!

It's hard to believe a healthcare worker would say say something this insensitive and unprofessional to any woman in the middle of losing her baby, but sometimes they do. Healthcare professionals are human like anyone else, of course, and have rough days where they find it hard to be empathetic....but even in the middle of a bad day, they need to remember the wisdom of silence when you can't quite muster up empathy.

There is nothing quite so tender as a miscarriage or stillbirth. Medical professionals need to remember that just because a miscarriage is early doesn't mean it's not still a loss. Even if an early miscarriage doesn't seem like a loss to them, they need to honor the fact that it feels like a loss to THAT patient.

And telling someone not to cry when they are in the middle of losing someone precious to them shows a tremendous lack of empathy. Most likely it comes from the fact that the person's grief is making the medical professional uncomfortable and they don't know how to deal with it, so they belittle the person's pain and tell them to just get over it.

But it's not supposed to be about caregiver's comfort level, it's about the PATIENT'S comfort level and needs, and they need to remember that in their dealings with patients. You don't have to feel things the same as your patients, but you need to be respectful of the patient's feelings, even if you don't agree with them, aren't what you personally would feel, or make you uncomfortable.

But the thing that bothers me the most about this entry is the idea that women of size "have no business being pregnant."

That's absolute nonsense, yet it's a very common feeling among many medical professionals, due to the hyperbole around risks in women of size. Some have been taught that fat women are at SUCH a high risk that they have come to believe that fat women can't possibly have a healthy pregnancy or a healthy baby, and that's simply not true.

Many of us DO have healthy pregnancies and healthy babies, and it is NOT an irresponsible act to have a baby at a larger size.

Yes, women of size are at increased risk for some complications, but being at increased risk does not mean that complications will happen, nor does facing potential risk disqualify you from motherhood.

All kinds of women are at increased risk for complications due to various factors (age, family history, racial or ethnic status, various health conditions) but usually are not told that they have "no business being pregnant." Their risk status is acknowledged and counseling toward risk mitigation is given. The same can be done for women of size.

In dealing with women with risk factors, the focus should be on helping them have the healthiest pregnancy possible, even while acknowledging possible complications. Many caregivers are mature enough to recognize that plenty of women will have perfectly fine pregnancies and healthy babies despite having risk factors.

And in those who do experience complications, mature caregivers realize that the emphasis should be on kind and empathetic care in helping the woman towards the best possible outcome, not on scolding and judgment.

Although I'm sure there are women with various other risk factors who have faced reproductive policing, most of the time these days it's considered wrong to question a woman's basic right to motherhood, even in a mother at risk for complications. Yet reproductive policing and shaming seems to be considered acceptable behavior in the medical community towards "obese" women.

Sorry, but NO ONE has the right to forbid reproduction. The government, medical authorities......history has shown time and again that these people should NOT be the gatekeepers of reproduction. Whether to have a baby is a decision for the woman and her partner to make and no one else.

Couples should be counseled (with compassion, not scare tactics) about their risk status and possible complications, yes, but if they decide to move ahead anyhow, they should be treated with respect.

The ability to reproduce is one of the basic rights of people in society; the state and/or medical caregivers have NO business trying to govern that. 

Nor should women be subject to shaming or scolding for the simple act of wanting to have a family. 

That applies just as much to women of size as well as to women in any other group.

Miscarriage and Obesity: Confusing Causality and Correlation Once Again

"Since you are overweight, I don't want you to get excited about this pregnancy because you'll probably miscarry."  -OB to mother at first prenatal appointment, documented on myobsaidwhat?!?

Can you believe some doctor told this to a woman at her first prenatal appointment? Gees, way to ruin this poor woman's joy and excitement over her pregnancy!

This is yet another example of a doctor mentally inflating the risks around obesity and pregnancy.  This is a common occurrence these days because of the obesity hysteridemic.  Women are not being given realistic summaries about risks associated with obesity and pregnancy, but instead are being given shaming tactics and doom-and-gloom predictions that greatly exaggerate their risks.

Miscarriage is one of the many things fat women are being scared with. I am hearing about more and more fat women being told that they are very likely to miscarry, or that if they did miscarry, their miscarriage was caused by their obesity.

Here are several more entries over at My OB Said WHAT!?! showing how fat women are often blamed for their miscarriages. Assumptions are often made about how the fat woman MUST be eating in order to be fat, and the woman is shamed and blamed, right at the time when she most needs love and support.

The first entry:

“New studies are showing that obesity causes miscarriage.” -Midwife to larger sized mother at prenatal who had previously had a miscarriage and was now pregnant again.

The second entry:

“You’re so fat, what did you expect? Obese women have no business getting pregnant anyway.” – Nurse at OB’s office, following a miscarriage at 14 weeks

Yet another entry:

“Stop trying so hard to get pregnant and focus that energy on eating healthy- your chance of miscarrying is higher anyway because you’re obese” — Midwife to mother at 15 pounds overweight three weeks after miscarrying with a blighted ovum.

The next entry is from a vegetarian who does not eat fast food. She was told:

“The reason you had a miscarriage is because you are fat. You will never carry a pregnancy to term unless you stop eating Big Macs.” – Midwife

Once again, fatness is blamed for anything bad that happens and fat women are not believed about their habits, just assumed to be eating constant junk food.  After all, that's the only reason why anyone might be fat, right?

Examining the Argument

Women are being blamed for their miscarriages and being told half-truths about it.  Once again, some care providers are confusing correlation and causality.

Yes, some research shows a higher miscarriage rate in women of size, although not all research has found this to be true.

But if there is an association, is it their obesity that is causing these miscarriages, or is something associated with obesity resulting in miscarriage?

The fact is, no one really understands what causes some miscarriages. Most miscarriages are due to chromosomal abnormalities and the embryo is miscarried early.  Sometimes, though, the answer is not clear-cut and no one knows why a miscarriage occurs.

But consider ─ if obesity caused miscarriage, then no fat woman would likely carry a pregnancy to term, and yet many of us do.  Furthermore, many of us who are fat have never had a miscarriage at all.  The association has to be more complex.

Yes, there is a higher rate of miscarriage in "obese" women. HOWEVER, there's a giant confounding factor there with PolyCystic Ovarian Syndrome (PCOS).

Many women of size have PCOS, and the hormone imbalances of PCOS can result in an increased rate of miscarriage.  Does the obesity cause the miscarriage or does the PCOS? This is an important confounding factor, and rarely is it controlled for in these obesity and miscarriage studies.

A few studies discuss the possibility of PCOS influencing miscarriage rates in obese women, but regularly discount its importance. However, many women with PCOS have great difficulty getting diagnosed (especially those with milder or atypical cases) and so the role of PCOS is probably underestimated in these studies.

Might there still be an independent effect of obesity (or something else associated with obesity) even after PCOS is accounted for?  Yes, it's possible.  But since not every study finds an increased risk for miscarriage among obese women, and since many obese women carry to term without any problems, you cannot conclude the obesity causes miscarriage.

To tell a fat woman that her obesity caused her miscarriage is just cruel.  And furthermore, it may well be that her miscarriage was due to chromosomal abnormality, just like most other miscarriages.  There's no way to know for sure why this particular pregnancy miscarried.  To pretend otherwise is just trying to shame and blame the mother.

Unfortunately, many doctors just see a risk associated with weight, mentally inflate that risk tremendously because of all the hysteria over obesity and pregnancy, start assuming the risk is far greater than it actually is, and conflate correlation with causation while they're at it.

In other words, if something bad happens to a fat person, many care providers conclude it MUST have been because of their fatness and nothing else.

Amazing how all that obesity got passed down over the generations if fat women were truly unable to carry to term.

My Story

As a side note, I should pass on that in my first pregnancy, I experienced a lot of spotting/bleeding in the first trimester.  We saw the heartbeat and everything, but the doctor still told me I had a very high chance for miscarriage. Obviously, there was some basis for concern, giving the frequent spotting, but the doctor told me I had a 50/50 chance of miscarriage, and her tone seemed to imply that it was almost a sure thing.

Yet once the heartbeat is seen, the odds for miscarriage drop considerably.  One site says that the risk drops to about 13% in women with vaginal bleeding but in whom the heartbeat has been documented.

My chances for miscarriage were probably a lot less than 50/50, but she told me 50/50.  I think she inflated it, given my weight, even though she didn't mention weight specifically.  Her tone implied that miscarriage was practically inevitable.  She scared me out of my wits, but despite all the dire predictions, I carried the pregnancy to term, no problem.

Oh, how I wish I had known then that the risk for miscarriage dropped considerably once a heartbeat has been documented.  It's not a guarantee, and there is still room for concern...but neither is it as chancy as many doctors think it is, even in fat women.

Although my doctor never specifically tied her prediction to my weight out loud, I think it influenced her prediction.  And her prediction certainly caused me a great deal of anxiety.  Fortunately, all was well, and that "50/50 chance of miscarriage" is learning to drive now.

The Fall-Out from the Blame Game

Few things are more gut-wrenching than when a woman loses her baby. Even when the baby is "just" a few weeks' gestation, miscarriage can be an absolutely devastating experience, and it leaves the woman feeling particularly vulnerable emotionally.

How incredibly heinous it is, then, for care providers to be telling fat women that their obesity caused their miscarriage when we don't in fact know whether that is true.

And of course, how heartless and disingenuous to tell women that unless they lose weight, they'll never carry a pregnancy to term.  Somehow, other fat women have carried a pregnancy to term without losing weight first. This is just another way to try and medically bully a woman into drastic weight loss.

To focus on a woman's weight in the middle or aftermath of a miscarriage is just cruel, yet many providers do just that, like in this woman's story:

“Oh my goodness! Do you know you’re overweight? Have you tried to diet and exercise??" – OB immediately upon entering the room and meeting a mother for the first time. The mother was in the process of miscarrying a 16 week pregnancy.

Care providers must start realizing the power of their words during tragic losses like these.  Cruel or insensitive words during difficult times can leave particularly deep and scarring emotional wounds.

And care providers need to recognize that careless or harsh comments about weight often lead to disordered eating and compulsive exercise behaviors in patients, like in this mother:

About eighteen months ago, I got pregnant. In a move that surprised both my boyfriend and me, we decided we wanted to keep the baby. Though the pregnancy was unplanned, we were really excited to become parents and the child was very much loved and wanted. When I was six and a half months pregnant, I miscarried. Since then, I’ve struggled to get out of bed. 

Not a day has gone by when I haven’t thought about who that child would have been. It was a girl. She had a name. Everyday I wake up and think, “My daughter would be six months old,” or “My daughter would maybe have started crawling today.” Sometimes, all I can think is the word daughter over and over and over. 

Of course, it seems that everyone around me is having a baby and everywhere I go all I see are babies, so I have to force myself to be happy for them and swallow how empty I feel. The truth is, I don’t feel much of anything anymore and yet, everything hurts. Most of the people in my life expect me to be over my sorrow by now. As one person pointed out, “It was only a miscarriage.” So I also feel guilty about being so stuck, grieving for a child that never was when I should just walk it off or something. 

I don’t talk very much about it. I pretend it never happened. I go to work and hang out and smile and act like everything is fine. My boyfriend has been fantastic and supportive, though I don’t think he understands how badly I’m actually doing. He wants us to get married and try for another child. He thinks this should cheer me up. It doesn’t. It makes me want to punch him in the head for not feeling the way I do. 

Then there is the reason I lost the baby. In the hospital, my doctor said he wasn’t surprised I lost the baby because my pregnancy was high risk because I was overweight. It was not an easy thing to hear that the miscarriage was my fault. Part of me thinks the doctor was a real asshole but another part of me thinks, “Maybe he was right.” It kills me to think that this was my fault, that I brought the miscarriage on myself. I can’t even breathe sometimes, I feel so guilty. When I got out of the hospital, I got a personal trainer and went on a diet and started losing weight but I’m totally out of control now. Sometimes, I don’t eat for days and then sometimes, I eat everything in sight and throw it all up. I spend hours at the gym, walking on the treadmill until I can’t lift my legs.

Or this mother (the full story from one of the entries above):

My 2nd pregnancy was a surprise and ended in miscarriage at 7 weeks. I was devastated. Somehow the loss is what triggered my husband’s readiness to officially start trying for the next baby...Thus my 3rd pregnancy began, with severe ovarian pain for many weeks. In the time before my scheduled first prenatal appointment, the midwife told me on the phone it could be an ectopic pregnancy...at the first prenatal appt...the midwife (who is also an ultrasound tech) said to me...“New studies are showing that obesity causes miscarriage.” She knew I’d just lost a baby to miscarriage a few months prior and took the opportunity while I’m laying there vulnerable with my shirt up and pants down and cold goop on my belly waiting to see if I was about to lose another baby to say this to me. I asked if she was saying that my fat killed my baby and she looked half-smug and half-sheepish as she replied that she ‘wouldn't say it didn't.’

After FINALLY confirming my baby was alive and not ectopic, the midwife launched into a 20 minute long lecture in which she told me, “I forbid you to gain any weight during this pregnancy! You know what can happen…” or she would “make” me go to the hospital to have my baby...I was so devastated and cowed by her horrible comment and constant bullying that for the duration of the pregnancy I swung wildly back and forth between binging and starving, a true eating disorder for the first time in my life. I was very depressed, constantly in a state of nervous panic, and too scared to call and ask for help when I developed a bladder infection- also the first and only bladder infection of my life.

Pregnancy #4, living baby #3, is due in 6 weeks. My current pregnancy at my first prenatal appointment, this midwife told me that she would refuse me as a client and send me to the hospital if I didn't LOSE 10 POUNDS IN A MONTH – yes while pregnant and severely sick with hyperemisis gravidarium she told me to purposely drop 10 pounds. I had just gotten my emotional eating and depression from the damage she caused last time under control and decided that for the health of my baby I would run like the wind if she treated me like that again, so when she did I dropped her – walked out before the appointment was finished and have never been back. I am now with a new birthing center, the midwives of which are supportive and praise me for my healthy eating habits and do not try to blackmail me into starving myself or losing weight during pregnancy...

I can still barely think about the things she said without crying. That was 2 1/2 years go and I’m still scarred to my soul from what she said about it being my fault for being too fat that my baby died. The pain of the loss dulls a little, but the sting of that comment still brings me to tears. No matter how many times other friends and healthcare providers tell me that most miscarriages, especially those in the first trimester, are unexplainable and happen to fat, skinny, tall, short, black, white, educated, and uneducated alike, I still cannot get the haunting pain and guilt of that comment out of my mind.

A thoughtless or blaming comment from a care provider can easily set a woman on the slippery slope to unhealthy behaviors and even an eating disorder.  Instead of helping, that is just going to add another layer of challenge for achieving a healthy pregnancy and baby someday.

Providers: When a woman loses a baby, give her sympathy and a listening ear.  That's ALL. No blaming, no shaming, no jumping to conclusions about causes.  Just LISTEN.

If she comes to you at another time and wants to explore possible causes for the miscarriage or ways to improve her chances for a term pregnancy next time, by all means discuss healthy eating and regular exercise as well as other possible factors. Promoting healthy habits is always a good idea. But don't assume that she has poor habits by virtue of her size alone, don't assume weight is the only culprit, and don't promise her that healthy habits or weight loss will result in a term pregnancy and a healthy baby.  It's just not that simple.

Concluding Thoughts

Women who experience miscarriage or stillbirth spend so much time in an agony of "what ifs" ─ did I miscarry because I had that cup of coffee, did I miscarry because I had a glass of wine before I knew I was pregnant, did I miscarry because I didn't eliminate enough stress in my life, did I miscarry because I was too fat/too skinny/too old/too young, etc.  They don't need anyone else adding to their own wildly unrealistic self-blame.

The truth is that miscarriages happen.  They happen all the time.  And no one knows why some pregnancies end in miscarriage.

If multiple repeat miscarriages happen, it can be helpful to look for possible causes (like low progesterone, PCOS, weak ovulation, high blood sugar, hormonal imbalances, a blood clotting disorder, etc.) but most of the time, there's no discernible cause.

It's true that some research suggests that obese women have a higher miscarriage rate; however, it is likely that this relationship is muddled by correlated issues like PCOS and the associated insulin resistance and hormonal differences. It is one thing to note a higher rate of miscarriage among women of size, and completely another to conclude that obesity is causing a miscarriage.

Remember, miscarriages happen all the time to women of ALL sizes and body types. To conclude that any one miscarriage happens to someone because of their certain body type or size is nonsense.

I can promise you, many other women with that particular body type or size have carried pregnancies to term before.  Why does one woman of that size or body type carry to term with no problems and others of that same size lose the pregnancy?  If the two were linked causally, that diversity of outcome would not happen...yet it does. The picture is obviously more complicated than that.

There is no rhyme or reason for pregnancy loss so much of the time.  To simplistically blame a woman's weight for her miscarriage is a care provider looking for simple answers that absolve them of having to look deeper, or from having to tell a woman that they simply don't know why this bad thing happened to her.

It's human nature to want answers because it gives us a sense of control over things. Sometimes providers jump to conclusions because they are human beings and they want to have a feeling of control over the uncontrollable.  When faced with tragic outcomes, the idea that if this woman just did "X" or "Y" then they could prevent bad things from happening to her ─ that's a very seductive idea.

But the hard truth is that we just don't know why most women miscarry.  And we really don't know how to prevent most miscarriages.  There is some research to suggest that weight could be a factor, but there's also research to suggest that it might not be a factor.  And there's no way to to know whether it's a factor in any one woman's situation.

So, please, providers, stop blaming fat women for their miscarriages, and try to be more sensitive when supporting a woman through a difficult experience like this.

All women ─ fat or thin, tall or short, old or young ─ deserve compassionate, gentle and loving support during a miscarriage. The last thing they need to hear is shaming and blaming at such a vulnerable time.

I'll say it again: When a woman loses a baby, give her sympathy and a listening ear.  That's ALL.  


References

Studies Finding That Obesity is Associated with Miscarriage

Fertil Steril. 2008 Sep;90(3):714-26. Epub 2008 Feb 6. Does high body mass index increase the risk of miscarriage after spontaneous and assisted conception? A meta-analysis of the evidence. Metwally M, et al.   PMID: 18068166 

Sixteen studies were included in the meta-analysis. Patients with a body mass index of > or =25 kg/m(2) had significantly higher odds of miscarriage, regardless of the method of conception (odds ratio, 1.67; 95% confidence interval, 1.25-2.25). Subgroup analysis from a limited number of studies suggested that this group of women may also have significantly higher odds of miscarriage after oocyte donation (odds ratio, 1.52; 95% confidence interval, 1.10-2.09) and ovulation induction (odds ratio, 5.11; 95% confidence interval, 1.76-14.83). There was no evidence for increased odds of miscarriage after IVF-intracytoplasmic sperm injection. CONCLUSION(S): There is evidence that obesity may increase the general risk of miscarriage. However, there is insufficient evidence to describe the effect of obesity on miscarriage in specific groups such as those conceiving after assisted conception.

Hum Reprod. 2004 Jul;19(7):1644-6. Epub 2004 May 13. Obesity is associated with increased risk of first trimester and recurrent miscarriage: matched case-control study. Lashen H, Fear K, Sturdee DW.  PMID: 15142995 

This was a nested case-control study. The study population was identified from a maternity database. Obese [body mass index (BMI) >30 kg/m2] women were compared with an age-matched control group with normal BMI (19-24.9 kg/m2). Only primiparous women were included in the study to avoid including the subject more than once, and to be able to correctly identify recurrent miscarriages. The prevalence of a previous history of early (6-12 weeks gestation), late (12-24 weeks gestation) and recurrent early miscarriages (REM) (more than three successive miscarriages <12 weeks) was compared between the two groups. RESULTS: A total of 1644 obese and 3288 age-matched normal weight controls with a mean age of 26.6 years [95% confidence interval (CI) 26.5-26.7] were included in the study. The risks of early miscarriage and REM were significantly higher among the obese patients (odds ratios 1.2 and 3.5, 95% CI 1.01-1.46 and 1.03-12.01, respectively; P = 0.04, for both]. CONCLUSIONS: Obesity is associated with increased risk of first trimester and recurrent miscarriage.

Studies Finding That Obesity is NOT Associated with Miscarriage

Eur J Obstet Gynecol Reprod Biol. 2010 Aug;151(2):168-70. Body Mass Index and spontaneous miscarriage. Turner MJ, et al.  PMID: 20488611

In a prospective observational study conducted in a university teaching hospital, women were enrolled at their convenience in the first trimester after a sonogram confirmed an ongoing singleton pregnancy with fetal heart activity present. Maternal height and weight were measured digitally and BMI calculated. Maternal body composition was measured by advanced bioelectrical impedance analysis. RESULTS: In 1200 women, the overall miscarriage rate was 2.8% (n=33). The mean gestational age at enrolment was 9.9 weeks. In the obese category (n=217), the miscarriage rate was 2.3% compared with 3.3% in the overweight category (n=329), and 2.3% in the normal BMI group (n=621). There was no difference in the mean body composition parameters, particularly fat mass parameters, between those women who miscarried and those who did not. CONCLUSIONS: In women with sonographic evidence of fetal heart activity in the first trimester, the rate of spontaneous miscarriage is low and is not increased in women with BMI>29.9 kg/m(2) compared to women in the normal BMI category.

Am J Epidemiol. 1988 Aug;128(2):420-30. Risk factors for spontaneous abortion and its recurrence. Risch HA, et al.    PMID: 3273482

Pregnancy histories of women interviewed as normal population controls during 1974-1981 in four case-control studies in the US and Canada were examined to identify risk factors for the occurrence of miscarriage. In total, 2,068 ever-gravid women aged 20-79 years at interview (mean age, 50.3 years) described 6,282 pregnancies, including 805 miscarriages. The roles of previous pregnancy history, age at pregnancy, and other factors were evaluated using relative risk binomial regression methods (similar to logistic regression)...Risk of miscarriage did not appear to be associated with years since previous pregnancy, height, weight or obesity, use of oral contraceptives within one year before pregnancy, or duration of oral contraceptive use. 

PCOS and Miscarriage

Best Pract Res Clin Obstet Gynaecol. 2004 Oct;18(5):755-71. The pathogenesis of infertility and early pregnancy loss in polycystic ovary syndrome. van der Spuy ZM, Dyer SJ. PMID: 15380145

Women with polycystic ovary syndrome (PCOS) frequently present with reproductive dysfunction. Ovarian function might be disturbed, with resultant abnormal folliculogenesis and steroidogenesis and, although it is difficult to define the exact pathogenesis of anovulation, many possible mechanisms have been postulated. Folliculogenesis in anovulatory women with PCOS is characterized by failure of dominance and the ovary has multiple small follicles, which are arrested but capable of steroidogenesis. Abnormalities in gonadotrophin and insulin secretion and disordered paracrine function have been identified. Women with PCOS have an increased prevalence of miscarriage, both after spontaneous and induced ovulation. Hypersecretion of LH, hyperandrogenaemia and hyperinsulinaemia have all been investigated as possible causes of PCOS. It is likely that these factors are interlinked and together might result in disordered ovarian and endometrial function. Multiple other possible abnormalities have been postulated as contributory factors in the reproductive failure. These include decreased plasminogen activator inhibitor activity, endothelial dysfunction and obesity. Ideally, therapy should target the underlying disorders but at present data are inadequate and further investigations are essential before therapeutic recommendations are truly based on an understanding of the pathophysiology.

Miscarriage After First Trimester Bleeding

J Clin Ultrasound. 1991 May;19(4):221-3. Fetal loss rate after ultrasonically documented cardiac activity between 6 and 14 weeks, menstrual age. Hill LM, et al.    PMID: 1646226

The pregnancy outcome of 347 patients with a confirmed, viable intrauterine pregnancy between 6.0 and 14.0 weeks, menstrual age, was determined. The miscarriage rate was 4.2% in a subgroup of patients without vaginal bleeding, as compared with 12.7% in a subgroup with bleeding (chi 2 = 7.4, p less than 0.006). First trimester vaginal bleeding was a significant covariate in the determination of the spontaneous miscarriage rate after fetal cardiac activity has been confirmed.

J Obstet Gynaecol. 2006 Nov;26(8):782-4. Probability of early pregnancy loss in women with vaginal bleeding and a singleton live fetus at ultrasound scan. Poulose T, et al.   PMID: 17130030 

Bleeding is a common feature of early pregnancy affecting about one-fifth of pregnant women in the first trimester...A prospective study was performed on 370 women with a singleton live fetus who had presented to the early pregnancy assessment clinic (EPAC) with vaginal bleeding. Women were grouped into light, moderate and heavy loss according to the self-assessed degree of vaginal bleeding. The women were also categorised according to the presence or absence of an intrauterine haematoma. The overall spontaneous miscarriage rate in the study was 11.1%; almost 90% of pregnancies continued to viability. Women with moderate or heavy bleeding had more than twice the rate of miscarriage compared with those with light bleeding. A total of 14% of the women had an intrauterine haematoma and those women were 2.6 times more likely to miscarry than those without (23% vs 9%). This relationship appeared to hold true even after controlling for blood loss. The data presented can be used to guide women with a live fetus about the chance of miscarriage after an episode of vaginal bleeding....

Do You Know You're Overweight?

Another gem from My OB Said What?!?

I keep trying to swear off repeating these here on my blog, but they just make too many of my points for me to resist, plus it's just important to fully document incidents like this.  So here's another one:

“Oh my goodness! Do you know you’re overweight? Have you tried to diet and exercise??"
– OB immediately upon entering the room and meeting a mother for the first time. The mother was in the process of miscarrying a 16 week pregnancy

I'm not even going to start commenting on this one, it's so wrong on so many levels. Urgh.

Commenters, go for it.  What do you want to say to this doctor?

Birth Story Video: Jennifer's Waterbirth

Here is the birth story and wedding/birth video of a plus-sized mama I thought readers might enjoy.  It's not a short video (about 6 minutes) but it's well worth watching!

Below is the mother's story (which includes 4 previous miscarriages) and what she wants other women of size to know about pregnancy and birth.

My name is Jennifer. I live in southern Oregon and am a midwife apprentice. I have attended many births and have caught 4 babies under supervision. Of the many births I have attended, a good handful have been to plus-size mommas. 

Two off the top of my head were between 300-400 lbs. Both mommas had very healthy uneventful pregnancies and wonderful easy labors, and both mommas delivered in water at home. Water is great for plus-size mommas because it allows you to move more easily into different positions.  

I myself am a plus size momma. I am 5'6" and started my pregnancy at 232 lbs., about size 18. I finished my pregnancy at 276. I know doctors like to tell you to only gain 15 lbs. if you're "obese" but that's one of many reasons I didn't choose a doctor! I am a firm believer that as long as you gain your weight on healthy food then you gain what you need, and restricting food can cause issues in pregnancy. Nutrition is key in pregnancy, especially protein!   

I had a wonderful very healthy pregnancy with a midwife, and gave birth to a beautiful baby at home on Christmas eve.  A baby girl,  9 lbs. 12 ounces, 20.5 inches. 

Being plus size and pregnant is a challenge but I think it's because we set up obstacles in our minds. Will I look pregnant, how much weight will I gain, will I be able to handle the physical demands of labor, will I be bullied into tests and procedures because I'm overweight? 

Remember that you are a strong, intelligent, beautiful woman who can birth a healthy baby, regardless of your weight. If you aren't comfortable being your own advocate, then hire a doula! Get educated, know your options, and don't forget to celebrate this beautiful rite of passage!

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.

National Pregnancy and Infant Loss Remembrance Day

There is no foot so small
It cannot leave an imprint
On this world

Today we remember all babies born sleeping, or whom we have carried but never met, or those we have held but could not take home, or the ones that came home but didn't stay.

Today, October 15, is national infant and pregnancy loss remembrance day.

If you or someone you know has lost a baby during pregnancy or infancy, light a candle in remembrance of this tiny life. This wave of light begins 7 p.m. in all times zones around the world.

http://www.october15th.com/

*In memory of William George, born still April 1, 2009; beloved son of a dear online friend.

And in memory of all the other babies I have known who were born still.  I remember you and hold your families in my heart.