PCOS: A Disorder By Any Other Name Would Still Be as Sucky
NIH is recommending that the disorder PCOS, which can be a cause of infertility, be renamed to make the parameters of the disease clearer. I want to stress that “can be” because just as NIH is stating that the name can become an impediment to understanding and diagnosing the disease, PCOS itself is so misunderstood that many believe once they have a diagnosis in hand and start Googling that PCOS is an automatic, do-not-pass-go route to infertility. It’s not, though it is a very common cause of infertility.
The best explanation I’ve ever read about the disorder and the history of defining the disorder came from Shady Grove. In that article, Greenhouse also discusses all the former names of the disease, because this wouldn’t be the first time it has switched names. It has been called Stein-Leventhal Syndrome, Syndrome O, Syndrome X, and functional ovarian hyperandrogenism (because the base of the diagnosis is elevated androgen levels).
The largest chunk of me is for the renaming, mostly because I think having “ovarian” in the name creates a mental limit as to the long-term effects of PCOS. This isn’t a disorder that falls into the background when you’re finished using those ovaries to build your family. It’s the disease that keeps giving, creating a plethora of lifetime issues, such as problems utilizing insulin which can lead to a greater incidence of diabetes, another disease with long-range effects. You’re at a greater risk for the largest killer of women: cardiovascular disease. So yes, I think taking the emphasis off the ovaries in order to convey that women with PCOS need to be concerned about a lot more than family building is important. Which is not to diminish its effect on family building. I am only pointing out that this disorder has its fingers in so many other areas of the body than the reproductive organs.
And yet, we just finished talking about how names are important, names define us, names are more than just a mass of sounds that convey what we’re talking about. It’s disconcerting to have a name change. This disorder has weathered name changes before, but all of those changes took place long before the disease found its way into the collective consciousness of the infertility community. In entering our brains, in becoming a commonplace term that we know and understand even if it’s outside our own diagnosis. There is also a sense of ownership that comes from usage. There are still places I call by their old name, even when someone formally changes the building’s moniker.
What do you think of changing the name of PCOS?
23 comments
This reminds me so much of the nomenclature surrounding premature ovarian failure vs. primary ovarian insufficiency (both the same thing, the latter being the newer, hipper term) and how diminished ovarian reserve can potentially lead to POF/POI. But you’re right – “ovarian” is somewhat limiting in the longterm scope of the disease’s effects. Like PCOS, POF carries increased risk of cardiovascular disease, along with osteoporosis/osteopenia and stroke. POF/POI that’s left undiagnosed or properly treated actually carries a greater risk of shortened lifespans – it’s serious stuff. And yet, labels like POF and PCOS do limit the scope largely to fertility, since that’s most often the case when these diagnoses come to light.
That said, there is a bevy of literature and research about the additional lifelong implications of PCOS, particularly with regard to weight, insulin resistance (and the greater risk for type II diabetes) and cardiovascular disease. It’ll be interesting to see if a name change brings these issues more to the forefront rather than just their implications for fertility.
As someone who went 15 years without a PCOS DX, I am all too glad for it to be renamed. I do not have cysts but I have several over symptoms and many doctors were reluctant to diagnose. I agree that by taking the focus off ovarian it could shed light on some of the more important issues of PCOS, such as insulin resistance and metabolic syndrome. Most importantly to me, I think that the increased knowledge on the part of medical professionals will go a long way to proper DX and treatment (other than being told to simply loose weight – something that is nearly impossible with PCOS).
I think it’s a good thing – PCOS seems almost misleading, in terms of the variety of symptoms and potential other diseases it could cause. But, I suppose I would reserve judgement until I saw what the new name might be…
In addition to a name change, I’d also like to see more research on whether it’s really a single syndrome that all these women have or if there’s several different things wrong that present with similar/overlapping symptoms.
Thanks for posting this. My PCOS lead more to the rapid weight gain and discol0ration of certain parts of my body and it was tyed with Type 2 Diabetes, the only way to control the weight problem after taking lots of medication that made me sick and lots of exercise with no results was bariatric surgery. Yes the name needs to be changed
Hi from ICLW! Thanks for keeping up such a terrific blog! I agree the name change could be beneficial. There are so many more things at risk other than cystic ovaries.
I think it doesn’t matter what they call it if doctors don’t educate patients on what the condition is, how it will affect the body and how best to treat the condition or the importance of treating the whole condition. So many doctors anymore are so over scheduled, you get your 10-15 minutes and they just give you a prescription and tell you to take this pill without explaining much of anything.
Thank you for drawing attention to this, in addition to PCOS in general. It is a condition that is widely misunderstood by the public, medical professional, within the ALI community and even by patients themselves. The collection of symptoms that patients may present with infers a personalized medicine approach to managing it, however, as many “cysters” will tell you, it is NOT a one-size fits all diagnosis.
According to the Rotterdam criteria set out in 2003, women must demonstrate 2 of the 2 following criteria to meet the threshold for a diagnosis 1) anovulation (chronic or sporadic), 2) clincial and/or biochemical signs of excess androgens, 3) polycystic ovaries on ultrasound. Meaning that one need not have PCO in order to meet the diagnostic criteria for PCOS, making the existing name of the syndrome misleading and more likely to be dismissed by many doctors. Moreover, a woman may ovulate *normally* OR infrequently (or not at all) and still meet the criteria. It would appear from criteria set forth by various bodies that an excess of androgens is the “hallmark” of the disease.
As someone with a definitive diagnosis of PCOS, I can tell you that I may not look like it. In fact, I have had this diagnosis openly questioned by other IFers (to my face, and through intimation online) because I “don’t look like” I have PCOS. Well no, I don’t wear my ovaries or my BBT charts on my sleeve. And my pregnancies were relatively “easily achieved.” Additionally, friends, family, (and again, some IFers) seem to think that because I was successful with treatments for my first child, my PCOS is a) magically cured or b) “not that bad” in the first place, hence my surprise second pregnancy. (To say nothing of the assumption that infertility = sterility, but I digress). I have tried, and tried, and tried, to point out the long-term health effects of an endocrine disorder (thought to be the most common affecting women no less) and it has largely fallen on deaf ears. Even to people who should know better.
So yes, I do believe a name change needs to happen, in conjunction with a public education campaign about an endocrine disorder thought to affect a startling percentage of women of all ages, backgrounds, shapes and sizes. As you pointed out above, it is implicated in the number one killer of women in North America. It’s time.
Here is an interesting article from the Society of Obstetricians and Gynaecologists of Canada discussing issues with the diagnostic criteria for PCOS. The difficulty in even defining spectrum of symptoms within the syndrome will weigh heavily into what to ultimately re-name it. It is a head-scratcher to be sure.
http://www.sogc.org/jogc/abstracts/full/200808_Gynaecology_2.pdf
I have PCOS, and I’m all for the renaming. I wish that it fit all that it is (or at least was a better fit) than just it’s adjective naming of what’s going on in my ovaries.
I’m with SRB on this one. Unfortunately, when people hear “ovarian” in PCOS/POF, they assume that the disease is limited to fertility. Yet we know (as Keiko pointed out) that PCOS and POF are actually endocrine disorders that lead to a lifetime of other conditions, such as diabetes and cardiovascular disorders. We need medical professionals and our society to stop viewing PCOS and POF as diseases that are limited to one’s ability to produce eggs.
I’ll point out one other thing: name changes are actually fairly common in science and medicine. Granted, it takes a little bit of time to adjust, but new names actually help medical professionals and scientists think more broadly about the condition they are treating/investigating.
I have PCOS. The name itself can be misleading, plus it shuts people down when you try to talk about your disorder because “Eww, icky, ovaries,” when in reality it does sneak into many other aspects of your life. I don’t tell people I’m on Metformin for my PCOS, I tell them it’s for my insulin resistance or endocrine disorder, because they really do get that deer in head lights face. It makes it hard for people to realize how far reaching the disease is- most people in my family only know it as the primary cause of my infertility, and they think that now I have a child that I’m done with the disease. Which is such a crock of BS.
At the same time, I have PCOS. It is very much a part of my identity. People can easily recognize it, they know so and so that has it, because it’s so prevalent and “mainstream.”
I think changing the name might lead to a little confusion, it might make it harder to find information *initially* even, but I think in the long run it has a lot of potential benefits
I have to say that I’m for the name change, mostly because I thought you had to have poly-cystic ovaries to have PCOS and, through the comments, I’ve just learned something new. 🙂
First of all, amazing website with so much valuable info!
Regarding the article I think that the current name is way too simplistic when you compare it with the whole spectrum of the “syndrome”. I am diagnosed with it and have suffered from the infertility aspect which has been devastating, but PCOS is so much more complex.
The quality of life in women with PCOS is affected in so many ways. For example high cholesterol and high blood pressure which puts us at risk of cardiovascular disease, higher risk for uterine cancer, amongst other health issues.
I agree with Battynurse in that education both for the medical professionals and the patients is the most important thing of all. There should be more research and more options for us. I’ve been to doctors to whom I’ve told about my PCOS and they have no idea of what I’m talking about. So frustrating!
I would definitely be for a name change. So often it seems when I say I have PCOS people only think about my infertility. Yes, that is a big part of my life. It’s impossible to get pregnant without eggs. But this condition is soooo much more than that. It affects many, many aspects of my life in huge ways that are just not represented by the name PCOS. I want people (and doctors especially!) to recognize how encompassing this condition is.
I’m with you on this one. I think the ‘ovarian’ title takes the emphasis off the ‘syndrome’ part. And does anyone call bipolar disorder manic-depression anymore? Not usually (and if so, they are dating themselves), so while I think a name change will take a good long while to stick, it will stick, eventually.
And on the syndrome side of things, I have always wondered whether I have PCOS. I have hirsutism (not something I comfortably admit), ongoing adult acne, weight issues (probably my own fault, but…), some lingering whore-bag cysts, etc., but because I am regularly ovulatory, PCOS is not on the radar. I am not pompous enough to think I know more than the multiple REs that have excluded that diagnosis, but sometimes I do wonder if the ‘syndrome’ part escapes them. Perhaps a name change would help that.
(I probably have an endocrine disorder of some sort that’s just not yet been uncovered. Frustrating)
After reading your post and all the comments, I’m definitely for a name change and education to all. I learned a lot from reading this. Thank you for giving me a slight better understanding of what PCOS is/does.
Mel, there are some places DH and I still call by their old names. If we had to explain it to someone else, they’d have no idea we are talking about the shop down the street. 🙂
Shelby, oops, I have still called it manic-depressive at times..but it totally fits my ex (who was diagnosed with it). I’ll try and remember bipolar from now on. Thanks!
I’m one of those women who was diagnosed with PCOS but didn’t have the cystic ovaries to go along with it. The current name is definitely misleading and fails to adequately convey what the disorder is really about. I really hope the name gets changed – and soon!
This is an interesting question to me, partially because I’ve been reading a good bit on how diagnosis of medical conditions can be a political act and affects how insurers cover care (the particular case I’ve been reading about deals with how/whether military psychiatrists were pushed to diagnose veterans with “personality disorders” – the treatment of which was not covered – versus PTSD – which was covered).
My insurer doesn’t cover anything related to infertility. And there’s a sense in which I wonder how much the enormous emphasis on the infertility aspect of my PCOS is going to make it hard for me to treat the other aspects of the disease. What happens if my doctor decides to start me on a metformin regimen or I develop diabetes in response to the condition? Metformin is used to regulate the insulin resistance in the disease, which incidentally also might help with ovulation (although the medical community is somewhat divided over metformin’s effectiveness in helping with ovulation). So what is being treated? PCOS? Infertility? Do I pay because it might help me get pregnant? Or does my insurer pay because it’s treating the disease process?
I’m for the renaming, because as several other commenters have stated more eloquently, the “ovarian” in the title is both misleading and it also leads to an overlooking of the many other aspects of the condition. Naming the condition something that forces the medical community and insurers to acknowledge and treat all the aspects of the disease would be a good step. I’ve wondered if the other, very real, problematic aspects of PCOS were more widely acknowledged if it would become more difficult for insurers to refuse treatments or dismiss it as “just” infertility.
It took me a number of years to get a PCOS diagnosis — but even when I received in my RE said something that has always confused me — that I had PCO — but not necessarily PCOS — (That’s what I heard anyway) — but I think what she most likely said was that my polycystic ovaries and lifelong irregular periods were enough to diagnosis me — I have had a lifelong battle with maintaining a normal weight — and it is incredibly difficult to lose it — something I always attributed to my lifelong dieting. I look back on it now and I realize that I had terrible acne on my back in high school — I “outgrew” it — but all of these things are markers of the endocrine disorder and it took until I was in my mid-thirties for someone to discover it. Now I am 40 and I am thinking about long-term repercussions for my health — that yes, for me, it did cause infertility — and though my insulin levels had been normal when checked… I can’t help now but think I need to address and be very serious about the other implications. I’m all for the name change — even I have to remind MYSELF that this isn’t just about reproductive health but overall health.
XO
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I had so many androgens surging through my body due to PCOS that I was diagnosed at 13 (a 13 year old girl growing a full beard and singing tenor in choir tends to get noticed….).
However, there has been almost no focus on the fertility side of PCOS with my doctors because I have never wanted children. All the focus has been on the myriad of other issues.
I’m fine with a name change but I’m also fine with PCOS.
Thanks for posting this, Mel! Another great blog post.
Infertility has a lot of acronyms. PCOS is not the best name but it gets a little confusing if medical names are changed along the way. At this point (most) people are familiar with the name so keep it.
I am all for a name change. The issue I see with PCOS is that when you tell someone the name they immediately link it to fertility – and than it’s “oh it’s just your menstrual cycle – it’s normal.” Yet there is nothing normal about PCOS and the issues that most women with the disorder face. I hate it that people think I’m just a wimp and can’t handle “cramps” because I say I am in exterme pain because of my PCOS. Or I eat to much that’s why I’m fat. People need to understand that PCOS is real and not just something that effects fertility. Maybe changing the name will make people see it as being more serious than they do now.