Friday, November 29, 2013

Sixth Annual Turkey Awards: PCOS Isn't a Real Disease

It's that time again ─ time for The Well-Rounded Mama's Annual Turkey Awards. Our sixth annual Turkey Award, to be exact!

These are the awards I hand out for fat-phobic treatment of people of size from care providers, biased attitudes or studies from researchers, or highlighting troubling trends in the care of fat pregnant women these days.

In past years, we've talked about fat-phobic care providers, scare-mongering and shaming tactics, jumping to conclusions about risksscorched earth tactics, and prenatal weight gain extremism,

This year I have spent quite a few posts focusing on treatments for PolyCystic Ovarian Syndrome (PCOS), and so this year I thought it fitting that the Turkey Awards also focus on PCOS.

PCOS: Real, or Just Another Excuse for Being Fat?

Despite all the research on PCOS, it's shocking that there are still care providers and others who don't believe that PCOS is a "real" diagnosis ─ that's it's just another ploy by obese people to make excuses for being fat. For example:
  • There's this entry over at "First Do No Harm," where the doctor tells a woman recently diagnosed with PCOS (by another doctor) that “PCOS isn’t a real disease, it’s been made up by fat women”
  • Or the spokesperson for a major medical organization who said, "The prevalence of PCOS appears to be rising because of the current epidemic of obesity"
Look, care providers. I get that you look at most women with PCOS and see lots of obesity. Yup, there's a strong correlation between obesity and PCOS. But not all fat women have PCOS. And some thin women have PCOS. It is doubtful that there is a one-to-one causal association here.

PCOS goes far beyond questions of fatness. It is an underlying metabolic and hormonal disorder that wreaks havoc in the body. It is indeed a REAL condition and it's NOT just a side effect of being fat.

If anything, PCOS probably predisposes to weight gain. That's likely why so many women with PCOS are fat.

But it doesn't mean that being fat causes PCOS.

Nor does it mean that if you just lose a bunch of weight, all symptoms of PCOS will disappear forever. Some people find that it helps, but many people don't.

And it certainly doesn't mean that fat people have invented a bogus disease to make excuses for their fatness or to cover up bad habits that they are just too lazy or stupid to resolve.

PCOS Denial

Why do some care providers refuse to believe that PCOS is real? I keep scratching my head over that one and this is what I come up with.

Some have simply been trained by medical schools to blame every health problem fat people have purely on being fat. Many won't believe anything that fat people say about their habits because they were taught that we are all in denial or lying about our habits.

Some like making assumptions about what fat people "must" eat so they can feel morally smug and superior. After all, their bodies work just fine and stay skinny with moderate habits. If ours are larger, it must be because of excessive habits, not some underlying metabolic difference. All bodies always work exactly alike, right?

Many want an easy answer for the tough symptoms of PCOS, a quick fix without acknowledging the complexity of the condition and its resistance to conventional treatment. Blaming fatness and promoting weight loss as the cure gives a conveniently easy answer without having to look deeper at the fact that many people don't experience a magical cure with weight loss and that most weight loss rebounds with enough time.

Some truly mean well but feel powerless when dealing with PCOS. People don't like to feel powerless, so when they can't provide a quick fix, they often dismiss or minimize symptoms, attribute it to something else, or blame something about us for developing symptoms at all.

Because, you see, if you can blame the victim for their disease, then you don't have to feel bad when you can't instantly cure someone. And then you don't have to admit that body differences go far deeper than we want to acknowledge. Or believe inconvenient truths, like not all bodies are created with a level playing field.

If providers can believe it's our fault, then it conveniently frees them from even needing to TRY to figure it out or cure it. Just blame the victim and their "lack of willingness to change" and move on. Problem solved. No need to agonize over it or feel bad or to admit that you are powerless to fix some things.

Fortunately, awareness has been raised in recent years and most providers these days don't treat PCOS like a figment of the imagination. They know it's a real condition and they truly care about helping us maximize our health and find some answers. There are still some turkeys out there who don't get it, but thankfully, most do.

But even among those who recognize PCOS as a real condition, there are still plenty who think that weight loss is a sure cure for it and that anyone still suffering from symptoms just hasn't tried hard enough (or used the "right" program) to lose the weight.

Despite all the progress we've made on PCOS, it still all comes down to a focus on weight for far too many providers. 

What Women With PCOS Want From a Provider

Women with PCOS want a provider who understands that there IS a real condition called PCOS, and that it's not just tied to "bad" habits or being fat.

We want a provider who gets that there is something different about our underlying metabolism and/or hormones, and that THIS is the primary source of our symptoms, not fatness.

We want a provider who doesn't think we are looking for an excuse for being fat, who will take our symptoms seriously, and who will work with us to find the best treatment plan for our individual circumstances and desires.

We want a provider who understands that while healthy nutritional habits and regular exercise can go a long way towards helping lessen PCOS symptoms, they don't cure anything ─ and often provide only a temporary reprieve. They sure as heck don't make most of us permanently skinny. We want providers who understand that it's far more complex than that.

We want providers who won't just make assumptions about our habits based only on our weight. We want providers who will encourage us to work on healthy habits, but without necessarily focusing on the scale as the main measure of healthy habits. We want providers who understand that healthy habits can still exist in the context of a high BMI and independent of actual weight loss.

Some women with PCOS will be interested in weight loss and some will not. We want providers who are respectful of either choice but who understand that all our issues won't be solved just by losing weight or trying diet "x." If we decide not to pursue weight loss, we want providers who will respect our right to patient autonomy and who will be willing to focus on other modalities of treatment.

Final Thoughts

Providers, believe that PCOS is a REAL condition ─ one that is not created by carelessness, willfulness, ignorance, or bad habits ─ even though we don't fully understand exactly what it is yet or how to fix it.

Stop making weight the center of your focus around PCOS. It is just one facet of this condition. You can discuss weight loss as one of the choices on the spectrum of care, but realize how difficult it is and how the metabolic differences of PCOS works against its success. Don't make weight loss the only tool in your PCOS toolbox, don't harass us about it, and respect our choice if we decide against focusing on it.

Stop blaming the victim, and realize that PCOS is a complex condition that goes beyond simple fixes. Help us experiment to find the treatment modality that fits our circumstances and desires, rather than working from some inflexible formula of what all PCOS patients "should" do.

Work WITH us instead of lecturing AT us. Treat us with dignity and respect, listen to us, and individualize our care according to our wants and needs. Then ─ and only then ─ will we make true progress towards optimal health with PCOS.

*Have you encountered weight bias when trying to get diagnosed with PCOS? Did your providers blame all your symptoms on fatness instead of exploring the possibility of PCOS or other issues? Do your providers remain fixated on weight loss as a "cure" for PCOS to the exclusion of other possible treatments?  What would you like to tell providers about serving women who might have PCOS? Share your stories in the comments section.


Mich said...

I read the link you provided from Sleepy Dumpling.

I will say that when I was 11 I had surgery with what they thought was appendicitis, but turned out to be a cyst the size of a grapefruit that had twisted over twice. The ovary and fallopian tube were nearly dead. I had been in pain since I was a baby, constantly sick with stomach bugs or due to changes in my body (I've had many yrs to think about it now). After the surgery, I never got another stomach bug. (Which leads me to believe they were not stomach bugs or maybe it was due to compromised immune system).

I did experience the massive weight gain in late teens-early 20s, which was blamed on me "sneaking" food and being a lazy bum (I was anorexic for the most part and walked everywhere, I also had next to no muscle due to not eating). I had horrific pains during menstruation that continued to last outside of the bleeding (most of this pain was due to lactose intolerance which I had to self diagnose) so I thought I had another cyst (the surgery at age 11 removed the right ovary and tube, so I only have 1 of each now). I begged for an ultrasound and on the sheet I took to my new doctor said they couldn't see anything due to my "habitus" which I figure was a sciency-snark way of saying I was "so damn fat".

Well, after treating the LI most of the pain, diarrhea and weight gain went away (stabilized at the higher weight), but the bleeding continued. I started developing these huge boils on my breasts, armpits, and hips about 7 yrs ago too. When I was younger (early-mid teens) I got pimples all over the genitals, especially where the panties rub. One doc said these boils come from being so fat that my skin rubs and gave me some antibiotics (which did zero). I was away from home at that time, and I had spent 3 hrs at a medicentre in Edmonton on the last day of my drug coverage (my plan dropped drugs in favour of adding chiro and physio).

I had been taking a prescrip. drug to help with the PMS but it only worked a few times. After I saw my own doc about the boils (it was 4 yrs from first showing) he said they were carbuncles connected to blood sugar levels. I think he said this because my mom comes from a family where almost everyone has diabetes and he wanted to diagnose "fat and stuffs her face". He sent me to a nutritionist who also didn't address the symptoms, but they both encouraged anorexic behaviours.

After reading some stuff about wheat and celiac, I decided to switch to other grains and do all my own baking. For the first time in 5.5 yrs my breasts were boil-free, and the first time in 20 yrs the chronic "cold" I had was gone. I could breathe again!!!

Over the last month I've had more boils but this is because I truly got lazy and bought some regular bread and buns. I thought only having 1 bun/day would be safe, but apparently not.

I think my experience puts paid to the anecdotal evidence that PCOS women also get celiac or wheat allergies.

Thank you so much for your blog and the PCOS series about treatment options. I'll never take metformin myself, seeing what it's done to my parents and horror stories from others.

Well-Rounded Mama said...

Mich, thanks for your comment. I'm sorry you've been through so much and your care providers haven't taken your symptoms seriously!

I do think there is a celiac/gluten connection for many women with PCOS. When I do the post on Lifestyle Treatment Options, we'll be covering that. I'm beginning to wonder how much of PCOS is connected to autoimmune issues, which includes things like gluten intolerance, Hashimoto's, and other fun things.

I had the awful boils too; totally normal blood sugar so that's not it. I think it's a sign of strong insulin resistance more than blood sugar, and subclinical endocrine imbalances. Mine substantially disappeared when I got my Hashimoto's treated finally; my results were always "subclinical" but doing a trial of meds and treating to symptoms made a HUGE difference in so many of my symptoms. Didn't make the PCOS go away, and I can still get some of these symptoms sometimes, but getting the thyroid in an ideal range for ME was key in lessening my PCOS symptoms to more tolerable levels.

Well-Rounded Mama said...

Oh, forgot to address the metformin part of your comment!

Metformin is an amazing drug and helpful to so many, BUT there are those who simply cannot tolerate it. It's certainly not a miracle drug for them! If it's not for you, it's not for you.

The point is to explore all the other options as well. You might be able to tolerate the inositols better than metformin, for example. Lots of people find good results with d-chiro-inositol. Or some of the "alternative" stuff, like herbs (vitex/chasteberry etc.) or cinnamon or apple cider vinegar. Exercise is also key in lowering insulin levels as well. Going gluten-free seems to make a lot of difference for some with PCOS too.

Some people simply cannot tolerate metformin and they don't need to feel bad if it's just not an option for them. But it may be helpful to explore the alternatives to see if they help.

In the meantime, I'd also check those thyroid levels (get the actual levels, not just "normal" or "abnormal," and do some research on the best cutoffs to use for diagnosis. Thyroid may not be the issue for you that it has been for me, but whenever I hear people talk about the boils, I encourage them to take another look at their thyroid levels. Too many people have subclinical disturbances that go untreated, when many might actually benefit from a trial of meds.