A Plea: PCOS Awareness

I've mentioned before on this blog that I can't have very many carbs, without explicitly stating why. Now I will, because something has been bugging me about it.

I have Polycystic Ovarian Syndrome (PCOS), which despite its name is a multi-system endocrine disorder, with the main problems exhibited in the metabolic and reproductive systems. At conservative estimates, it affects about 10% women of reproductive age, and doctors believe that this number is actually an underestimate because so many women go undiagnosed. Australian researchers put successful diagnosis rates at about 30%. It is the most common cause of infertility, obesity and insulin resistance among women. It leads to increased risk of cardiovascular disease, diabetes, and certain cancers even among sufferers of normal BMI.  It's cause is unknown, and its even unsure which organ is the primary mover (present best guess is adrenal glands), or if it is a fundamental miscommunication between several endocrine centers.

Besides the physical problems that attend this syndrome, women who have PCOS are several times more likely to suffer from depression, eating disorders, and lower quality of life as measured by the PCOSQL survey. It is at this point unknown whether the hormone imbalances which are characteristic of PCOS lead to this, or the fact that the women have received an incurable diagnosis with very few treatment options and almost no social support is to blame.

While I can personally attest to the fact that a PCOS flair can lead to weird mood swings, I'm going to suggest that the higher incidence of depression etc can be blamed almost entirely on external forces.

I am what you could call a best case scenario. I was diagnosed just over a month after symptom onset, thanks to my mother instilling in me early on the need to keep track of things and an incredibly astute doctor. I gained 8 pounds before I knew that I had won the lottery and gotten insulin resistance along with my polycystic, lazy ovaries. Starting with a low glycemic index diet and moving at this point to a very low carb diet let me quickly shed that weight and then some. I'm lighter now than I have been my entire adult life, and I was never overweight to begin with.

But here's the thing. There is no approved treatment for PCOS. Oral contraceptive pills (OCP) reduce the risk of endometrial cancer by not allowing it to build up for months on end, but it comes with its own risks, including increasing insulin resistance in some women. Some doctors will prescribe metformin, a diabetes II drug, to improve insulin response, but its efficacy is in serious question, particularly since more recent studies, what few there are, show that the insulin resistance which accompanies PCOS is fundamentally different than that caused by obesity or other disorders. In fact, researchers are suggesting a name change from PCOS to "Female Metabolic Syndrome" or "Reproductive Metabolic Syndrome" to emphasize the fact that it is a different thing*. If you are overweight, they recommend you lose weight, as in severely obese women this can reverse some of the symptoms.

That's it. Sure, there are some fertility treatments, but those are only if you are actively trying to conceive. If you are just trying to live with it, that is the sum total of what medical science can offer you. Lose weight if you are overweight and exercise, which everyone is told anyway. OCP can reduce cancer risk. Metformin if you are trying to conceive, very overweight or already in diabetes II territory. Reduce carbs and eat lean protein. And...that's it. Go live with this for the rest of your life. This has been the same picture for, as far as I can tell, the past 30+ years.

Millions of dollars are spent every year to make us 'aware' of things like breast cancer (with little to no effect on the death rate, but plenty of effect on the overdiagnosis rate). The NFL, the most manly man sport American's have because we somehow forgot rugby existed and all our hockey players are Canadian, dyes itself bright pink for October and Breast Cancer Awareness month. PCOS has basically nothing. The PCOS association is one of the saddest websites I've seen lately. And its main supporter is a hucksterish faux medical 'lab' that sells 'natural' supplements to desperate people. Research grants go to things like finding out what happens if you give spiders pot, but very little research is done on PCOS. Admittedly, it's complicated, but so is every other medical problem. Not to pick on breast cancer, but PCOS affects more women and the fact that September is National PCOS Awareness month didn't even make it onto Wikipedia. National Fish Month and National Yoga month made it on there though.

So is it any surprise that women with PCOS turn in droves to alternative 'medicine'? That they will eschew what little science there is because it offers them next to nothing and is inadequately explained/offered even when it does (there was an article on the need for more accurate information going out to women with PCOS. File under 'no duh'). We are desperate for relief, for hope, for comfort. PCOS has a way of destroying everything that makes you feel feminine, including giving you a mustache and male pattern baldness, on top of the medical problems. So we will down gallons of herbal teas, pounds of saw palmetto, garlic, ginger, and cinnamon, try acupuncture,  fad diets and fake cures, all in the pursuit of feeling normal again. Even if you are trained in the scientific method and take a strong stance against quacks, it is hard to resist when they promise that you can have bread again, or even just live without watching everything you eat. To not have to spend a small fortune on Gillette/Nair/salons in order to not look like a gorilla. To feel normal again. It can feel like doing anything is better than waiting for your symptoms to just keep getting worse.

So please, anyone who might read this. If you are in a position to give funding, help make this a funding priority. If you are the kind of person who is good at making huge charities, we seriously need help with this one. If you are a bioscience type who leans towards interdisciplinary research, let me encourage you to make PCOS your focus. If you are none of these things, but you know more than 10 women, the odds are good you know a woman with PCOS. She probably feels very alone. If she reaches out to you, let her know she's not alone, and help her resist the quackery and push for more serious research. We will all thank you.

*I would support a name change to either FMS or RMS (leaning towards the latter). For one thing, either sounds more like something you can mention in mixed company, emphasises the fact that its way more than just the ovaries that are affected, and eliminates the polycystic part of the name, which is no longer a necessary part of the diagnosis criteria. Also, it would move us away from saying "Pee-cos", which a) reminds me of Pecos Bill from Tom and Jerry b) just gets on my nerves.