44 Demystifying PCOS

It starts with mild weight gain—but then do we not all gain weight from time to time? Sometimes it comes as a new hair on your face—but then who does not have a stray hair or two? Still other times it comes as a delayed period—but even those with the most regular periods see a few days’ delay every once in a while. It is perhaps the mundanity of these symptoms that has ensured that nearly half of all cases of PCOS go undiagnosed until it is too late.

However, once diagnosed things are luckily in the hands of the individual and certain consistent steps are known to effectively keep PCOS at bay. But like in a lot of other things in life, a showering of encouragement, a sprinkle of fun, a dash of morale boosting, and a generous helping of discipline can make PCOS a bystander rather than a weight pulling someone down.

Back to the basics

What actually is going on

Polycystic Ovary Syndrome (PCOS) is the treatable cousin of the chronic Polycystic Ovary Disorder (PCOD) and affects around a tenth of all young women today—at least those lucky enough to be diagnosed early on. Part of the trouble with PCOS is that doctors themselves do not have the symptoms pegged down. Variations in diagnostic criteria, besides leaving several women undiagnosed, also incorrectly estimate the value of various symptoms; particularly, they often overestimate the relationship between weight and PCOS. Further, doctors are also uncertain about the causes of PCOS although the main contenders are weight gain and genes.

TBW.

The implications of a diagnosis

Being diagnosed with PCOS is hard much like any disorder. But what makes it worse is the entire thing can quickly feel like a bottomless pit of despair: weight gain can induce PCOS, weight loss can battle it, but weight loss is harder with PCOS and weight gain as always is catalysed. It feels almost like nature playing a cruel joke on you.

Society often makes things harder too. Stigmas of masculinity in women, from a heavyset body to noticeable facial hair, are prevalent enough to drive anyone’s enthusiasm down. Personally, too, the lurking probability of infertility and diabetes can be almost nightmarish.

What all this comes down to is realising that nothing inherently prevents you from dealing with PCOS—there are just threats whenever you try. The start then must come from a great support system. Let your spouse and/or immediate family in on the diagnosis and clarify what steps you need to take. Also make sure you tell them they can remind you and prompt you and check on you every once in a while. This not only makes them prepared to support you when you most need it but also makes sure they can help you stay accountable to yourself.

In short, PCOS is an enforced journey of fitness. You no longer choose to get fit, you have no choice but to get fit. Keep that in mind, and with your familial support system, you can focus on working on yourself without every brining PCOS or its effects into the equation.

What to expect

TBW. (Probably refer to the Ndefo/Eaton paper you linked to.)

A simple regimen to defeat PCOS

1. Spousal support

Arguably the single most important facet of working against PCOS is support from a spouse and/or immediate family. Particularly for the spouse all the support they can give boils down to a simple statement: you are not alone. This means exercising with your partner, joining them as they pick up a healthy diet, and generally adopting a healthy lifestyle along with them rather than lazing around or snacking constantly while they struggle to fight their temptations and—at times—their will to remain stationary in bed.

The key is support, not simultaneity: it does not, for example, mean literally exercising together although that is a great thing if it can be realised; it simply means exercising regularly and talking about it so your progress inspires your spouse and vice versa. Likewise for planning healthy meals and occasional indulgences. For husbands this can simply be a case for keeping fit in general; for wives this can be a case for preventing PCOS. Either way, this is simply good advice all by itself.

In our case we use our Apple Watch to keep track of our activity; we try to close rings daily, show off our achievements to each other, and encourage each other to keep at it.

2. Exercise with discipline

Exercising is a funny thing: it feels great once you start it, but starting it is the greatest problem for most of us. Three things help make this easier to some extent. First, think of exercise as a necessary part of your day, a discipline rather than a choice. Two, make it easy to start; for those of us who visit the gym this means keeping our clothes on hand (preferably the day before) or for those who work out at home it means keeping your equipment together so you do not have to set up your workout area every day. Three, make it fun by counting everything you do: if you cycle, count your time and distance and keep improving it; if you do callisthenics count your reps and improve their quality and quantity; if you swim, time your laps religiously.

It helps to bring things together while we are at it. Workouts with your partner are great but they may not always be possible, so share your progress constantly. Use technology to help you on your way, even joining online fitness groups if necessary. Fitness trackers can help with the simple job of quantising your exercise which can help you keep pushing yourself. None of this is a panacea to laziness, but these do give you spurts of motivation all through your day which can prove to be rewarding.

3. Eat a balanced diet

Various belief-driven diet systems are all the rage these days, from keto to paleo to veganism. But to have a tunnel vision in this area is to cripple yourself. While there are several reports of how specific dietary forms worked for specific people (you will find enough people telling you a type of diet worked for them as well as failed them) there is a key aspect missing that nobody seems to be talking enough about that works for everyone: a balanced diet.

Back in school we would all have been taught the idea that it is not what you choose to eat or not eat on principle but how balanced you make each of your meals that really matters. While dieting types can quickly become a case of overthinking, making sure you eat a balanced diet is easy. There are ample recipes to try, and you can try a paleo or vegan recipe if you really like without actually becoming a vegan or paleo dieter, all the while focussing solely on eating a balanced diet. Make space for any reasonable restrictions such as allergies and simple dislikes.

For great updated information consult your school textbook or, on a more serious note, visit the British Nutrition Foundation website that reasonably details everything you need to know about eating a balanced diet, backed by more science than any belief-based dieting. Also consult The Eatwell Guide for a great overview.

For a more specific discussion on eating proper meals to fight PCOS consult the Center for Young Women’s Health at the Boston Children’s Hospital—whose sole purpose is to ‘provide teen girls and young women with carefully researched health information’. On their page discussing nutrition for PCOS the Center explains—

You don’t need to go out of your way to buy special foods. Just like with any healthy eating plan, your meals should include a balance of vegetables, fruits, whole grains, plant–based protein, lean meats, and healthy fats. Most foods fit into a healthy eating plan for PCOS.

There is always a warning against consuming sugar which everyone on the planet happily agrees is a bad thing. But there is also a reminder about what one should try to eat:

Carbs (carbohydrates) give your body energy. Some people think that eating carbs will make them gain weight, but carbs will make you gain weight only if you eat more than your body needs. Many other important nutrients like vitamins and minerals come from carbohydrate foods, so eating no carbs is not a good idea … Protein foods such as beans, hummus, nuts, peanut butter, tofu, eggs, fish, chicken, meat, and vegetarian meat substitutes, and fats such as olive oil, nuts, and avocado are important parts of a PCOS–friendly eating plan … (Should I avoid dairy, sugar, gluten, or soy?) There is no current scientific data to support restricting or avoiding specific food groups or types of foods in order to improve PCOS symptoms … You should aim for a way of eating that has a balance of protein, healthy carbohydrates, and some fat.

There are also pointers on what to eat instead of sugary foods, how to read nutrition labels, and of course why exercise is a key partner to maintaining a good diet if you want to fight PCOS.

Remember that these ideas come not from us but from recognised medical and nutritional institutions around the world, backed by ample scientific data, so this is not blind advice you read on a random website. But here is something we believe is key to healthy eating: cheat meals aside, the only way healthy eating habits will work for you is if you adopt habits that instantly become integral parts of your life rather than awkward additions and subtractions in your day that you need to go out of your way to fulfil.

4. Go easy on yourself

Exercise and a proper diet are not hard, but they are not the easiest things to do either. Consistency is key but on the rare day that you miss out on something, or on the week that you struggle to make these your habits, it is important that you go easy on yourself. Nothing comes of bashing oneself. Try instead to push harder the next time round and you will eventually get to it. Keep your effort slow and steady; realise that even a 5% drop in weight (about 4 kg or 9 lb for overweight women of avergae height) can prove effective at reining in the negative effects of PCOS.

It helps to observe the two-time rule here: never skip a habit twice in a row. Missed your exercise today? Make sure you push yourself the following day and never let a two-time chain form. Ate an unhealthy meal this afternoon? Make doubly sure you eat well tonight. Constantly picking yourself up and not dwelling on what you missed will help you make exercising and eating healthy an integral part of your day.

Spousal and/or familial support comes handy at such times too, but remember that the trick is to not dwell on it. Do not dwell on it if you did not workout today; do not dwell on it if your partner ate something too oily for her own good. Acknowledge it, plan to avoid it next time and move on. This way you are energetic mentally to rein yourself in; dwelling will only drain you out.

The (lack of) science behind PCOS

Underfunded research

The high rate of undiagnosed cases coupled with the lack of awareness of the broad consequences of untreated PCOS has led to stagnation in any scientific development regarding the problem. Most governments allot for research on PCOS less than a tenth of the funding they do for other health conditions. Some also believe the overlap of ‘metabolic, hypothalamic, pituitary, ovarian, and adrenal interactions’ may be to blame for why so few scientists are equipped to research PCOS.

On the field too, a quick look at women with PCOS will show how fuzzy the knowledge is, from great diagnoses to dimissal to abject ignorance—see Jen Bell’s collection of testimonials from women with PCOS on Biowink’s Clue. The underlying point here is to at least read about, if not interact, with other women who have PCOS. Known as cysters reading about others experiences—within limits of course—can help women with PCOS regain perspective about their symptoms and realise that they are not alone.

Communities of ‘cysters’

As part of research for this essay and to see how better one can help a spouse with PCOS [V.H. Belvadi] joined the PCOS Challenge, Inc. group, a worldwide nonprofit support organisation for PCOS—which also allows men seeking to support someone with PCOS into their fold. This quickly proved that there existed a third downside to the the lack of good science in this area: the strong self-grown communities of cysters on the web means there is little to no curation of discussions between women who are living with PCOS and most networks are prime real estate for misinformation.

The keto industry in particular has capitalised on this setup, spreading testimonials and funding articles to be published across the internet, despite doctors warning against such diets—and the keto diet in particular. Liz Schonthal, who has a degree in psychology and nutrition, and a ‘passion [for] helping women with PCOS’ clarified on the support group saying—

There is no evidence to cut out gluten or dairy for every person with PCOS. Some people have intolerances, but cutting out a food group unnecessarily only causes more stress. Cutting out carbs in keto may result in short term weight loss, but is not sustainable for the vast vast majority of people and this means that is just another diet than ends in carb cravings and weight gain.

There are other testimonials too, many anonymous, that can be quite encouraging to women with PCOS. But the basic principles of dealing with this mentally are simple: know that there are cysters around the world, know that you can connect with them if you choose to, know that nothing replaces good exercise and healthy eating and that there are no magic diets, know that the science is slime and misinformation—intentionally or otherwise—is rampant, and know that by talking to your spouse or family and your doctor dealing with PCOS is perfectly possible.

Finally, as Dr Gretchen Kubacky points out, ‘PCOS can actually be a source of fun and gratitude. You might discover that working out together, or cooking healthier meals together, is good couple’s time.’ We are inclined to agree. But whatever you do, make sure you never let PCOS become the focus of your life: workout and get fit for yourself regardless of PCOS and the symptoms will take care of themselves. Work on yourself and let PCOS be a mere bystander.