Advocating For Yourself With PCOS

In collaboration with Tom and Rachael Sullivan (@MealsSheEats)

Medically Reviewed by Allara Medical Advisor Dr. Beth Rackow

Have you recently experienced symptoms commonly associated with PCOS? Are you concerned your hormones may be unbalanced in some way? Have you been diagnosed with PCOS and don’t know what to do? Have you been told the only answer for your PCOS is birth control? If the answer is ‘yes’ to any of these questions, then this is the resource for you.

Unexplained physical changes are almost always distressing, and as we all know, navigating the healthcare environment as a woman can be particularly challenging. That’s why it’s important to – as much as possible – use information and knowledge to empower yourself, as well as advocate for both your physical and mental health. In this guide, we’ll be covering the following essential topics:

• How to know if you may have PCOS
• What if you don’t have the main symptoms?
• Advocating for yourself with PCOS
• Questions to ask your doctor
• What to do if you’re not getting the answers you need/want
• What PCOS care and management options you have

Let’s dive in!

How to know if you may have PCOS

PCOS has a number of physical side effects which often manifest themselves as a result of the inflammation, insulin-resistance, and/or hormonal imbalances that characterize this condition.

So how is PCOS typically diagnosed?

Well, the diagnosis for polycystic ovarian syndrome is made based on the presence or absence of the following criteria:

• Irregular menses (periods that occur less than 21 days, or more than 35 days apart)
• Elevated androgen levels
• Typically evidenced by high testosterone or DHEA-S levels in the blood, or through physical signs of this hormonal imbalance, such as increased dark hair grown on face and body (aka hirsutism)
• High cyst count on ovaries
• Having any cysts on your ovaries is not necessarily a sure-fire sign of PCOS, but rather the presence of a high number of cysts

It’s also important to note that when evaluating the above criteria, other potential diagnoses should be explored and ruled out as more data from diagnostic work comes to light. It’s also worth pointing out that not all doctors agree on which combination of criteria warrant a polycystic ovarian syndrome diagnosis: some experts believe that any two of these three checkboxes will do, while others believe that as long as the presence of elevated androgens is identified in the blood (or their effects are noted on the skin), then only one of the remaining two are necessary.

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This naturally brings us to the next question many women wondering whether they have PCOS have:

Is an ultrasound necessary?

Our answer is: not always. Your physician may order one, or you can request one. Keep in mind though that it may be the case that you display strong PCOS symptoms that your provider feels it is unnecessary, and so they may diagnose you with PCOS without it. Because PCOS is a condition, the sole presence of polycystic ovaries (determined by the presence of 12 or more follicles on an ovary, measuring 2mm to 9mm in diameter) is not in and of itself sufficient for diagnosis.

That being said, it can be useful to take a diagnostic test to provide more insight into your symptoms. Sign up for Allara’s test here.

What to do if you don’t have the main symptoms

This is fairly typical! Not everyone shows the “main” symptoms of PCOS, such as weight gain, excess facial hair, irregular cycles, and ovarian cysts.

If you are concerned that you may have PCOS, we highly recommend you ask your doctor to test for it. Unexplained physical changes may be PCOS, but they may also be something else: your health is a critical priority, so don’t put off making an appointment!

In the meantime, while you wait to meet with your physician, try to track your symptoms. This can be as easy as keeping a dedicated notebook or writing in the Notes app on your phone daily. That way, when you meet with a physician, you have as much concrete information as possible to share with them (more on how and what to track later in the article).

Advocating for yourself with PCOS

Unfortunately, some women who visit their doctor with signs of PCOS are brushed off, leave the appointment feeling unheard, or receive a positive diagnosis, yet walk away with zero resources as to how to manage their symptoms.

For the above reasons, we’re offering some insight into how you can ensure your physical, emotional, and psychological needs are met as you undergo your PCOS journey.

1. Get labs done

It’s extremely difficult to improve on something that isn’t measured. That’s why it’s important to have a baseline of what your labs are so that you can track progress with managing your symptoms.

Some recommended labs are:

• Reproductive hormones:  FSH, LH, estradiol, anti mullerian hormone
• Androgens:  total and free testosterone, DHEAS
• Metabolism:  hemoglobin A1C, cholesterol panel, insulin
• Other labs:  TSH, vitamin D, complete metabolic panel

If your doctor cannot do this, you can schedule a virtual consultation and test. In the case of Allara, for example, doctors can help study and diagnose vitamin deficiencies, monitor your hormone levels, check for signs of prediabetes, check for insulin resistance, monitor inflammation levels, check your thyroid function, and more.

2. Know your options

Too often, PCOS symptoms are swept under the rug by a blanket tendency to prescribe birth control. But not all women can take hormonal birth control, for various genetic and personal reasons, and if you are trying to conceive, then this certainly isn’t an option.

If your doctor only offers birth control right off the bat, make sure to inquire about any other treatments they have tried and seen great success with. What does that treatment include? What kind of approach does it take? Does it fit in with your lifestyle? What are realistic results you can expect, given how previous patients of theirs have fared?

Allara’s Medical Advisor, Dr. Beth Rackow, has further insight on this discussion with your physician, Dr. Rackow points out that, “lifestyle adjustments are equally, if not more important, than medication.” However there are three different categories of medicine that can be utilized, alongside lifestyle changes and diet:

• Hormonal contraceptives
• Anti-androgen therapies
• E.g. spironolactone, minoxidil
• Medications to treat metabolic dysfunction and weight issues
• E.g. metformin

3. Choose your doctor carefully

Ideally, the doctor who advises you on how to manage PCOS symptoms has expertise in treating endocrine system disorders or women’s reproductive disorders (PCOS falls under both categories).  You can find out this information by googling their name and certification; oftentimes you will find their educational history and areas of expertise. When you speak with them on the phone or in their office, get a feel for not only their style of care but their philosophy on how to manage PCOS. See if it aligns with yours.

For instance, if you know you want to take a holistic approach to PCOS, then consider a doctor that will also take a 360 degree approach to your health. Ask them what type of treatment plan they typically recommend. In the above case in which you want to take a holistic approach, we would expect them to bring up at least one or two of the following: lifestyle changes, diet changes, supplements, medications, and therapy. From there, inquire as to how all these components will work together.

Equally, another way to gauge if a doctor you meet with is the right fit for you is what they don’t say. Tick off whether they have asked you about the following:

1. General health background
2. This includes any previous medications you have taken
3. Labs and how they intersect with diet and lifestyle
4. Nutrition supplements
5. Sleep routine
6. Exercise or movement habits
7. For instance, do you work a desk job, or are you on your feet all day?
8. Foundational eating habits
9. Dietary restrictions
10. What are your goals/ what is your biggest concern with your PCOS?
11. Do you want to lose weight, manage acne, have children etc?
12. Do you have vitamin and nutrient deficiencies?

Questions to ask your doctor

Now we’ve covered how to advocate for yourself, here are some quick go-to questions that you may want to ask your doctor in that first meeting:

• What criteria do you use to diagnose PCOS?
• How would you describe your approach to treating PCOS?
• Will you run labs and diagnostics? What will those monitor/track?
• How often do you recommend we meet to take labs, discuss progress, etc?
• Do you have recommendations for further resources I can consult on the topic of PCOS?

Quick note here: try not to feel anxious or ‘pushy’ when asking these questions: this is your physical health. You are entitled to take as much time and consideration as you need when deciding on a provider that will be the best fit for you.

What to do if you’re not getting the answers you need

Unfortunately, it’s all too common for some providers to simply diagnose patients with PCOS, prescribe a form of birth control, and send them on their way. But if you don’t want to take hormonal birth control, or you want to take a more holistic approach to managing PCOS, then know there are plenty of options out there.

Here is what we recommend you do if you’re not receiving the time, attention, or resources you deserve:

1. Get to know your body and your goals

Start tracking your symptoms. Paying attention to and noting how your body feels after eating certain foods, doing certain exercises, and at certain times of the month are all critical to understanding your PCOS symptoms better.

Try to track your symptoms along with your menstrual cycle (including cramps and PMS) and monitor things like how often you are menstruating, if you experience spotting, and how long a typical period lasts. Knowledge is power, and the more you know your body, the better you can take care of it and understand its needs!

You may find it is useful to track certain components of your lifestyle, such as how much sleep you get each night (note when you feel well-rested, and when you feel like you’re running on fumes), feelings of anxiousness, acne/breakouts, as well as cravings. Keep in mind this is still important, even if you don’t know if you have PCOS yet! This type of tracking may clue your doctor into what is going on, if it’s not PCOS.

Set your own goals. When managing PCOS, and advocating for yourself, it’s important to turn inward to evaluate your goals. Do you want to be in tune with your body, and understand what it needs long term? Do you want to prevent long-term health problems, like diabetes and heart disease? Are you interested in connecting with others who understand the challenges you’re going through? Whatever you want to get out of your own PCOS journey, write it down. Keep this in mind as you choose a provider.

In setting your own goals, we’ve created the following list of prompts. These may be useful in introspecting and identifying not only what you want from your PCOS journey, but what is realistic and in keeping with your lifestyle:

1. What lifestyle changes are attainable for you (sleep, nutrition, diet) and what are not (exercise, eliminating food groups, etc)?
2. What are the most prominent symptoms causing you distress?
3. What is your most prominent goal in managing your PCOS (and if you have multiple symptoms, which is most important)?
4. Do you want to get pregnant?
5. Is your cycle regular or do you need help regulating it?

2. Consider changing physicians

Give yourself permission to change doctors if your current one isn’t working for you.

There are plenty of great providers out there: choose one that is in line with your approach to PCOS, and who understands and listens to your concerns!

3. Consult evidence-based, helpful resources

Luckily, the internet is full of great information on not only what PCOS entails, but also how to manage it.

Allara’s Nutrition Evidence Library is a great place to find easy to consume, cohesive insights on what foods may prove beneficial to your body when managing PCOS. Allara’s blog also contains a bunch of information on things like exercising with PCOS, managing PCOS-related hair loss, supplements for PCOS, and way more. Similarly, Meals She Eats has PCOS-friendly recipes that are not only a snap to make, but also delicious and nutritious!

While taking advantage of helpful resources, please avoid being pulled into the trap of crash dieting (which is just as dangerous as diet culture and the products it promotes).  There is a world of misinformation on the internet about what to eat and what not to eat for PCOS. There is no “diet” specific for PCOS and there is no one-diet that is going to work for everyone. What works for one person may not work for another. Cutting out large food groups without basis can lead to restriction, binging, and anxiety around food choices. We would suggest incorporating a variety of nutrients into your diet from fruits, vegetables, and whole grains. If you think you may have an allergy or intolerance speak with a medical professional about an elimination diet to see if your symptoms improve or change while testing this.

If you are interested in getting started with Allara you can check your eligibility here.