Welcome back to Woven Well podcast. Today we’re doing another 101 class on a topic that I’ve received a lot of questions about - both over the years through my fertility care work and over the past few months on our @wovenfertility Instagram page. And I understand why! Just wait until we get into all of this - if you have questions about PCOS, you will quickly realize that you are not alone!
But hopefully this episode can be a solid place to start in understanding what it is and what treatment is available. If you’d like a visual copy of this information, check out our PCOS 101 resource at wovenfertility.com/resources.
So, let’s start at the beginning! What is PCOS?
PCOS has gone through a lot of definitions since it was discovered in the early 1930s. You may have heard one or many of them over the years. We know that androgen excess is key, but how important are polycystic ovaries (what the syndrome was actually named for)? What about ovulatory issues? Can you have some without the others? Is the condition one specific thing, or an umbrella term that can cover a lot of ground?
The most up to date explanation of PCOS described it as 4 different categories that cover a broad range of possibilities. These categories are called phenotypes, and it can be helpful to know which one you fit in, if you’ve been diagnosed.
You could have hyperandrogenism, ovulatory dysfunction, and polycystic ovaries - phenotype A.
You could have only hyperandrogegism and ovulatory disfunction without the polycystic ovaries, phenotype B.
You could have hyperandrogegism and polycystic ovaries without any issues ovulating, phenotype C.
Or no issues with hyper androgens at all, and just polycystic ovaries and ovulatory issues. That’s phenotype D.
So it’s not only one very specific thing, and there’s still a decent amount of debate about the definition and even these phenotypes, which are still considered fairly young in the medical world; They’re still studying how effective they are and determining if any of them should even be classified as a new condition, outside of PCOS.
For years, one thing that’s been pretty consistent about PCOS, though, is hyperandrogenism. Hyperandrogenism is when a woman experiences an excess level of androgens (which are certain sex hormones like DHEAS or testosterone) and we aren’t able to find another cause for this excess.
Because, there are other conditions that can cause high levels of androgens - like having too much prolactin (called hyperprolactinemia), adrenal hyperplasia (which is often a genetic condition), thyroid disease, etc.
But when an identifiable cause can’t be located, it often finds its way under the umbrella term PCOS.
A lot of the time, although it’s not 100%, when you have these high androgens, your body will show you symptoms of that: extra hair growth maybe on your face, chest, abdomen, or back, issues with irregular cycles and anovulation, weight gain, hair loss, etc. Other times, you won’t notice many of these, or any at all.
And sometimes you can have some of these symptoms, but they’re not being caused by an excess of androgens!
So it’s understandable that it’d be confusing to know whether or not you have PCOS!
Add to this confusion the actual name of PCOS - polycystic ovarian syndrome - and you double the confusion. The condition is named after one possible symptom you may have (which is the abnormal growth of many tiny follicular cysts each cycle instead of just a few that can mature and possibly ovulate), but that is only found in 1 out of 4 women with PCOS.
AND the fact that you can have polycystic ovaries here and there in your life (even seen on an ultrasound) and you still not have PCOS! It really is no wonder there are so many questions about it all!
Let’s set aside the symptoms for a minute, because I think too much focus on common symptoms alone is where we get the false image of what PCOS “looks like.”
We look through the list of symptoms on WebMD and think, “I couldn’t have PCOS because I’m not overweight….” or “I must have PCOS because I’m overweight.” When there is no particular weight or weight category required for PCOS diagnosis. You can have a low body fat percentage and have PCOS. You can have a high body fat percentage and not have PCOS.
Weight, hair growth, acne, even polycystic ovaries: these are not what define PCOS. They are simply common symptoms. If you listened to our Endometriosis 101 episode, you heard how although painful periods are a major symptom of endometriosis, there are many, many cases of “silent endo” where no pain is experienced at all. It’s the same situation here. The root cause is present, even if the symptoms aren’t.
And PCOS doesn’t usually look exactly the same even in one person’s lifetime. She could start out without any symptoms, but develop them over time if the condition goes unchecked. In the same way, with treatment, symptoms and androgen levels could improve.
Instead, let’s focus on what your doctor may evaluate you for when looking at your reproductive health as it relates to possible PCOS.
First things first, they’ll want to do a basic hormone profile at the start of your cycle, typically 3-5 days into your period. This labwork will show levels of androgens like testosterone and DHEAS, as well as your ratio of LH and FSH, two other important reproductive hormones. (If you’d like to learn more about any of the major female reproductive hormones, be sure to go back and listen to our BASIC series.)
They may have you do an ultrasound during the follicular phase of your cycle to look at ovarian production and to evaluate the size of your ovaries. (Your FertilityCare Practitioner can help you to know when this is!)
They may ask you to have a glucose tolerance test to assess how effectively your body handles glucose and insulin. There is a strong relationship between PCOS and insulin resistance, both of which may increase your chances of developing type 2 diabetes at some point in life.
They’ll request a copy of your cycle charting to identify the health and timing of your ovulation and any other possible contributing factors.
Instead of simply knowing if you check the box for PCOS, they’re trying to get a comprehensive view of your overall reproductive health. Because even if you do have PCOS, it is not a one size fits all diagnosis. We can tell that from all the different categories or phenotypes associated with it! Individualized treatment is really important for overall health.
I’ll be honest that the topic of PCOS can sometimes get me a little on edge. Because there’s so much misinformation out there and I hate seeing how detrimental it can be to women. I’ve met so many ladies who have been told:
- Your PCOS is caused because of your weight. If you’d just lose weight, none of this would be an issue.
- You have PCOS so IVF is your best course for having a baby.
- You have PCOS? No big deal. We’ll just give you Clomid to make you ovulate.
- There’s no need to treat PCOS if you’re not interested in having a baby right now.
None of these statements are helpful or accurate. Weight alone did not cause your PCOS. IVF is never your only option. And PCOS is absolutely worth treating, regardless of whether you’re hoping to achieve a pregnancy or not.
So let’s get to the treatment. What can you do about it?
Here we have really good news. For most forms of PCOS, you can do a lot to improve it.
Let’s go back to the androgen issue: If your body is a rock star at making androgens, then it becomes about helping your body learn to regulate this production.
The most basic, available way is through dietary changes. Your nutritional choices affect your reproductive hormones? It’s wild, isn’t it? But what we eat, when we eat it, and how we eat it can actually make a big difference for PCOS specifically. That’s because androgens are a part of the endocrine system. The endocrine system sends out hormones to regulate specific organ function, like the thyroid, adrenals, and reproductive system. When one of these hormones is too high or too low, it may affect other systems, like the body’s metabolism, which then keeps the cycle going.
For instance, if you had high levels of the hormone insulin, it may affect your reproductive system’s ability to turn androgens into other necessary hormones like estrogen. This leads to an excess of androgens, which affect your insulin sensitivity. Insulin resistance prevents androgens from converting to other necessary hormones, and we’re stuck in a cycle.
So balancing what we eat, both in terms of type of sugar intake and quality of balanced nutrition, can play a significant role in both our short term improvements and long term health with PCOS.
You can find a lot of amazing information out there on balanced diets. But here’s my advice: Be careful what you take to heart. Look for the longstanding, stable education on well balanced nutrition and skip the fads. If you’re able, work with a registered dietitian who can create a specific plan for you and help you achieve your goals.
Insulin resistance is common among the PCOS community, and treating it as early as possible can help reduce your risk of cardiovascular disease and type 2 diabetes.
Dietary and lifestyle changes may be enough, or it may be beneficial to begin one or more medications. The most common being Metformin. Find a trusted doctor that will investigate a full picture of your health, and help decide what’s the best course - not only for right now, but for your long term health and wellbeing, too.
Some women choose to undergo a surgery called an ovarian wedge resection to help with excessive PCOS symptoms, especially when dealing with infertility. The success rate for pregnancy with this procedure has been as high as 66%. But there are also medicinal routes including ovulation inducing drugs like femara/letrozole and clomid that can help ovulation occur. This is where a thorough conversation with your trusted medical provider can be most helpful.
These are not the only treatments. There are extremely helpful supplements! There are additional approaches! There are other medications! We can’t go into them all, because - again - the treatment is an individualized approach.
And that may be the biggest takeaway from this episode on PCOS 101: It’s not a condition with one main symptom and one main treatment.
Find yourself a supportive health team who values how your specific body functions and are willing to investigate the full picture of your reproductive health to improve your overall quality of life. You don’t have to be alone in the journey.
But, also, you play a really important part!
The more you understand about how your body works, the better you can advocate for yourself. For instance, if you strongly suspect you have PCOS, but you’re told you don’t have PCOS simply because you don’t have polycystic ovaries on an u/s, ask for an early cycle lab draw to check your androgen levels. Bring in your cycle charting to show how late you’re ovulating or the possible signs that you’re not ovulating at all. You now know that diagnosis isn’t based on one u/s alone.
If you’ve been diagnosed with PCOS, you can make changes today that can begin to improve your symptoms. Evaluate your sugar intake, learn about balanced nutrition, begin mild exercise or walking 30 minutes a day, drink lots of water, get at least 7 hours of sleep. These things may seem basic, but they can make a big difference in balancing our hormones and improving our health — and that’s our goal for you at Woven Natural Fertility Care and through the education we provide on this podcast.
I do hope that this episode has been informative and helpful, even if it may not be as black and white as you once thought.
I’ve mentioned nutrition a few times, because it can play such a big part. But I’m not a registered dietician or a nutritionist. Don’t get your dietary advice from me, or anyone else who’s not! Next week we’re going to have a registered dietician on the podcast to talk specifically about how nutrition can help PCOS, and we’re going to provide additional resources from there.
If you’d like the key take aways from today’s episode in a visual form, remember there is a PCOS 101 resource at wovenfertility.com/resources.
Thank you so much for listening today as we continue to explore together what it means to be woven well.