My PCOS Journey: What is PCOS?
To understand my journey, you must first understand PCOS.
Polycystic Ovary Syndrome, or PCOS, is an endocrine disorder that affects approximately 10% of those of us who are born with a uterus and ovaries. There are so many assumptions and misconceptions about what it means to have PCOS, so let’s take a closer look at the details.
To make things easier I am going to break this article up into sections. We will cover things such as the outer physical symptoms, how it can make you feel, and how it affects your mental health. Let’s dive right in, shall we?
The Outer Physical Symptoms
PCOS can affect you physically from head to toe. It is primarily a hormonal disorder and in most cases, it stems from insulin resistance. Insulin is a blood glucose-regulating hormone that controls many functions in your body.
In addition to insulin resistance, PCOS also usually includes an extra heavy dose of androgens. Androgens are male sex hormones, and although all females make and use androgens to an extent, those of us with PCOS have more than our share.
What do insulin and androgens have to do with the outer physical symptoms of PCOS? Well, everything. Let’s work our way from top to bottom so you can get a clear picture.
First up, our heads. PCOS can lead to male pattern baldness. We can start losing our hair, which leads to thinning and in some extreme cases, balding. Hirsutism, or facial hair, is also common with PCOS.
Acne is another common outer physical symptom. Adult acne sucks as is, but it is even worse when hormones lead to cystic acne on our faces and body. Cystic acne is harder to treat, leads to bigger lesions and scarring.
Moving on down, we get to the breasts. Tuberous/hypoplastic breasts are a common complaint of those of us with PCOS. In general, they are smaller, spaced further apart, tubular-shaped, and they often lack tissue.
An elongated clitoris and larger labia are also semi-common. There are no reported differences in sensation or ability to orgasm, however, that doesn’t mean that there are no negative effects.
The biggest affect PCOS has on physical appearance is often weight. Insulin resistance leads to obesity. It can be very easy to gain weight while feeling nearly impossible to lose it.
Some of the lesser symptoms that medical professionals often forget to touch on include excess body hair, including hairy toes, stretch marks due to fluctuating weight, and the connection to pilonidal cysts and Hidradenitis Suppurativa (HS), and other skin conditions.
How PCOS Makes You Feel
The outer physical symptoms already suck, but what’s worse is how they contribute to how you feel. In addition, there are several symptoms that manifest with no outward signs. That can make it hard to really explain to someone why PCOS is so hard to handle.
First, because of the insulin issues associated with PCOS, you can experience fatigue and exhaustion. You may feel perfectly fine one minute, and then BOOM! You are down for the count and ready for a nap.
The same insulin issues can also result in difficulty focusing and getting stuff done. You may struggle to get work finished, help your kids with homework, or even just to take a walk.
Speaking of kids, a HUGE symptom of PCOS is infertility. This may be primary or secondary, but either way, it is painful. There are very few things worse than being ready and wanting to have a baby of your own just to be told it can’t happen.
If your insulin levels and glucose are out of whack, you may end up feeling shaky, nauseous, and irritable. Your eyesight could also diminish over time. You need to see an eye doctor regularly, on top of your other specialists.
Now we reach the big one. Your period. It can go one of two ways. You may get no period. You may have to fight for every drop of blood and take medications just to get the flow started. Or, you may have the opposite problem.
Some of us get our periods too much. I, personally, have gone as long as a year with no more than 2–3 days in between bouts of bleeding. There can be huge clots, as well. In some cases, those with PCOS will also have endometriosis.
Sometimes, the heavy periods are associated with fibroids, which doctors say are not caused by PCOS. However, if you do experience heavy bleeding, it is worth looking into.
With the weight gain associated with insulin resistance comes another set of symptoms. These include the symptoms and problems associated with obesity in general. You may experience body pain, heart issues, and breathing problems.
Mental Health Issues Associated With PCOS
The mental health issues that face those of us with PCOS can be insidious. First, we are more prone to anxiety and depression. We also often present with the inability to focus or concentrate, which can lead to job loss or failing grades.
A lot of the problem stems from our sense of worth and physical appearance. Imagine losing your hair, growing a mustache, gaining over a hundred pounds in a year, and then having acne all over. It is devastating.
Add all of that to the fact that it is much harder for us to lose weight by traditional means. Meanwhile, we have a doctor in our ear telling us, “if you would just lose X pounds, you would feel better.”
Infertility is another pervasive issue in the community. It can easily lead to a downward spiral of feeling useless, worthless, and lonely. You may feel nobody understands what you are going through. Again, doctors will just keep telling you to “lose weight”.
What do they tell the skinny people with PCOS? I have often wondered. A friend of mine tells me that they just tell her to continue eating healthy and come back in a year.
Another huge issue is self-esteem. PCOS can make it hard to feel sexy, which can really put a dent in your sex life. A bad sex life can make it even harder to conceive, and it can lead to frustration between you and your partner.
I don’t want to minimize this point: those of us with PCOS often have terrible self-esteem. It is important to communicate with our loved ones that we need help, and we need to seek out professionals when even that won’t cut it.
Hope
Everything I have covered so far may sound terrible but fret not. There is hope. Every person who suffers from PCOS will not have every single symptom. In fact, most people don’t have all of the symptoms.
In addition, there are many medical and natural remedies that have been shown to help. From Metformin to Inositol, and all kinds of stuff in between, there is help out there for you.
There are social media communities and online forums dedicated to giving those of us with this condition a place to go and feel understood. You are not alone!
Moving Forward
PCOS may be a frustrating and complicated disorder, but it is not a death sentence. There is help out there for you. You do not have to let it run your life.
Throughout the My PCOS Journey series, I will be discussing everything from finding the right doctor, treatment options, and my own journey. I am still on this crazy ride, and I am learning new things every day.
My hope is that we can come together and make it easier for us to feel happy, healthy, and in control of our own bodies. Remember, we have PCOS. We are not defined by it.
