This summer, I shared a post discussing hirsutism, which is the excessive growth of facial hair in women. While my intention was to talk about it in relation to having spent my teen years and early twenties being bombarded by articles focusing on how to get rid of it rather than what causes it, it evolved into self-discovery behind the scenes and ultimately led me to schedule a doctor's appointment and get some things checked out.
In September 2020, I was diagnosed with Polycystic Ovary Syndrome (PCOS).
I touched briefly on PCOS in my hirsutism post since excessive facial hair can be an indication of the condition, but since being diagnosed, I wanted to do some more digging because while this is a relatively common thing, it's not something I had even heard of until I started researching for that first blog post. Similarly, I wanted to share my experiences. Personal accounts from those with PCOS have been helpful while I'm learning about it because while there are common symptoms, the experience can be different from one person to the next and just looking at medical journals alone have sometimes made me feel more like just another dot on a statistic than someone dealing with PCOS.
And to put my experiences out there to let others know they are not the only one dealing with this.
I am not a medical professional, but instead someone with access to the internet. However, since my last post on the subject, I have been diagnosed with PCOS and can speak from my experiences. The information as far as numbers go is taken from reputable sources linked throughout.
Please do not use this post as a means of self-diagnosis. This is one experience out of many and is bound to be different than others.
Talk to your doctor.
Do your research.
What Is PCOS?
Polycystic Ovary Syndrome is a condition that affects a woman's hormones.
While there hasn't been a single cause identified, high levels of androgens are a factor. This excess of androgens can lead to hirsutism and impact the reproductive system (hence the O being Ovary).
Summarizing sex ed., ovaries are oval-shaped glands that produce egg cells. A polycystic ovary can be enlarged or contain immature follicles, meaning that these egg cells are not released. This can lead to subfertility or infertility.
PCOS is not just limited to the reproductive system and can increase the individual's risk of Type 2 diabetes and cardiovascular disease, both related to metabolic syndrome.
The American College of Obstetricians and Gynecologists (ACOG) also mentions that some women with PCOS can develop a condition known as endometrial hyperplasia, in which the lining of the uterus becomes too thick, which in turn can increase the risk of endometrial cancer.
Sleep apnea and other similar conditions are sometimes associated.
Due to the hormonal impact, depression and anxiety may also be linked.
I think the reason I took so long to realize I have PCOS is simply because I didn't know it was a thing. As Healthline notes, "Many women have PCOS but don't know it. In one study, up to 70% of women with PCOS hadn't been diagnosed."
I didn't wake up one morning and start experiencing these symptoms suddenly. Rather, I didn't realize they were symptoms because they were things I had been dealing with since puberty if not longer.
I've always been on the heavier side. My weight has not changed much since high school. I've had dark underarms almost as long as I can remember, to the point a vacation ritual was soaking me in the hotel hot tub and trying to scrub them "clean."
Facial hair is something I've just put up with since I was thirteen or so, and the same goes for the hair on my stomach. According to ACOG, hirsutism is present in more than 70% of women with PCOS. For me, it's especially present on my chin and a patch on my neck.
Acne was a thing I dealt with on occasion before a seemingly endless breakout struck me in college, and it would flare up in the days leading up to and during my period.
My menstrual cycle was all over the place. I've never been able to track my period even with the use of an app, and the length of my period varies.
Because of all of this, they didn't seem like symptoms or signs of anything to be worried about. They just seemed normal quirks of mine, like the birthmarks on my back. In the case of my acne and the characteristics of my cycle, I always chalked it up to stress, and I was on an oral contraceptive to combat the former after my doctor at the time diagnosed it as "hormonal acne" related to puberty and left it at that.
It wasn't until I was researching hirsutism specifically and seeing all of these things on a list of signs you might have PCOS that I started looking into the condition.
As I was working on my original post and researching the potential causes of facial hair like mine, I started looking more into PCOS because it kept coming up.
It started as casual browsing and general curiosity but shifted to something of an inexplicable necessity and a need to know what this was. Several articles I found suggested talking to your doctor if you had 2-3 of the listed 6 or so symptoms. In most cases, I was checking off most if not all of the boxes, often only just realizing these things were linked to something like PCOS and not actually normal.
I'm not usually one to self-diagnose. Let's not forget the time WebMD identified a cold as postpartum depression when I have never been pregnant.
However, I felt almost certain PCOS was something I had. The more I looked into it, the more it felt this wave of realization hitting me.
I was nervous ahead of my doctor's appointment, not sure how to approach this. I didn't want to be that person who walks in and acts as through they know more than their doctor because the internet said this/that/the other thing.
Thankfully, my diagnosis came within the first couple of minutes after the basic new-patient stuff. My new doctor knows someone who also has PCOS and identified it as soon as I mentioned my facial hair, acne, and the typical nature of my period.
I did have bloodwork done to confirm the hormone imbalance, which at that point was more of a formality. The results for that came back within a couple of days and confirmed a high amount of hormones contributing to my hirsutism as well as higher than normal blood sugar, which can also be associated with PCOS.
With there being no cure for PCOS, much of the treatment of the condition seems to be focused on targeting specific effects depending on what works for or matters more to an individual. This might include fertility treatments for someone struggling to get pregnant or being prescribed contraceptives to regulate the menstrual cycle.
I'd been working on managing my acne well before being diagnosed. Along with that, my main concern at this point in time is my facial hair, which was the thing that led me to learn about PCOS. I've been keeping up with my usual methods of tackling it, but my doctor also added on a medication intending to slow the growth. It's too soon to tell how well this has been working, but I'm hopeful (and saving up for electrolysis).
One thing I was not expecting was how easily it's been taken by relatives and friends. I've decided it's something I want to be open about, especially since it can be hereditary and might have a relative who may want to get checked out because they hear I have it, but also because it's something I want to not only cope with, but accept.
Often, people respond with oh yeah, I've heard of that or I think know someone with that, which really makes me wonder how I went so long not being in the loop. Or they might do some research on their own to learn more, which I especially appreciate because it's a sign of caring and wanting to understand rather than just dismissing it.
I recognize how fortunate I am with all of this. Some people have to go to several doctors before getting any form of answers, or their family and friends may be more flippant because it doesn't affect them directly or for some other reason. I don't take this for granted.
On a similar note, I know some of my symptoms are mild compared to how another person may experience them. As is the case with many medical conditions, I don't face all of the symptoms of PCOS or with the same severity. Comparatively, one acquaintance mentioned knowing someone with PCOS who doesn't show signs of hirsutism whereas mine is more prevalent and harder to manage.
Mainly, I'm glad to have finally identified PCOS for what it is and how it has affected me. I didn't have too difficult of a time accepting the diagnosis because I went into my appointment expecting it, but also because of how much sense it made while I was looking into this condition.
In short, it feels like I have finally discovered a piece of myself and have begun to understand it, and it is such a relief to have answers to a question I had no idea I needed to be asking.