For the month of June, I am going to highlight women’s health because it is a matter that is important to me and it is not talked about nearly enough, especially in the ways that it needs to be. Please prepare for brutally honest conversations that dive deeper into what it is like to work through female-related diseases, conditions, and infections. These posts will include interviews with women in their 20s who are bold and confident enough to share the “not-so-glamorous” details of their lives, hoping to normalize our bodies and the things that it does a little bit more.
And, who better to start with than me?
With this post, I will set the tone for the rest of the month–honest, yet deserving of respect.
Anyone who feels inclined to comment hateful or rude thoughts will be removed from the conversation. All other comments and questions are encouraged. I want this to be a space where people of all ages and all genders can feel comfortable coming and asking questions they may be scared or shy to ask on a normal day.
With that, let’s begin.
At the age of 16, I was diagnosed with PCOS (polycystic ovary syndrome) and endometriosis. Since then, I have gone through at least eight different gynecologists, two surgeries, four birth controls, three different antidepressants, an unrealistic amount of skincare regimens, and so on.
Polycystic ovary syndrome is a disorder that is caused by an imbalance of hormones in a woman’s body. The condition is specific to women because ovaries are specific to women. Often, with PCOS, the egg that the ovaries create each month never gets fully released which results in frequently missed or irregular periods. Additionally, the eggs can form in a way that causes them to stay attached to the ovary, rather than release–this is what causes the cyst.
All women can (and usually do) get cysts at some point in their life. PCOS, however, causes them to be recurring and significantly more painful. As I have met more women with the diagnosis, other symptoms have proven to be recurring as well.
With PCOS comes ridiculous mood swings because of hormonal imbalances. For women who genuinely experience anger, sadness, and brain fog like I do, the term “mood swing” can be a very real trigger. It feels like a dismissal of pain, or very obvious that certain people think you are using the condition as a cop-out to be rude. Not the case.
The most frustrating part about PCOS, though, is the lack of physical symptoms which brings me to a further explanation of what endometriosis is; often the two go hand-in-hand.
The endometrium is the lining of the uterus, or the “womb,” in a woman’s body. Endometriosis happens when the endometrium grows outside of the uterus or sheds to other organs rather than flowing out of the woman during her period. Someone can have the tiniest amount of endometriosis growth and be in excruciating pain, while others can have minimal pain and an entire ovary covered in it.
Not a lot of people understand endometriosis–doctors included. Similar to PCOS, the discovery and diagnosis usually come with surgery.
With PCOS, doctors use an ultrasound to see the cyst that has formed on one’s ovary. In my case, at 17-years-old, it was the size of a grapefruit and required emergency surgery to drain so that it would not cut off circulation to my ovary. The pain is indescribable. It feels like 500 pounds of weight is clinging to the inside of your organs. Laying down is made to be strategic because certain angles and positions hurt worse than others. I would cry a lot and for absolutely no reason.
Actually, there was one time I had a cyst and I was rereading the Twilight Saga. When I got to New Moon and Edward left for Italy and I knew he was not going to be in the rest of the book–I cried.
The pain makes everything irrational and there is nothing more irritating than someone telling you that you are not in pain simply because there is no external evidence of it.
Endometriosis is even trickier because, as of right now, there is not a single piece of medical machinery that can be used to diagnose the condition. NOPE! Not one.
In order to actually see the improper growth of the endometrium, doctors need to be physically inside of you and look at the organs. Typically, this is done with a laparoscopy–a surgical procedure where the surgeon makes tiny incisions through the walls of the abdomen in order to more closely observe the internal organs.
With both of these conditions, there are unflattering aspects to life that I know we (the diagnosed) do not talk about publicly, but I can confirm that I have met several other women who experience these same problems in addition to pain.
The first is facial hair growth. Totally not flattering, and totally not sexy, but it's the truth. Tiny black hairs will pop up in places nobody wants them to and, often, the face falls victim.
This can impact intimacy levels, especially when first getting to know someone. I became hyper-fixated on plucking, plucking, plucking–crawling into my bathroom sink to be closer to the mirror to get a better view and not miss anything.
You know the picture-perfect movie scene where the prince caresses the princess’ face? That does not live up to the hype when, instead, I am in my head hoping the person doesn’t feel anything that is not supposed to be there. It’s embarrassing and it shouldn’t be, but that’s because we do not normalize talking about it.
Next is sex.
It doesn’t always feel good and, actually, sometimes it hurts pretty damn bad. On top of that, I cannot even begin to count how many “internal exams” I have had at various doctor’s offices or emergency rooms. This layer of something being examined “down there” by a stranger definitely takes the excitement out of being touched “down there” by a stranger. So, go ahead and cross “hook-up culture” off the list of “enjoyable.”
I think this is why I often favor emotional connection over physical touching and, I do not have data to back this up, but I would dare to say most women with these diagnoses can agree, and perhaps, even women without the diseases. Have you ever stopped to reflect on the fact that women have specific doctors and men go to a primary physician for literally everything? There’s no doctor that specializes in “balls,” but a whole field of study directed toward the uterus.
The point is, women are regularly touched by people who are basically strangers to us (at least once a year by a trained doctor, and don’t get me started on drunk strangers at bars). Then, throw in a layer of pain or confusion about one’s own body and the idea of sex is no longer “sexy.” It comes with the daunting task of having to explain to someone why you cannot do certain things, or why your body may bleed or cramp up in the middle of something that normally does not seem to be problematic.
Additionally, I know so many other people with PCOS and endometriosis but none of us know how to talk about it with men. It stems from honest biological differences, sure, but on top of that, society does not normalize talking about female bodies in the right way. We talk about it, but we only ever sexualize it.
Untalked-about-symptom number three: a general resentment toward the pain and, thus, dismissal of one’s own sanity. Each woman I know who has PCOS and endometriosis has expressed to me that they “feel like they are going crazy” half the time. We get sent home with pain pills instead of answers and passed from doctor to doctor faster than we can blink. There is an insane lack of knowledge about these conditions and certain doctors pass you to the next before you even have the time to tell them a full medical history.
It’s exhausting and I think there is inevitably going to be the discovery that most women with these diagnoses develop some form of depression or disassociative disorder in order to manage and get through their days. The lack of understanding of our own bodies along with the lack of passion to fund more research is very disheartening. It is hard to wake up and have hope that maybe, just maybe, one day there will be a cure.
Nothing would mean more to me than continued research. More discoveries as to why endometrium spreads in the wrong direction and how to stop it from happening. More information about our hormones, rather than shoving more down our throats in an attempt to fix the problem.
The Endometriosis Foundation of America is a great resource for women with endometriosis and PCOS. It also serves as a one-stop-shop for things like current studies, breaking news, and collection spot for donations toward more research. Click here to donate, or check out the site!