Polycystic Ovarian Syndrome (PCOS) is a reproductive autoimmune disease that impacts approximately 1 in 10 women. Each woman diagnosed with PCOS deals with imbalanced hormones, frustrating doctors' appointments, and a lot of trial and error treatments. That being said, every PCOS experience is shockingly different, even though certain similarities remain.
How were you diagnosed?
Liv — Going into my senior year of high school, I lost my period for like a month and a half and then gained 29 pounds over the course of the next couple of months. My body completely transformed within a single summer and it was extremely hard on my mental health.
After getting a lot — A LOT — of bloodwork and testing done and seeing doctor after doctor, my gynecologist was the one who finally said, "Hey, your testosterone is off the charts and you have ovarian cysts, this is PCOS." And the rest is history.
Lil — I had lost my period for almost a full year. But that's not why I went to the doctor — I actually went into the women's clinic for an annual physical and to discuss the depression and anxiety that was overwhelming my life. When they asked me "when was your last period," (like they do in all women's check-ups), that's when they began asking more questions. Once I (and a test) convinced them that I was not pregnant, I immediately went through a lot of bloodwork and multiple ultrasounds, with the final result being "you have PCOS."
What are your physical side effects?
Liv — As I said, it started off with the weight gain and the loss of periods which is what helped determine my diagnosis. After about seven years with PCOS, I now experience a hard time losing weight, monthly cyst ruptures, water retention and swelling, and hormonal acne.
Lil — My only visible physical side effect was and is the loss of my period. This is something I still struggle with — while some women with PCOS have periods that last too long, my period needs major convincing for it to show up. This is an issue in hormone balance, but could cause problems in the future when it comes to fertility.
I also have cyst ruptures at least once a month and while you can't see them, trust me when I say they're lethal.
What are your mental side effects?
Liv — I experience a lot of anxiety for the most part. After I was diagnosed and had gained weight, I had developed an eating disorder which was very difficult for me mentally and physically, but eventually was able to get it under control.
Not being able to lose weight when you are trying to is also a mental struggle because when you work so hard and you can't see yourself physically or mentally start to change or improve, it's terribly defeating.
Lil — My PCOS shows itself the most within mental health struggles. As balanced hormones are so crucial to keeping your mental health stable, it's not uncommon for me to be down, up, angry, or confused as to why my body is doing what it's doing.
What is your biggest side effect?
Liv —The biggest and hardest side effect for me right now is the fluid retention and edema I experience on a daily basis. I got engaged in May and at the start of the day, my engagement ring fits like a glove, and by the end, my hands are so swollen it hurts to make a fist.
Lil — Mental health swings are by far my biggest side effect.
What's the main thing you discuss with your doctor?
Liv — My swelling and inflammation have really increased over the past few months and I'm actually going to the doctor soon to talk about possible solutions for that. More regularly, I tend to discuss my cyst ruptures and irregular periods.
Lil — My doctor's main concern is that my period continues coming back. You wanna know how many TMI moments that woman and I have had? The list is long.
Each time I'm at the doctor, fertility comes up. Especially since my body has a hard time having a period (much less a regular one), there are many concerns my doctor has about infertility down the road. The chances of me conceiving are not great, but the chances of a healthy pregnancy are even lower. This is not uncommon for women with PCOS — reproductive diseases cause a lot of heartbreak in infertility, miscarriages, and complications within pregnancy.
Even if you do not want to have children biologically, your doctor will discuss this with you. It's their job to make sure you have all the information you need for your options later. It was so weird talking about having babies as a single, newly diagnosed 22-year-old, but all of my doctors have been incredibly kind and informative in these conversations.
How do you treat your PCOS?
Liv — I take metformin and spironolactone medications. The metformin is known to be a medication to treat type two diabetes, but it was prescribed for me to help with my insulin resistance with PCOS. The spironolactone helps control acne, fluid retention, etc. (another reason I am seeing a doctor for my swelling since this medication should be helping it.)
Additionally, I try to walk daily, to help keep my cortisol (stress hormone) under control, and avoid dairy.
While a lot of women treat their PCOS with a birth control pill, this was not an option for me because of a blood disorder I have that doesn't allow me to have excess estrogen that will lead to blood clots.
Lil — When I was first diagnosed with PCOS, getting a period was priority number one. My doctor gave me a steroid pill with my birth control prescription to "kickstart" a cycle — it didn't work. She then increased the steroid dosage for the next week — it didn't work. Finally, the third time she increased the steroid I got a very short, very light period. It wasn't what she was hoping for, but it was enough to stop pumping my body with steroids (something neither she nor I was thrilled about). Now, I take a specific birth control pill with extra estrogen to continue forcing my body to have a period.
I do my best to live a balanced life — while some women with PCOS cut gluten or dairy from their diet, my doctor and I have discussed it and not found it necessary within bloodwork or testing. This being said, I do notice what I put into my body. I eat a lot of fresh produce and tend to eat vegetarian about 80 percent of the time. This, with a regular exercise routine, helps me contribute balance to my overall health.
What's the thing you worry the most about?
Liv — Even though I am not anywhere close to here yet, I worry that I won't be able to have kids or will have to go through a lot of fertility treatments in order to conceive. I definitely want to have children someday and as that inches closer to my life, it is on my mind more often.
Lil — My main worry is increased risk for future issues. PCOS patients are at a greater risk for endometrial cancer and ovarian cancer and that worries me.
What has PCOS taught you?
Liv — How much time do you have? I mean, after battling with PCOS for so long, I finally realized it was just a part of who I am and instead of fighting it off, I just have to treat my body differently to feel its best which is A-OK.
Is it annoying at times? Sure, of course, but I can be annoying too so it evens out.
Lil — That we desperately need more education about reproductive health, both in high school health classes and within federally funded research groups. The fact that PCOS is "a trial and error disease" just causes heartbreak and wears on a woman's body. I didn't even know what PCOS was until a doctor told me I had it — that should not be a common reality.