Hello again lovelies! We’re back for another Wildflower Friday and today I’d like to talk to you guys about something that’s very personal to me, but something that’s also incredibly important to talk about.
I was diagnosed with polycystic ovarian syndrome (PCOS) in 8th grade. From 5th grade, when I got my first period, to 8th grade, when I got my diagnosis, my periods were never normal and I didn’t know why. All I knew was that I would get maybe 5 periods a year and they were sporadic, and heavy, and painful, and lasted forever. I remember at one point in middle school, I had a period that lasted 10 days and I couldn’t move for at least 3 of those days because I was in so much pain.
PCOS runs in my family, so when I explained to my mom all about how weird everything was, she already had an inkling that I had it. But, we needed to get it confirmed so I could get treated.
So, I finally went to my doctor and the first thing out of her mouth was, “I think you have polycystic ovaries.” I got scheduled for some blood tests, and an ultrasound, a truly weird experience for a 13 year old, and had an appointment with a gynecologist. From there, my diagnosis was confirmed. They found low levels of estrogen, high levels of testosterone,and a bunch of cysts on my enlarged ovaries. Some small, some pretty large, and I finally learned why my periods had always been so weird and horrible. I was prescribed birth control and then sent home.
In most women, your ovaries grow cyst like things that release progesterone and estrogen and help with your typical menstrual cycle. With women, like me, who have PCOS, your hormones are completely unbalanced, so your ovaries grow a bunch of cysts that actually detract from the menstrual cycle. If left untreated, the cysts will continue to grow not only in numbers but in size and they can rupture which is unbelievably painful. To help treat my PCOS, I was prescribed birth control because that little pill is full of hormones which would help to regulate my hormones and control my PCOS. But, I’ll talk more about that later on.
At the time of my diagnosis, that was all I knew about PCOS. But now, 9 years later, I have done my research and I have learned a lot more and let me tell you, everything about this sucks.
PCOS affects 1 in 10 women, but 50% of those women will go undiagnosed. This is why I talk about this every chance I get. Because, when left undiagnosed and therefore untreated, PCOS can mess with so much of your body. PCOS can lead to insulin resistance and 50% of women living with PCOS will develop type 2 diabetes or pre diabetes before the age of 40. It can also lead to fertility issues (possibly even infertility), high cholesterol, depression, anxiety, high blood pressure, sleep apnea, and it increases your risk of endometrial cancer by 3x the normal rate.
PCOS affects all women differently, for example some very common symptoms are increased amounts of body hair including facial hair (go follow harnaamkaur on instagram she’s such an amazing woman), obesity, thinning hair, and sleep apnea. I don’t deal with any of those symptoms, but there are women out there who do.
I could go on and on for years about the lack of emphasis on women’s healthcare, but I’ll start here by saying that there is NO KNOWN CAUSE for this very common syndrome that has DEBILITATING symptoms. There is no known cause, there is no cure, and there are very few treatments. One of the few treatments includes birth control, which is so stigmatized in society and is being threatened to be taken away from women all over this country every day (another conversation for another day lovelies).
Like I said, everything about it sucks. In my experience I have dealt with irregular periods (5 times a year max, but I usually got 3 in those years when I wasn’t treating it), extremely heavy periods (I’m talking filling up a super tampon in less than 2 hours for 3 days straight), depression, anxiety, acne, weight gain (with most of it on my lower stomach), extreme difficulty losing weight, sugar cravings like no other, high cholesterol, and fatigue. But the worst symptom of all, is the pain associated with each and every period I get now. I have been on the pill for 9 years, and yes I now get 12 periods a year and they last for about 4 days, but there are some days when I cannot get out of bed because of the pain. As a working, full time college student, that is not a fun way to live. And even though I am treating it, my estrogen is still low, my testosterone is still high, and I am still dealing with a good portion of my symptoms every day.
To treat my PCOS, I have been on birth control for the past 9 years, but even that has not been everything I hoped it would be. First of all, it took about 3 years to find a pill that worked for me. Most kinds of birth control pills would just make me vomit every time I took them. But then I discovered TriNessa, the first and only pill to not make sicker. However, even that doesn’t eliminate my symptoms, it simply helps the dysmenorrhea (absence of periods).
Imagine waking up with your lower back burning in pain and pains in your lower abdomen that feel like someone is repeatedly stabbing you. Imagine that for a week or 2 straight and then waking up to the heaviest period of your life. For 10 days. And then imagine wondering every day when it’s going to happen again, and then getting surprised by it 4 months later. And imagine that pain being so unbearable that you can’t get out of bed and go to work or class. Imagine gaining 20, 30, 40, 60 pounds in one year, and working incredibly hard to lose it while seeing little to no result. Imagine growing a beard while the hair on your head is getting thinner every day. Imagine trying to get pregnant for years to finally conceive, and then have a miscarriage.
That is what a day in the life of a woman with PCOS is like. It’s horrible and it’s hardly ever talked about. It goes by undiagnosed and invalidated every day. But that stops today.
If you’re reading this and thinking, wow this sounds just like me, PLEASE go to your doctor and get checked out. I can no longer stand by and continue to let the women I know and love live with something that can be treated. If someone you know ever begins to complain of these symptoms, show them this post, do some research and make sure they get to their doctor. You need blood tests and an ultrasound to confirm a diagnosis and then you can get the treatment you need.
And if you’re reading this as someone who’s already been diagnosed with PCOS and who lives with it, please talk to me and share your story! We can and will work together to make this a more visible condition. We can help more women get treatment and we can create a support system for one another. I will never say it enough that we need to support each other.
I hope you lovelies learned something from this post. I know it was kind of downer, but it is so important and I really hope it helped !
Love and light,