As a teen, and for many years, I endured unexplainable menstrual and pelvic pain. It wasn't until I went to a gynecologist was I officially diagnosed with a tilted uterus and Polycystic Ovarian Syndrome (PCOS). While it certainly explained some of the pain and discomfort, there was a lot to learn about the disorder I'd have to learn to live with indefinitely. Understanding the basis of the disorder, and why it confuses those who haven't been through it, means there are more than a few things moms with PCOS won't tell you, but I will.
The height of my PCOS pain happened after I had my youngest in 2011. Because PCOS is a hormone disorder that can affect up to 10 percent of women, my periods had become increasingly more painful — sometimes leaving me bed-ridden — so I made another appointment with my doctor. By this point, I'd endured miscarriages, traumatic and high-risk pregnancies, and infertility woes, so this particular doctor and I had seen enough of each other. It was that appointment that led to the removal of my right ovary, which had become a haven for painful cysts.
I still have my left ovary, for now, though PCOS still reigns whenever and however it wants, often wreaking havoc on that remaining ovary. At times, I feel helpless and like I'm a prisoner in my own body. But the worst part of the disorder isn't even the pain or other annoying symptoms that come along with it, but the way others perceive PCOS and how they think you should feel and act when it festers. With that, here are some things other PCOS sufferers might not say, but I'm going to. Maybe, just maybe, you'll be a little more compassionate the next time you encounter someone dealing with PCOS.
It's Painful With Or Without Cysts
I can't fully explain what it's like to live with these growths on an ovary, or how excruciating something as simple as walking can be, but even if I'm enduring a bout without cysts, the periods are still cramp-heavy with little break for relief. I've had people tell me to "take some medicine," or suggest "it can't be that bad," but oh, my dear ones, yes. Yes it can be. I've been there.
Moms with PCOS might not want to tell you how much it hurts because they think you won't understand or, worse, you'll be condescending and assume their pain isn't "real" pain. I can assure you, unless you've been through PCOS and know for yourself, the pain is legit but we sure wish it wasn't.
Missing And Infrequent Periods Frustrates Us
I get it. People don't like talking about periods, but it's a natural part of life. When you have PCOS, it's hard to pinpoint those bad boys. Like many, I was put on birth control to help regulate the cycles and cramping and, even then, they came and went without much notice. It wasn't uncommon to miss a period for months, or likewise, to have one for months. There's actual chaos happening in the reproductive system when you have PCOS, so please don't assume what works for one works for all.
We Worry About Infertility
Not that everyone wants to bear children but, if you do, PCOS makes it that much harder. I struggled with infertility after the birth of my daughter, experiencing multiple miscarriages before finally getting pregnant with my son. For that multi-year period, I feared I'd not be able to experience pregnancy again. I remember well-meaning friends and family suggesting fertility drugs (which I'd already spoken to my doctor about), but they're so expensive, don't come with a guarantee, and definitely come with a whole other list of side effects.
Even now, as I have no plan of having another baby, there's a little voice in the back of my mind that reminds me if I wanted to have one, I'd have to worry about fertility all over again. It's a feeling that'll never disappear.
Surgery Isn't That Simple
While I had my right ovary out a few years back, it was only after trying every other suggestion first. Although it was a relatively simple in-and-out procedure, having one ovary out still meant I'd have PCOS (especially in the remaining ovary), still have all the other symptoms, and still have to endure painful cramping. However, because the right had been my bigger source of pain, it was the solution my doctor came up with.
Now that I only have one ovary, it's not so simple to just remove it when cysts pop up. That surgery would require more work and removal as I'd have no ovaries left and childbirth would certainly be out of the question. With that said, we're waiting until I'm a little older to do something so drastic (so long as I can withstand the PCOS as is).
There Are Other Annoying Factors Besides Pain
We've already addressed the pain aspect but what else could possibly come with such a fun disorder? How about mood swings. Acne. Unwanted hair growth. Weight gain. Back pain. Literally everything about having a period multiple times over, not knowing how long the symptoms will last this time around. So please, be easy.
We're Afraid Of Judgement
I've had many instances where I'm doubled over in pain or trying with everything in me to get through something, only to be unfairly judged. It's not "being dramatic" when the pain is real so, again, unless you know firsthand what it's like, be gentle to those around you. Even then, your experience is yours, and yours alone. Don't assume any two women with PCOS are alike is symptoms or pain management.
There Is No Real Cure
A lot of people don't realize, having PCOS is an indefinite disorder. Though not deadly, there's no cure which means those of us suffering will continue to do so. We can do the yoga and eat the right foods, have cysts removed and have an ovary removed, but, even then, the PCOS remains.
If you've noticed some red flags and think you might have undiagnosed PCOS, speak with your doctor. For the rest of you, a little compassion and empathy goes a long way.