Having Polycystic Ovarian Syndrome (PCOS) can be a real nightmare. While not life-threatening, the condition causes all kinds of unwanted side effects: painful ovarian cysts, acne, excess body hair, and more. It's a nagging kind of pain that never goes away. It's just, well, there to remind you you're alive because it hurts like hell. Since my initial diagnosis a few years back is, I've learned that there are some things people say to women with PCOS that really don't help the situation. At all. Not even a little bit, you guys. In fact, those comments, more often than not, just make us feel worse and more helpless than we already did.
Before I was officially diagnosed, I experienced severe pelvic pain. When I went to my doctor for an exam, he discovered a cluster of small ovarian cysts. Much in the way menstrual cramps can leave you on your bathroom floor in the fetal position all day, the pain from growing cysts (or even some that have ruptured) is diabolical. Those who haven't experienced it may not comprehend the amount of pain you're actually in, even passing it off as "not that big of a deal," when it so is.
Luckily, I was able to relieve some of the discomfort by having my right ovary removed and by taking medication. However, as long as my reproductive system is in place, I will always be susceptible to more cysts, all those nasty PCOS side effects, and all the things people feel fine saying to me because of it.
"It Can't Hurt That Bad"
Uh, are you inside my body right now? If you were, you'd never say that. I'm so tired of of others downplaying the pain of PCOS. It actually can hurt "that bad," and there's little-to-nothing I can do about it, except the usual (heating pad, pain meds, sobbing for hours).
Unless you've experienced it for yourself, it's unfair to assume those suffering aren't in an adequate amount of pain. Even if you have experienced it for yourself, your experience isn't the end-all-be-all and doesn't void someone else's. If someone is in pain, the humane thing to do is, you know, believe them.
"Just Get A Hysterectomy"
If only it were that easy, right? It's not like having major surgery to remove an organ isn't going to have physical and hormonal ramifications, right?
Even in having my right ovary removed, I get lesions on my left ovary. If I chose to have my left over removed and/or a full hysterectomy, not only would it throw my hormones farther off than they already are, there will always be a chance the problems will come back to haunt me because there is no guaranteed cure for endometriosis or PCOS.
"How Are You On Your Period Again Already?"
I have this discussion with my partner about every 5-14 days. Part of the fun in having one of these ovarian syndromes is never knowing when you'll get a visit from the menstrual fairy. In my case, it's either very often or years between so I try not to buy a lot of white and I avoid pools like the plague.
"You Probably Won't Be Able To Get Pregnant"
First of all, not everyone wants to have a baby but joke's on you because I got pregnant a few times, despite my diagnoses.
Yes, having PCOS does affect how easily, or in my case — difficult — it can be to become pregnant. PCOS and endometriosis can have similar symptoms and both can cause infertility, so it's important to get an official opinion from your doctor and do your due diligence when diagnosed with either disorder. Regardless, whether I can and/or choose to get pregnant isn't anyone's business.
"Why Do You Have So Many UltraSounds?"
If you're like me and have experienced signs that suggest a trip to your gynecologist is in order, and more than a few times per year, each visit will probably include an ultrasound. The ultrasounds happen frequently because I am in tremendous pain. That pain tells my doctor we should get a better look inside to make sure there aren't new cysts.
The ultrasounds, however scary, will show if there is something treatable (i.e. surgery, different meds, etc), or if it's a continuation of pain I already had and there's nothing new to report. The latter is my nightmare, as it suggests I can only keep doing what I have been. It's always better to be safe than sorry when dealing with reproductive health so, basically, mind your own damn business.
"It's Not Like You're Dying"
Commence the super hard eye roll, right about now.
True, I'm not dying from PCOS right in this moment. And true, there are far worse things I could be forced to endure. But aren't we all dying a little each day? And isn't quality of life important, and worth fighting for? Simply being alive isn't living, my friend.
I'm so tired of hearing this about PCOS because, although not terminal or life-threatening, it's hard to get through daily life with it. It changes the way I sit at my desk, the way I interact with the outside world, and even how much (or how little) I play with my children.
"Lots Of People Have It And They Seem Fine"
I'm really happy for those people who have PCOS and can get through their days without a hitch. It's a hard condition to live with, so if there are women out there seemingly pain and discomfort-free, more power to them. I, however, am not one of those women.
PCOS doesn't have to mean the end of the world and you're not alone if you have PCOS or endometriosis. However, it sure would be a hell of a lot easier to deal with, if others could be a little more compassionate. Think before you speak — especially if you don't know what it's like — and offer encouragement and hope to those who need it.