In a brightly lit room with a circle made of folding chairs, a dozen or so women are at the refreshments table. They’re filling their plates with finger foods and grabbing a drink before going to socialize. Each woman has a blue sticker nametag with their name written in marker. Whether these women are using their actual names or not, isn’t the issue.
After chatting for a few minutes, another woman with a clipboard comes out of another room and sits in one chair. The crowd goes silent as each woman sits in a chair, ankles crossed. After everyone has settled, the woman with the clipboard looks around with a smile.
“Hello, ladies. I’m Amanda. Welcome to the PCOSA.”
Poly Cystic Ovarian Syndrome Anonymous.
I am one of these women. I begin.
“Hi, I’m Ellie and I suffer from PCOS.”
Whether this group exists or not, I don’t know. I’ve never looked into it. But if PCOS support groups DID exist, I imagine them to either be like AA meetings or a little more personal.
My journey with PCOS began when I was 13. I’d gone 9 months without a cycle. I was terrified, thinking I was pregnant. However, one thing stood in the way of this: I was still a virgin. I was in 6th grade. Boys were SO off-limits. At least the ones in MY school. I didn’t socialize outside of school at that age because there wasn’t anything to DO. All the friends I had at church lived in different areas and had their own friends.
In high school, I remember my mom plucking something out of my chin. It was hair. At some point, I noticed hair growing on my abdomen. I shaved it, but it was back with a vengeance in 24 hours. So WTF was going on?
I wasn’t bothered by it until my mid-twenties. I was with my second fiance’ and hadn’t had my cycle. I thought I was pregnant. Went to the OBGYN and was asked the classic questions: Do you have hair that grows on your chin? Yes. That was the only question I remember. That was when I was diagnosed with PCOS.
PCOS is a hormonal disorder where cysts grow on the ovaries. This can cause problems for young teens in terms of discovering their cycle and planning appropriately. Nowadays, you have phone apps that predict this. Back in 1995, you had notebook and pencil. I used Microsoft Excel to make a tracker. From 1995 to about 2000 or so, I tracked ALL my cycles. Looking back, it’s blatantly obvious something was up. I’d go several months without one, several days WITH one. My longest was a month and a half, while my shortest was less than 24 hours. I never knew when it would start or how heavy/light it would be, so I stocked up. I had heavy, light, medium pads and tampons.
For women of childbearing age, this can potentially cause serious problems. Especially if you want children. Mainly because this causes infertility. Now, I’m not saying that women with PCOS CAN’T have kids. All I’m saying is it may prove to be more of a challenge than for women WITHOUT. My knowledge regarding fertility and pregnancy is limited because I am still single and have no intentions with having children. I made this decision in my early teens. Mental issues began to rise and I realized I was a late bloomer. I never dated. The boys I was around weren’t interested in me. That was fine. I wasn’t interested in them, either.
I was in my early twenties when the hair began. It was black and looked goatee-ish. It was long enough that I could pluck it with ease. I tried shaving it, but I had embarrassing stubble. I never let anyone get too close. I then discovered plucking. It took forever, but lasted longer than shaving.
Then I had my first ovarian cyst rupture. Wasn’t that long ago. I was laying in bed, and felt this EXCRUCIATING pain in my right inner thigh. I lifted my leg back and it hurt REAL bad. I thought it was just cramps. But then I got up and realized I couldn’t stand. I went back to bed and realized no matter what I did, the pain wouldn’t stop. I decided to get a heating pad. It was just by the grace of fate that my youngest sister had JUST come back from West Virginia earlier that day. She and her then-boyfriend were leaving. I asked her to get the heating pad. Mom heard the commotion and came out. She thought I had a ruptured appendix. We had to go to the ER. My sister had to help with my shoes because I COULD NOT MOVE. We didn’t get home until 3am. I called into work and spent the rest of the day in bed with a painkiller that made me more nauseas than anything else. I went back to work the following Monday and was gone within three hours. This was when I realized how stupid my management was. I was CLEARLY in pain as I could NOT stand. My manager told me ‘the doctors note said you could come back.’ I CLEARLY CAN’T STAND! Apparently word from authority meant more to them than what they actually SAW. What they SAW was the fact I was in pain and unable to stand. What they BELIEVED was what my doctor had said.
To make a long story short, I went to the ER three times and was out of work for a month. It was two and a half months before I was back to normal. That was when I went back on the pill. I’d taken some samples a few years previous, but they messed me up. I wasn’t really worried. Cysts never crossed my mind.
Fast-forward about five years later to present day. I’ve had three more cystic ruptures and the last one slipped through the cracks. My theory is that the cyst was already growing. Then I went back on the pill for a few months, then missed a few days due to bad timing. Once I got back on, that was when the rupture occurred. So it had all that time to grow when I WASN’T on the pill, then the few days of bad timing was just the tip of the iceberg. I knew what to expect when I suffered a small rupture around Mother’s Day of this year, just to have a really BAD one a week later. I had an idea of what had happened when I’d had my cycle so bad I had to toss my pajama bottoms.
As for the side effects, I’ve never had trouble with the acne. It’s been hair growth. I found a pill that I love because it didn’t slow the facial hair, it stopped. Well, as much as can be expected. But I also discovered taking a hair, skin and nail multivitamin helps with this. The HSN vitamin fills in what the PCOS hormones can’t. So not only do you lose unwanted hair, your natural hair grows faster, as do your nails. Win-win, I say.
So to get rid of the facial hair, I pluck as needed. The heavy stuff was still there. I’d expected it to fall out. But it didn’t. Took me an hour and a half to get EVERY HAIR OUT OF MY CHIN. That was a few months ago. To this day, sparse hairs grow back and they’re mostly white. The shadow I had on my chin has healed and there’s zero indication that there was ever a problem.
As for the weight, I’ve tried the ‘normal’ stuff. Eat correct, exercise. Nothing. I’ve always known with my issues, I’m not in the ‘normal’ realm of ANYTHING. So why should I think I can DIET normally? Nope.
At first it was denial. You want to be like everyone else, even though your body and mind are telling you NO. The more you ignore, the worse it gets. So I believe I have found my OWN solution regarding weight loss. Remember, my goals aren’t the same as everyone else’s and everyone’s body responds to different situations.
I meant to have this posted yesterday, but due to some scheduling hiccups, it obviously didn’t happen. For the next few weeks, my posts could be either on Fridays or Saturdays.
-Have a great weekend!