What It’s Like Living With PCOS

Now for another post about how I live with my multiple illnesses. PCOS is my only non-inherited chronic illness since the disorder isn’t a gene. It has an impact on my life, but compared to my other health issues, it isn’t that bad.

How it Started

PCOS isn’t apparent until you have your period. I had very irregular, heavy periods. I just assumed it could’ve been my POTS, hemophilia, or EDS. I wasn’t worried about it also since women in my family have a history of getting hysterectomies as teenagers due to the heavy bleeding. I did gain weight, which concerned me (CURSE YOU, BODY IMAGE ISSUES!!!). Again, I assumed it was my POTS. I went on a strict diet, and I lost the weight.

I eventually ended the diet, it was too hard, and the only thing I got from it was weight loss. I stayed the same weight for a year or two, but I started to gain more weight in about 8th grade. It was confusing since I was relatively active (by POTS standards) and ate pretty healthy. In 8th grade, I had a period that lasted 30 DAYS! Heavy bleeding EVERYDAY. In response to the insanely long periods, I went on birth control. I chose to use the pill, but they only worked for one cycle, and they would stop working, and I would get my period. Worse, with each new birth control pill, I gained 3 lbs. At the beginning of high school, I then started to grow on the side of my face, chin/neck, and upper lip. I had a lot of confidence issues, then due to the new changes.

My mom researched online and looked at PCOS, possibly being the problem. PCOS often accompanies insulin resistance, which explained why my triglycerides were high. I got additional bloodwork done and found I had very high leptin and testosterone levels. In addition to my PCOS, my POTS got so bad that I had to leave school and do homebound/cyber. Too busy with school and my POTS, I removed the facial hair and put it on the back burner.

By 11th grade, I knew I was going to go to Spain. I knew I had to get on a diet to make me have more energy and feel better.

My Diet

We went back to the nutritionist, and I was put on a diet to control my testosterone levels. (I’ll post something about my diet in another post.) My PCOS symptoms haven’t changed with the diet. I’ve only lost 5 lbs, my periods remain irregular, heavy, and I have excess body/facial hair. My testosterone levels have lowered slightly, but not enough to decrease my symptoms. I have an appointment scheduled with my nutritionist soon.

Problems/Obstacles my PCOS has Caused

  • HAIR
    • All my body/facial hair is longer, thinker, darker, and grows faster. I rarely shave my legs, lower stomach, and armpits, so that hair doesn’t bother me. But my facial hair does bother me. I’ve tried multiple hair removal methods, and sugaring has given me the best results. Sugaring is not common near where I live, so I have to drive out of town (like 40 minutes) and pay more to get it done. And with my PCOS, I need to be sugared more often than others since my hair grows fast. It has definitely been worth it for me.
  • Weight
    • It is hard to live in a society where if you are overweight, it is assumed it is your fault. That you are lazy, eating junk food all day. It isn’t true. A lot of the times, our weight is out of our control, and even if it was in your control, it is NOBODY ELSE’S business. In addition to the hair, PCOS has impacted my self-esteem.
  • Heavy, Irregular Periods
    • Periods suck. They suck even worse when they are irregular and heavy. You never know when you’ll get it, so you can never plan stuff in advance based on your period, and when you have it, it is ALOT. During my period, I take Midol, and like many women have to do… I SUCK it up. 😦 PS: Can we get days off for our periods?!
  • Stigma
    • It is very taboo to just talk about a period, but especially taboo if you talk about problems you are having. This stigma prevents women from discussing their periods with others and their doctors. We need to get rid of the shame around a natural thing our body does and start to have open conversations about our bodies.
  • Gender Roles
    • As evident by “girl” toys, girls are raised with the idea that their main goal in life is having their own biological children. My PCOS makes it highly unlikely I will in the future be able to get pregnant (which I don’t want to due to the possibility of my genetic problems being passed on and the difficulty of pregnancy with my disorders), and that worries me that I will find a guy I love, but disappointing him with that I won’t have my own biological children, which is what I’m told is my main job. It is a ridiculous belief, but I can’t help but think the way that society wants me to think.

Basically, PCOS sucks. Thanks for reading about my story and experience with PCOS!

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