7 Women Talk About The More 'Taboo' Side Of Polycystic Ovarian Syndrome
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7 Women Talk About The More 'Taboo' Side Of Polycystic Ovarian Syndrome

You can find so much information about polycystic ovarian syndrome online, but what about the more personal side of things?

7 Women Talk About The More 'Taboo' Side Of Polycystic Ovarian Syndrome
Bobbie Hall / Facebook

It’s incredibly important to talk about things that are embarrassing. This is exactly why I decided to ask seven women about some of the more taboo aspects of PCOS. None of us are alone, and we should all work to make this a more accepted part of our lives! We all stand together.

"Some days are better than others. Some days I feel like a warrior. Other days I feel so disgusting and nasty that I just want to crawl in a hole. Along with my cysts came weight gain, extra hair, horrible acne, irregular periods, and insulin resistance." — Teresa, 19, diagnosed at 15

"PCOS affects my family relationships because every time I bring it up, my mom just mentions watching calories and my weight. I tell her it's more than that, but she just doesn't care to understand. In regards to the romantic side of things, our sex life has diminished somewhat. I sometimes have down days and want to do nothing but cry, however, I also have cerebral palsy. Therefore, I came into the world fighting. PCOS is just another fight for me. My excess hair doesn't bother me. It's just hair. If I get rid of it, it will just come back. I don't let much affect me because then I won't look for the good in situations. Someone ALWAYS has it worse than you do." — Emily, 32, diagnosed at 24

"I haven’t had a sex drive since starting the shot at a young age. I have sex maybe twice a year and it is very painful. I am very moody which causes tension with my family. People tell me I can be almost bipolar when I’m having cyst pain. I have also struggled with depression and anxiety for the past three years. I have had many suicidal thoughts but never wanted to act on them. I have gained over 130 pounds in five years from this condition. I can’t even look at myself in a mirror because I get emotional. It is very hard because my boyfriend does not understand. I think teaching our partners is highly important with this condition. We need a support system and to surround ourselves with positive people. It has been very tough and the pain can be overwhelming." — Kristi, 24, diagnosed at 18

"The way I regulate my PCOS is through birth control. It slows down the growth of cysts, and slows down the rate at which I get them. It doesn’t stop them from growing and appearing altogether, but at least it’s slowing them down. My gynecologist told me that if I wasn’t on the pill, the cyst I have that’s “roughly the size of a golf ball” would probably be “a little smaller than a billiard ball.” Which would definitely need to be removed. I struggle to lose weight and sometimes get acne flare-ups, and just recently I noticed my hair was thinning. It really takes a toll on my self-image and on my self-esteem. People just assume that because it’s polycystic ovarian syndrome it’s all about your ovaries, in reality it’s all over. It affects you from the top of your head to the bottoms of your feet, something I didn’t know until after doing research." — Cristi, 24, diagnosed at 21

"Don't assume that my weight is because of laziness, and please stop asking when I'm going to have kids. Every time someone asks this I feel like my heart is being torn apart. Adoption and foster care should not have a negative view by society. There is a undertone of disapproval or incapability when you are straight and married with no kids. More women have this than you know, and doctors need to find a better way to diagnose. Being told you are just not working hard enough is defeating. At one point I was working out five hours a day mixing cardio and weight training and eating very "healthy" and I was gaining weight all over the place. A healthy diet is not necessarily a PCOS diet. Being told by a doctor that you are either a liar or not doing enough or you're just fat and lazy makes you feel defeated when you are doing everything you can. There should be a documentary made about this for others to see. Or some research studies. Something to help find real solutions." — Amber, 27, diagnosed at 19

"Besides the constant pain and the constant headaches and mood swings, PCOS affects how you feel and look. PCOS makes you gain weight because it affects your hormones, and when your hormones are messed up, your body "hoards" them, causing you to gain weight. I used to be 120 pounds and I loved life. I used to wear shorts and tank tops and felt good about myself. Here I am, two years after being diagnosed, and I don't wear shorts or tank tops. I almost never wear pants because it's uncomfortable. I haven’t worn a swim suit since high school. I am currently 205 pounds, but you learn to love yourself past all the flaws on the outside. We’re all beautiful! Living with polycystic ovarian syndrome affects you in more ways than just physically. It has affected my mental health so much. It makes your depression worse, it makes you have constant urges to just end it all because of the suffering. It makes you think you're not good enough." — Alexis, 20, diagnosed at 18

"I had a terrible fear of doctors and still do. I finally agreed to go see our family doctor. She explained what was going on to him and he referred me to get an internal vaginal ultrasound at a hospital a week later. Which, yes, scared the crap out of me. I went to go do the ultrasound. Once I walked into the small room, the tech started asking all kinds of questions. Finally she asked if I was currently sexually active. I wasn't and told her that. She got mad and annoyed and told us she had no clue why our doctor sent me there. He'd wasted her time. After waiting and dreading this appointment, it couldn't even be done, and I've just had a tech blow up in my face about it. I was traumatized. I told my parents I refused to go see any doctors ever again. A bit dramatic. My mother eventually found a local OBGYN who was willing to see me and agreed to not touch me in any way. Yes, that was something I made her promise me over the phone. She was very kind and patient with me. Since being diagnosed, I've definitely seen a decrease of sex drive over the years. But nothing too terrible. Supplements like Maca Root and Inositol help. For the most part our sex life has been very average and normal." — Kelsey, 21, diagnosed at 17

PCOS affects me every single day of my life. It’s always on my mind. Because of this syndrome, I have had horrible acne for my entire teen life, with no end in sight. I am also obese, but I am slowly becoming healthier. My body hair grows incredibly fast, which is only appreciated when talking about the hair on top of my head. If I want to stay smooth, I have to shave at least once a day. In other words, I am never completely smooth. On the topic of hair, I grow hair that is unusual for women. I don’t just mean hair in my mustache area, I also mean dark, thick hairs where men have beards. It’s an incredibly patchy beard, but it’s there nonetheless. Not only that, but I also have chest hair. When swimsuit season gets here, I literally have to shave my chest because of all the dark hairs. My PCOS means I don’t look like the typical ideal female all the time, but that’s okay. I’m learning to love myself one day at a time. — Bobbie Annette Hall, 18, diagnosed at 17

Having polycystic ovarian syndrome causes issues in a girl’s life, but we all get through it. You can too.

To read more about PCOS, click here.

*Some names have been changed for privacy purposes.

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