Polycystic Ovarian Syndrome, otherwise known as PCOS, affects five to ten percent of women in the United States. PCOS has many symptoms, including irregular periods, excessive cramps, infertility, weight gain, and body hair. Not all women with PCOS experience all of these symptoms, however, they experience some combination of the above and others. These symptoms are difficult to live with for a variety of reasons. I mean, who would want to have excessive cramps that force them to call off work every time they get their period or who wants to be told they'll never be able to have children of their own? Not me, but as a woman with PCOS, many of these symptoms are my reality.
PCOS isn't something that just affects your normal girl next door. In fact, many celebrities have been very open about their struggles with PCOS. Pretty Little Liars star Sasha Pieterse-Sheaffer has been very open with her struggle with PCOS, detailing how the weight gained related to the hormone imbalanced caused her to gain seventy pounds. She's radiated body positivity and awareness for PCOS while on Dancing With The Stars and beyond.
Country superstar Kacey Musgraves has also been very open on Twitter & in interviews about having PCOS. She turned to the social media platform to get advice from other women with what to change about her diet and lifestyle. Other celebrities who have PCOS include total badass and celebrity trainer Jillian Michaels, Star Wars actress Daisy Ridley, Victoria Beckham, The Bachelor contestant Simone Ormesher, and others.
Lately, I've been really struggling with excessive body hair, which comes along with having PCOS. I get hair on the side of my face and chin, forcing me to have to go to desperate measures to remove it at LEAST every other day because it grows back so quickly. If I go a few days without removing the hair from my face, it's beyond noticeable and I spend the entire day freaking out thinking someone is going to comment on it.
While body hair is the worst part of living with PCOS to me, I know that every woman has a different story. I decided to talk with some women who have polycystic ovarian syndrome to hear their story and see what made PCOS so hard for them. An outstanding EIGHTY-EIGHT women with polycystic ovarian syndrome responded to my survey, and their responses were very eye-opening. Many of them brought me to tears - PCOS affects women every day in such extreme ways, and yet most people don't even know what it is. If it wasn't for me having it myself, I wouldn't have the slightest clue.
So, what is the worst part of living with PCOS? Here's what nineteen of the women I spoke with had to say.
1. Infertility has removed a bond like no other.
"I hate the idea that I won't be able to have children of my own one day. I'm okay with adopting but I would rather have that close bond of something I made." She isn't alone. 19.3% of those surveyed said the worst part of PCOS for them is the struggle with infertility.
2. My extreme cramps are no joke.
"I get extreme crippling cramps that almost send me to the ER each month. I'm unable to move or breathe through them. I get to the point where I can't sit up by myself and can't do anything without help. I have many of the other symptoms and I can deal with them and get by with them but my cramps knock me out of commission and I hate having to do they "I can't work because of my cramps. I've had people look down on me for 'overreacting' on it." Maybe next time someone calls off work or skips class because they're cramping, we shouldn't be so judgmental.
3. Infertility has crushed a dream of mine.
"It's a lifelong dream to have a family with children of my own, and to be exposed to the probability of not being able to have children of my own scares me."
4. The medical community has no idea how to help us.
"My biggest challenge has been trying to get doctors to firstly take me seriously, and secondly to treat me appropriately. I've had to fight for every blood test and panel." Maybe this is why it's so hard for a woman with PCOS to get a diagnosis - the medical community just doesn't understand.
5. No guy will be a fan of a woman with facial hair.
"I am constantly thinking about if people can see the wiry hair on my face, 24/7. I feel sick when I think about getting a boyfriend and having him touch my face and feel stubble." Girl, SAME. I've had kids come up to me and ask why I have hair on my face - talk about uncomfortable.
6. Infertility is a roller coster.
"I love children and want nothing more than to have one of my own. When I do finally ovulate and we find out we're expecting, it results in a miscarriage due to uterine fibroids. Infertility is an emotional and mental roller coaster, which feels will never end. The heartache, the depression and on extremely difficult days, psychologically, I don't even recognize myself."
7. This bleeding is too much.
"When I have my period, which comes on average every 18-20 days (pretty regular, which is not typical for PCOS), I am completely incapacitated. I bleed through super plus tampons in a matter of minutes, blood regularly runs down my legs, and pools on the bathroom floor. It's embarrassing. It's expensive. In addition to my struggles, my husband also struggles with this. He has to sit by and watch me cry in a pool of blood, every 3 weeks. I know it kills him."
8. Hair loss isn't feminine.
"Hair loss is a major concern for me, as it isn't considered feminine...it's going to be difficult to find a guy who is okay with my advanced hair loss at 26."
9. No matter what I do, the weight won't come off.
"I exercise 4-6 times a week, eat clean and healthy but my weight stays the same. Sometimes I look more toned than other times but I find it hardest to carry so much weight around although you're putting in the hard work with exercising, eating an incredibly restrictive diet (no dairy, no wheat, no sugar, low carb, low gi) cheat snack once every two weeks under 1600 calories per meals and still look the same." This is why it drives me up a wall when someone looks at an overweight person and just assumes they never work out. You don't even know.
10. The weight is something everyone can see.
"I gained weight as soon as I got my first period. I ballooned up 50 pounds between the ages of 11-12 and for a 5'2 girl? That's a BIG change. It ruined my social life in school and my confidence in myself. Now 10 years later I'm still struggling with losing weight and doctors won't take me seriously when I tell them I can't lose it. I've been trying to lose weight since I was 8, yet doctors just tell me I must be lying or not trying. That's the worst part. I can live with the hair, and the heavy bleeding and the pain, but the weight? That affects the way the rest of the world sees me."
11. Yeah, in case you haven't got the hint, this weight is bullshit.
"I literally gain weight regardless of eating a burger vs a salad. It's bullshit." Once again, don't assume because someone is overweight all they stuff their face with is crap.
12. My depression and anxiety has me trapped.
"It's ruined my life. I don't leave the house."
13. Not only is facial hair embarrassing, but it also isn't covered by insurance.
"Facial hair is what keeps me in the bathroom every morning crying because I feel so unattractive and unfeminine. It's painful when it grows back and it's just everywhere. And even when you shave, you can tell where it was and it just grows back. No doctor cares to hear about it and permanent hair removal, unlike other PCOS treatments, is considered "cosmetic" and is outrageously expensive/not covered by insurance." The fact that insurance doesn't cover this is beyond ridiculous to me...
14. Acne doesn't end once you've gotten older.
"I've had problems with acne since going through puberty and now half way through college majority of people have none. It makes me feel insecure about my face."
15. The place where I hold all my weight is awful.
"My weight gain goes to my waist and when I look in the mirror it's like a beer belly or pregnancy belly. I recently went to a baby shower and there was a game to try and get the waist correctly with string. The pregnant woman's waist (~32 weeks) was the exact same as my waist. It makes me incredibly insecure about my looks every single day." I hold all my weight in the same area and let me tell you, it makes me so uncomfortable. Why does my stomach have to look like this?
16. Have you realized that the weight gain is miserable?
"I've actively been trying to lose weight for over 12 years now. It's so frustrating when I see people that don't have to watch what they eat or worry about exercising, while I have to count every calorie and exercise every day of the week just to maintain the small loss I've accomplished. Along with excessive body hair (I have to shave my neck every day so I don't grow a beard) and acne, it's hard to leave the house some days. One of the worst feelings is the thought that people just assume you're lazy because you haven't lost any weight since the last time they've seen you, when in reality you're probably more active and healthier than they are in other ways, it just doesn't show." PREACH SISTER.
17. Adult acne makes me seem unprofessional.
"Adult acne makes you feel as though you're not a professional, you're self-conscious that everyone is looking at your acne and not listening to what you're saying and it discredits you and your opinions."
18. You think an occasional clot is bad? Try living with this.
"Clots, clots, clots! Every time I sneeze or stand up it feels like I'm going to flood my undergarments. It's embarrassing and such a hassle to keep up with."
19. This social stigma sucks.
"It's frustrating how people simply view it as a fertility issue and not as an endocrine issue. They assume that the only thing wrong is your ovaries, which obviously is very wrong. People write it off as "not serious" when there are serious impacts of PCOS on those whole live with it. The general public seems very uneducated on the overall illness." I'm hoping this article helps people begin to understand PCOS some more because I agree completely - it's something that is so misunderstood.
Note: Responses may have been edited for clarity or length. A huge thank you to all who responded to my survey - many responses were very similar, so I hope your thoughts are echoed through this. My hope is that through this article, more awareness can be brought to PCOS, how it affects countless women, and what we can do to increase awareness and decrease the social stigma.