16 Things People With PCOS Want You To Know

"Being diagnosed remains one of the biggest mysteries and reliefs in my life."

Polycystic ovary syndrome, or PCOS, is a common condition that affects how a woman's ovaries work.

It affects 1 in 5 women in the UK, and symptoms include irregular or no periods, heavy periods, excess body and facial hair, acne, pelvic pain, and weight gain. It has no cure.

We asked people in the Buzzfeed Community to tell us what it's like to have PCOS. Here's what they said.

1. There is an annoying lack of awareness about the condition.

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“The thing that was most distressing was how many years and doctors it took to figure out I had PCOS. Having an explanation was relieving, but I spent so much time being resentful and angry at my many doctors who couldn't figure it out.” – sharonb30

“I've had problems with my period since I got it at 11. Whenever I would get one, I would be so horribly sick that I couldn't go to school and my teachers and even my dad kept saying I was faking it. It wasn't until I was diagnosed at 16 that we learned I wasn't faking it. I just had PCOS.” – mkkaykay

2. The symptoms are super hard to deal with.

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"Imagine the heaviest of periods, soaking through 6-8 pads (and tampons at the same damn time) in a 12-hour time block. Now imagine that for six months straight, nonstop. With all that comes with a period, including cramps, bloating, fatigue, etc. Now tack on thinning head hair, all the weight gain, emotions all over the spectrum, complete loss of any sexual drive/appetite, and cystic acne. These are just the biggest of the symptoms. There are more." – copygirl9980

“Periods with PCOS are horrible (less horrible now that I'm medicated), especially in school. I can't count the amount of times teachers told me 'it can't be that bad' or 'stop acting out for attention' while I was writhing in pain, on the edge of tears. It was incredibly frustrating that no one believed me when I was in so much pain.” – rebeccajeannee

3. And the emotional toll is just as bad.

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“I struggle with my weight. I struggle with depression. I have crippling migraines. My periods are horribly painful and horribly irregular. But this is almost nothing compared to the agony of spending years thinking I was a defected broken human.” – sharonb30

“The worst thing is feeling like you're less than because of PCOS. I don't feel as womanly as I want to sometimes because my body doesn't allow me to. I am beyond sick of feeling self-conscious all the time, every day. To waste so much of one's energy worrying about how you look is exhausting, but I don't know how to stop.” – MrsH810

4. It literally affects every aspect of life.

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"It makes my moods suck because I feel like crap between the weight and the pain. Sex is not always amazing because there are times that it hurts so bad I have to stop my husband because I am almost in tears. He ends up thinking he's done something wrong.” – a4b6d9f613

"I'm 22 years old, incredibly healthy, and have high blood sugar and testosterone levels from PCOS. I take medication with every meal to regulate my blood sugar. I don't eat any artificial or processed food, no carbs or sugar that is not natural such as pasta, bread, anything like that, and very limited natural sugars such as fruit, sweet potatoes, etc. No matter how healthy I eat and how often I exercise, I am not able to lose weight. People don't realise how difficult it is to manage your life with PCOS. It causes an imbalance in your hormones which throws off your whole body. It's more frustrating than people think." – jaimeh4cefbfa0e

5. People can be super ignorant about it.

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“Honestly, it's really hard when people think you're gross and dirty because you have acne and facial hair, but it was never something I could control. Even with birth control and facewash it was really hard. But now I have it all under control, with occasional worries about my weight or acne but it's all slowly working itself out. PCOS isn't that bad once you learn how to manage it. It will all be okay in the end.” – mkkaykay

“I'm 15 and I was just diagnosed with PCOS. I currently have not had my period in over 50 days. It used to be regular but then it became super irregular. I just want people to stop making assumptions about my weight. I'm pretty active and no matter how healthily I eat in conjunction with exercise I just can't seem to lose weight. This will affect my life forever, with irregular periods, tendency for obesity and all the risks associated with that, and tragic fertility rates." – divyaraina777

“A lot of the issues I have faced with the disease come not only from the general public's lack of understanding, but medical professionals' lack of compassion and care. The gynecologist who diagnosed me, subjected me to a battery of invasive tests (all very upsetting for a kid who hadn't even reached 10, as you might imagine), and explained to me my condition, proceeded to then look at me, laugh, and tell me, "Really, your problem is, and let's face it...you're FAT." – Hannah Nelson, Facebook

6. And sometimes they don't get it even after you explain it to them.

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“One of the most annoying things about having PCOS is when you explain what it is, people always say, 'Well, if you eat right and exercise, it'll fix it, right?' It's frustrating. And I know it's a hard thing to understand if you've never been through it, but come on! I'm not lazy. I'm in a catch-22. My symptoms can't improve until I lose weight, but I can't lose weight until my symptoms go away.” – saucy828

7. Fertility is a tricky topic to discuss.

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"Being told how severe my PCOS is by my doctor, and how I will never be able to have children, was something I found really hard to hear at the tender age of 21. It hurts every time someone tells me, 'You're getting older now, you should start having children.' Trying to explain to them why I can't have children and seeing the pity in their eyes is even worse." – kotslee

"Ever since I was young, I only wanted to do one thing with my life. I wanted to be a stay-at-home mum. I was diagnosed with PCOS after extensive testing. I went 18 months without a period. Learning I could never have children left me broken. Living with facial hair, excess weight you can't get rid of, and acne isn't as bad as never having children. I still go through periods where it leaves me so depressed I can't leave the house. However, I have come to realise that I could always adopt children who need a home. My family adopted my sister, and there is so much love there. It won't be the same, but it is something." – jmorrison9211

8. Though not everyone with PCOS wants babies anyway.

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"Not all of us care about having children. I don't. What I would like is to not suffer from near constant pelvic pain. I'd like to have more contraceptive options that don't cause me to gain more weight, break out, and lose more hair. I'd like to be able to go to school/work without having to worry about painful cramps and heavy bleeding during my period. I'd like my pain to be taken seriously by more doctors." – Sam Prusski, Facebook

"Not everyone with PCOS is able to have children, and not everyone actually wants them. I see so many blogs and videos about how to get pregnant with PCOS but never anything about getting better without that aspect. Love all you cysters." – ashkoe

9. People get diagnoses at different times.

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"My mother and grandmother both had PCOS; my mother had a total hysterectomy before she turned 35, and so did my grandmother just before she turned 21. Unlike most women who were diagnosed later in life, I was diagnosed at 8 years old." – Hannah Nelson, Facebook

10. But there doesn't seem to be all that much information about it at hand.

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"Being diagnosed remains one of the biggest reliefs and mysteries in my life. Knowing that my super-irregular periods, anxiety, and other problems had a root cause has helped me so much in pursuing a healthier lifestyle and not blaming myself for these issues. However, the lack of attention/research this condition gets, despite it being so common, irks me." – paiges95

11. Birth control is prescribed to help with symptoms, but not everyone understands that.

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"I was prescribed birth control, which has been working really well the past year, regulating my period and decreasing some of the symptoms of elevated testosterone (acne, darker body hair, etc). But there's just a huge stigma about having birth control at a young age. When I tell someone I'm on it, they're like, 'Are you having sex this young??' Like, uh, sorry, no, I need this for my uterus to function properly." – Caitlyn

12. People try lots of different things to deal with their PCOS.

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"I was diagnosed at 15 with PCOS and tried everything: diets including low-calorie and low carb, exercise (I was running four miles per day), birth control pills, prescription diet pills, and Metformin. Nothing worked. I just kept gaining weight and growing facial hair everywhere. At my heaviest I was 486 pounds! At 27, I had a gastric bypass surgery which sent this bad boy into remission. Four days later, I had my first natural cycle in 13 years! I've lost 263 pounds now and I have no more PCOS. I'm even pregnant with my first child at 32. Once you can get the sugars regulated, you're in a much better place." – shannonc4f8cc995d

"As a teen, I was made fun of when people found out I had PCOS. That was, of course, incredibly painful. I tried electrolysis, which was like torture, and decided it was too painful and expensive to be a real option. I'm 37 and am starting to look into IVF to try and have a baby. If not, adoption is a real option for me." – Lindsay Bennett, Facebook

13. You can go from the heaviest period of all time to none at all.

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"All throughout my teenage years, I suffered highly irregular periods. They were so irregular that one time, I had a period that literally lasted all summer. It wasn't like light spotting either. It was a normal, definitely there flow. Then I went six months without one. This happens because my hormone levels don't drop, which causes a period. So once I get a period, it isn't a legitimate period. It's just that the uterine lining has gotten so heavy that it falls off." – emilys44b743fcd

14. Bursting ovarian cysts are a thing.

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“I am constant pain most days. I have blacked out from the pain of a cyst bursting but I get treated like I don't know my own body.” – stephanied42

"The pain of ovarian cysts has sent me to the hospital thinking I have appendicitis three times." – emilys405016583

"When a cyst bursts it's the worst feeling in the world! It feels like a hot, rusty knife being stabbed into you!" – brittanym414b51138

15. Too many totally unfair assumptions are made about people who have it.

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"No matter how often you work out and eat well, you still won't have 'the perfect body', and people will always make assumptions that you just haven't tried a different diet or exercise regime or are just lazy." – kaylamelissal

"Because people don't know my health history, they're free to make all kinds of assumptions about my health based on what I look like. I still eat well and I work out pretty regularly, but now it's to feel well rather than to look well." – marjorielamba

"I was constantly bullied by friends and family about my weight. A close family member would make fun of me and bribe me to lose weight as a child. When I hit puberty and the weight came on immediately, I resorted to bad eating behaviors. It wasn't until I was 18 that we realised I had PCOS. By that point, I had been mocked, pushed onto scales, forced to exercise extreme amounts as a child, and was slowly being tortured by everyone's words." – estherk40360f052

16. Having PCOS doesn't make you any less of a woman.

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"There have been times when I didn't think my self-esteem could get any lower. Sometimes the negative thoughts seem like a vacuum but, I try to remind myself everyday that I'm worthwhile and I'm not any less of a woman because of this disease. I have control over my thoughts and my body. This disease will not win!" – courtneyw444008581

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