What It’s Really Like To Have PCOS, Because It Affects Different Women In Different Ways

September is National PCOS Awareness Month. What is PCOS, you say? In other words, polycystic ovary syndrome. I know what you’re thinking: “I don’t have PCOS.” But how do you know? And what’s it like to have PCOS?

Almost 7 million women in the United States have PCOS — and less than half realize they do. “PCOS is an endocrine disorder affecting women of reproductive age; in the U.S., it is estimated that 1:10-1:20 women may be impacted by the disease,” Dr. Kecia Gaither, MD, a double board-certified physician in OB/GYN and Maternal Fetal Medicine, tells Bustle. “The exact cause of PCOS is unknown, however, a genetic basis may be involved, as most women affected have close degree family members — like a sister, mother or aunt — with the same disease.”

Scary, right? Though it doesn’t have to be. Usually, doctors look for at least two of the following symptoms before they diagnose someone with PCOS, according to the Mayo Clinic: irregular periods (i.e., everything from if cycles are more than 35 days apart to getting less than eight periods a year), excess androgen (i.e., facial and body hair in atypical places, acne, and male-pattern baldness), and polycystic ovaries (i.e., when ovaries are enlarged and contain small fluid-like sacs around the eggs). PCOS can also cause weight gain, infertility, and an increased risk of diabetes and heart disease. In addition, someone with it may have elevated glucose and/or blood pressure and weight gain around the middle, says Dr. Nieca Goldberg, Medical Director of the Joan H. Tisch Center for Women’s Health at the New York University Langone Medical Center and author of Dr. Nieca Goldberg’s Complete Guide to Women’s Health , in an email to Bustle.

If you suspect you have PCOS, an evaluation by a gynecologist and endocrinologist should be done, she says. “It can be treated with metformin, a medication that is used to lower blood sugar and may also help with fertility,” Dr. Goldberg says.

As you will see below, PCOS affects different women in different ways. Some find out they have it through genetics, after an immediate family member is diagnosed, while others have typical symptoms and others don’t. Here’s what it’s like to have PCOS, according to 11 Bustle readers.

It Could Be Hereditary

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1. Paige, 34

My sister miscarried her first baby and doctors realized she had PCOS, so for her other pregnancies, she had to be on metformin. I mentioned this to my doctor and I had most of the symptoms — didn’t have a period often, a little weight gain, and also was pretty unemotional (fortunately, I skipped the one of excess facial hair). My doctor did a test and I had it.

2. Clair, 24

I found out I had PCOS during a scare where we found a small lump in my ovaries and I got a laparoscopy. My mother has endometriosis, and since that can commonly be genetic, I’ve been extra careful with my checkups. I had been having pulsing pain in my uterus, and was very relieved that it was only a benign cyst and easy to remove. After that surgery to remove it, I had officially been diagnosed with moderate to severe endometriosis and moderate PCOS. Many women with endometriosis are likely to also have PCOS.

It makes my period more painful, but that can be tempered with birth control. That can, of course, mess with my hormones and make me unable to enjoy my social or sexual life at times. The one concern is that it will be an issue when I start having children, so I’m trying to be extra diligent about preventative care to stave off the chance of infertility.

I recommend everyone get examined by a gynecologist every year and be very forthcoming with pain you experience, especially if it’s isolated to one side and extends beyond your period. You’d go to the doctor to treat any other part of your body, so why not your ovaries?

3. Melissa, 34

My sister was diagnosed and her doctor said it could be genetic, so I got checked out — otherwise, I might have gone a while not looking into anything! Overall, it’s annoying — so many things are linked to it, like metabolism, blood sugar issues, depression. I’m least concerned about the kids part — not sure I want any, but so much of the research focuses on creating fertility in women and not the actual things that would make a woman’s life easier and healthier. Creating a healthy plan for management is, I think, more important, and can also solve the fertility thing if that’s what you want out of the situation. Women should get checked out because we are more than just incubators.

Ignoring something because you don’t want kids anyway or overly focusing on fertility and not your whole being can let the side effects of this fall through the cracks. I had a doctor that assured me I could still have kids, but failed to mention why it is important to have a period in the meantime. I ended up with early hyperplasia, which can be pre-cancerous. Knowing the risks and what to watch out for is important, and a plan to move forward is necessary.

Common Symptoms To Watch Out For:

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1. Cassie, 28

I first figured something was wrong when I was 14, when I first had my period. Yet I didn’t have another until 16. I then only had three and, when I was 17, I finally went to the gynecologist and they ran tests and determined I had PCOS. I also had weight gain in only my tummy area, ~horrible~ mood swings, chin hair, and my hair thinned out badly.

They prescribed medications — Provera and metformin, which is a type 2 diabetic drug. (How is that supposed to help an infertility disorder?!) Provera made my chest horribly sore and sometimes my breasts would leak, and it also increased my PCOS chin hair! So at 26, I decided to go the holistic way. I stopped those meds and started incorporating my own natural female balance from the health food store, like plant-based female hormones which regulated me on my own.

Every day is a struggle and it strains every relationship a PCOS woman tries to have, for the sheer fact of the horrible mood swings. You can get discoloration and bumps on your chest, armpits, or back of the neck. I got them on the back of my neck. They come and go, itch, and look unflattering. I got the Teal Ribbon, the color for PCOS, on the back of my neck to disguise them.

2. Jessica, 24

I have PCOS. I knew I had it around age 13 because I had an irregular period, facial hair, and I was gaining weight, even though I was on two separate sports teams. It’s rough living with it — I’ve been through several methods of hair removal, my weight continually fluctuates (lost 40 lbs, gained 20, lost 10, gained 15, etc.), went on metformin for a while, birth control, and tried a few different diets to try to take control of my symptoms. It’s also really taken a hit on my self-esteem. "Can the person I am talking to see that I have facial hair growing in?. ... Will I be able to have kids when the time is ready?"

Also, I have made some major changes in my diet recently (no gluten, soy, dairy, sugar), which makes it hard when going out with friends. Plus, having PCOS makes it easier for you to get type 2 diabetes. You need to monitor your health to make sure that doesn’t happen. Also, there are so many ways you can combat PCOS in your daily life (diet, exercise, medicine) to lessen the symptoms and it really does make a real difference.

3. Lindsey, 27

I blog/write/speak about eating disorders and recovery, and recently did a podcast interview with Recovery Warriors over PCOS and eating disorders — and how the two have affected me. When I was first diagnosed with PCOS, all I could focus on were the cautionary "weight gain" side effects. Already in the midst of an eating disorder, it absolutely propelled me to change my diet (I went vegan) and restrict more. PCOS usually involves insulin resistance, which means that the process of getting the sugar out of the blood and into the cells is defective — the cells are "resistant" to insulin. High intakes of carbohydrates, I was told, will quickly turn to sugar and cause elevated levels of insulin, causing fat storage, etc. In turn, I panicked. I ended up going to rehab in 2013 for my eating disorder, but having PCOS has definitely hurt my recovery at times. I live with looming anxiety that one day my body will just stop metabolizing as well (I’m not overweight) and I’ll have to go on a restricted diet.

Another way it has affected my life is in relationships. It never exactly gets easy telling your partner that you're "not sure" whether or not you can have a child. Because I’m not at the point where I’m wanting to have a baby just yet, I live in a lot of ambiguity in terms of childbirth. No one can tell me exactly whether or not I will be able to get pregnant — so I often live in this vague place where I consider both adoption or IVF or not having a child at all. My partners (present and past) have all been supportive, but there are times when I’m not in a great mood or feeling sorry for myself, and PCOS does make me feel like "less of a woman." With testosterone levels as high as mine, I do feel like I sometimes emote a masculine energy — and that has played a role in my sexuality, as well.

4. Aimee, 24

Ever since puberty, I had an issue with hair growth. I grew facial hair on my chin, and I knew it was in an abnormal way. It bothered me when I was growing up since, of course, it’s embarrassing. I also had irregular periods and issues with my skin. These were just things I lived with and I never sought out treatment. Recently, I started seeking answers and solutions after a scary night in the ER from an ovarian cyst rupture. Now I am working with doctors so I don't have to ever deal with that again. PCOS has also affected my sex life a bit. My cyst ruptured when my boyfriend and I were having sex, which I have read is extremely common.

I think having PCOS has definitely influenced me to want to settle down sooner. When I was younger, I thought I'd have kids at a later age, like 35. Now I’d like to start trying to have kids at 29 or 30, because I fear I won’t be able to if I’m older. While there’s no cure for PCOS, there are ways doctors can help with symptoms — and the sooner you know, the sooner they can treat you.

5. Kelley, 26

I was first diagnosed with the syndrome in January of 2010 at 19 years old during my sophomore year of college. During the summer before, I started putting on weight even while going to the gym about 4-5 times a week and maintaining a healthy diet. I knew something was wrong because I should not have been putting on that much weight. I was also battling bulimia at the time, trying desperately to control the weight gain. My mom, however, had a gut feeling something was going on. When I came back home for Thanksgiving 2009, the scale showed I had gained over 40 pounds since the summer and I was heartbroken.

The doctor did not have any idea what was going on, which made me so angry. He suggested I go see an endocrinologist. I started doing research on my own and came across polycystic ovarian syndrome. I seemed to have a lot of the symptoms associated with the disorder — weight gain, acne, depression, anxiety, and excess hair on the body where women normally do not see hair (my chin and stomach). When I finally went to the endocrinologist in January, it was confirmed I was suffering from this disorder.

I still constantly struggle with my weight that I gained with this syndrome, which to me is the most frustrating part about this disease. ... I want people to realize they cannot judge someone by the way that they look. Most people do not know the struggle that some people face on a daily basis trying to feel somewhat normal in this world.

Unexpected Factors To Watch Out For

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1. Angela, 40, MS, RD, LDN, PCOS Nutrition Center

I am a registered dietitian nutritionist who specializes in PCOS. It took me four doctors to get a diagnosis. I didn’t have the classic symptoms of PCOS — my periods were always regular, I never had hair loss or excessive hair growth. What I did have was low blood sugar, and I started gaining weight out of the blue. This is while eating a healthy diet and doing a lot of exercise. In three months, I gained 35 pounds, with the majority being in my mid-section. That’s how I knew something wasn’t right. After I finally saw the right doctor and got diagnosed, I made it my mission to educate other health professionals about PCOS. I authored PCOS: The Dietitian’s Guide , and speak regularly to dietitians and women with PCOS.

2. Kristin, 29

I wasn’t diagnosed until about two years ago when I was 27 through a bit of a fluke — my regular doctor recently retired and a new addition to the practice ordered the tests on a hunch. When the doctor first told me what she was testing me for I was a bit confused. I had never heard of it before that moment. The woman administering my ultrasound didn’t believe it at first when I walked in the door. Usually, patients suffer from weight gain, hair growth, etc., and I’m a bit of a bean poll. Still, the tests came back overwhelmingly positive. I’ve learned to help control it with exercise and a healthy diet. I researched a PCOS-friendly diet online and generally try to stick to it.

3. Merica, 25

The first time I found out I had it, I was 17 years old. I was having sex with my boyfriend (same boyfriend I have now), and all of a sudden it felt like he poked something. Next thing I knew, I was in excruciating pain in my ovary. I went to the ER and, after testing, they told me I had PCOS and there’s nothing that can be done. The hospital gave me a prescription for painkillers I never took and let me know I should stay on birth control. Eight years later, I now know I have that pain because I have all types of hormonal issues. When I’m about to ovulate, I become very cystic. Sometimes intercourse can be painful, and other times it’s fine. Diet also effects [sic] it a lot — dairy and sugar can set them off. I spend extra money to shop for organic, free-range meats to avoid hormones in food. (Dairy and meat can have a huge negative hormonal effect if the quality is not good.)

There’s plenty of support available for people with PCOS, both online and in person. “After I was diagnosed and experienced the frustration of trying to find credible information and a supportive environment of women who understood what I was going through, I started SoulCysters.net,” Kat Carney, Founder of SoulCysters.net, tells Bustle.

“To date, there are over 100,000 members on the free site,” Carney says. “The experience of having PCOS, and founding SoulCysters, inspired me to go into consumer health journalism — three years after my diagnosis, I became the medical anchor for CNN-HLN. While I was initially on medication for my PCOS, I have been able to completely manage my symptoms with lifestyle changes. I currently work with a nutritionist and work out regularly. My eating, rest, and physical activity are critical to staying symptom-free.”

Images: Fotolia; Giphy, Cassie McKay