When diagnosed with an illness, even if you have some of the symptoms, doctors may be unsure of their cause. Such is the case when it comes to polycystic ovary syndrome (PCOS), too, an endocrine disorder that affects women of reproductive age. Although some people are given hard facts about the illness, others are not, and then myths about PCOS are perpetuated. For instance, in a recent episode of This Is Us, Kate Pearson (Chrissy Metz) was diagnosed with PCOS, and it’s implied that it’s due to her weight, which is something many women with PCOS are told — but that correlation has never been proven. So then, the false information is perpetuated.
According to Penn Medicine, the correlation between weight and PCOS is about the body’s inability to use insulin properly, and that can lead to weight gain. But PCOS affects all body types — all shapes and sizes.
Amy Medling, founder of PCOSDiva.com and author of Healing PCOS: A 21-Day Plan for Reclaiming Your Health and Life with Polycystic Ovary Syndrome, tells Bustle that misinformation surrounding PCOS is common, whether it’s doctors telling women they need to lose weight or that they’ll never be able to have children. “As a PCOS health coach, I have heard stories from thousands of women,” she says. “The one ridiculous thing that so many women are told by their doctors is that a hysterectomy and removing a woman’s polycystic ovaries will cure PCOS — this is not true.” She says that PCOS is an endocrine disorder, and the development of multiple tiny cysts on the ovaries — giving the condition its name — is a result of hormonal dysfunction, not the cause.
There are three main symptoms of PCOS to watch for, though someone may have none or just one of them: irregular periods, the absence of periods, or prolonged periods; more male hormones (androgen), which can cause excess facial and body hair, acne, and thinner scalp hair or male-pattern baldness; and/or multiple ovarian cysts. Age-wise, PCOS can begin at the age of 11 or 12, right after someone's first period, though it is particularly common among those in their 20s or 30s. It is also one of the main causes of infertility, affecting six to 12 percent — up to five million — U.S. women of reproductive age, according to the Centers for Disease Control and Prevention (CDC).
Medling says that getting a firm PCOS diagnosis can be a long journey. “It is so important to listen to your body and advocate for yourself — I like to say: ‘Be a diva at the doctor,’” she says. Medling says to do this by being honest with your doctors, telling them all of your symptoms, and trying not to be embarrassed. “Also, don’t write off symptoms to genetics, saying something like, ‘My aunts all have thinning hair; it must be genetic.’ Your aunts may all have PCOS!”
She adds that doctors are not always well-educated about PCOS and may try to treat each symptom separately instead of looking for the root cause, so it is important to get to the heart of your symptoms and persist in the care you deserve. “Be assertive when asking for lab tests, too,” Medling says. “The more information you and your doctor can collect, the quicker you will get to the root of your symptoms and develop an effective plan.” She says this is critical since PCOS can lead to type 2 diabetes, cardiovascular disease, and endometrial cancer.
Below, are some of the many ridiculous things women with PCOS have been told by their doctors. Of course, if you find yourself seeing a doctor for PCOS symptoms, it’s best to get a second opinion, especially if something they say feels off.
“When I was 19, I was diagnosed with PCOS and a doctor told me I had ‘zero chance of getting pregnant without fertility treatments.’ I was absolutely devastated about what my future would be like when it came to having children. I am now 33 years old and 27 weeks pregnant! My husband and I conceived naturally on our first try. While it’s well known that PCOS can cause irregular cycles and possibly makes conception difficult, no woman should be led to believe that they’re definitely infertile because of PCOS.”
“Without a doubt, the most ridiculous thing a doctor told me about my PCOS was when he was trying to explain my hormones were causing this. He said, ‘You have the equivalent of rocket fuel in your sedan engine,’ which made me feel lousy that androgens equaled awesome rocket fuel, and estrogen was just some clunky station wagon. Not an empowering outlook.”
“Having seen multiple mainstream, holistic, and naturopathic practitioners to treat my syndrome since 2011, I’ve treated my PCOS with both traditional meds (i.e., Metformin), but have managed my PCOS symptoms holistically now using alternative therapies for several years. I can say that, overall, the contradictory information one receives is alarming, and the overall lack of understanding there is around the syndrome. But perhaps the ‘most ridiculous’ thing I’ve heard from a doctor is, ‘Well, we really don’t know what causes PCOS.’ You can imagine how frustrating that can be when this syndrome affects you on so many levels!”
“I was diagnosed with PCOS 10 years ago. I have seen over eight gynos and six primary care doctors — all giving me different diagnoses and prescriptions to help. The fact is that doctors have not really discovered exactly how to fix PCOS, and they insist on treating it solely as a reproductive issue, ignoring all of the endocrine/neurology aspects of this illness.
The top five all-time ridiculous things I have been told are: 1) When I was 160 pounds, they said, ‘You are morbidly obese and need to drop your weight to 105-110 pounds because you are 5’3”’ (I would look like a skeleton); 2) Me, several years later at 210 pounds, they said, ‘You need to lose about 80 pounds, possibly more, to stabilize your condition. Good luck though, because women with PCOS find it near impossible to lose any weight.’; 3) Went to a male OB/GYN with my sonogram/transvaginal scans that showed several polyps in my uterus, as well as cysts all over the uterus and ovaries. He dismisses my scans (not two weeks old), does another transvaginal in less than five minutes, hardly even looking at the screen, when he says ‘All clear!’ and runs out of the room to see his next patient. (I went to another doctor who removed the polyps.)
4) After bleeding for three months straight, it got heavier one day, where I was soaking a large overnight pad in less than 30 minutes. I called my doctor’s emergency phone line. She told me it was normal with PCOS and that I was fine. At 10 a.m., my husband rushed me to the ER, where they informed me that I was so close to needing a blood transfusion and that we’d just made it in time to stop the bleeding; 5) After telling a doctor that the birth control pills I was taking for PCOS made me depressed, anxious, and suicidal, she said my only choices were to continue taking my birth control or to continue bleeding ‘till it decides to stop.’ (Today, I am on a pill that works, Blisovi Fe 1.5/30, and hardly have any side effects; my doctor never took the time to try other options when there are so many!)”
“I run blog and organization, The Broken Brown Egg, to raise awareness about PCOS and infertility issues. Recently, my organization also partnered with my sorority, the Zeta Phi Beta Sorority, Inc. - Tau Xi Zeta chapter, to launch a full-scale social media campaign for PCOS Awareness Month. I once had a doctor say to me, ‘You don’t have PCOS because you don’t have cysts on your ovaries. Everybody thinks they’re a doctor these days because of Google.’ I immediately got a new doctor. She didn’t mean any harm, but she taught me to be an informed patient and active in my own care.”
“When I was 16 and diagnosed with PCOS, my doctor immediately told me I couldn’t ever have kids. I’m now 26, and my new gyno actually told me the truth, so I went 10 years being sad about not being able to have kids ‘cause that doctor was uninformed.”
“My first gynecologist knew that I was heavy, had irregular periods, and all of the other classic signs of PCOS. He tested my thyroid and found that to be fine, so he told me that I just needed to exercise more and eat less. I was already taking dancing lessons and playing volleyball on a regular basis, as well as weighing my food and following the Weight Watchers program at the time, but I was still having issues.
Eventually, I ended up with another gynecologist who informed me that I had Stein-Leventhal syndrome and that there was nothing to be done. He suggested that I go and get some books at the bookstore to read up on what I was going to be dealing with.
My next (and current) gynecologist is awesome. She knew exactly what I was dealing with and reviewed my options with me so that I could make informed decisions about my future and how I wanted to handle my symptoms.”
“When I was first diagnosed with PCOS at 15, the only doctor available to me was a hormone expert, a male endocrinologist. He took one look at me, told me that I was a secret eater and it had to stop, and prescribed these awful pills for diabetes. When I started taking the pills, the prescription was for 250 mg a day of the literal salt pill. They gave me awful blinding headaches, and made me sluggish and miserable.
I went to see him a few more times over two or three years; each time, he would scold me for ‘secret eating’ and not taking the pills that made me feel sick, and then he would up the dosage. By the last time I saw the quack, he had me at 850 mg a day. For the next six years, I let my PCOS go untreated since there clearly wasn’t a cure that didn’t make me feel worse: no periods, uncontrollable weight problems, and spiraling depression all through my 20s. I developed an unhealthy relationship with food because the doctors all accused me of secret eating, even when I wasn’t eating at all.”
“I had a sneaking suspicion something was wrong with me when I was 18 and only having menstrual cycles once or twice a year. After reading up on PCOS, I went to see an OB/GYN for a checkup and to inquire about my possible condition. Toward the end of that checkup, I told her I think I might have it. She was taking notes, looked up, sized me up, and said, ‘No, you don’t have it. Normally, women with PCOS are obese, and you’re not obese.’ No lab tests or anything.
A few other OB/GYNs and endocrinologists later, someone took my condition seriously and ordered lab work for me. After looking at the results, an endocrinologist told me, ‘Yes, clinically, you do have it.’ She proceeded to sneeze in her hand and then use the computer mouse.”
“I have PCOS. This is a bit backwards, but I had a doctor do a laparoscopy on me and she told me I had a PCOS cyst on my ovary. It ended up being an endometrial cyst that was hemorrhaging blood and about to burst — and I ended up back in the ER, passed out in pain and had to have an emergency second surgery. The doctor’s misdiagnosis was the reason I needed a second emergency surgery.”
All in all, like Medlin says above, it’s important to be your own advocate when it comes to your health. If something a doctor says does not quite feel right to you, it’s perfectly OK to get a second opinion.
“It is very important to correctly diagnose PCOS so that underlying metabolic and reproductive issues may be discovered and treated,” Dr. Amy Schutt, a reproductive endocrinologist at the Family Fertility Center at Texas Children’s Pavilion for Women in Houston, tells Bustle. “I call PCOS the ‘canary in the coal mine’ — which is an old saying that means ‘to serve as a warning.’” She says this is because women often seek medical evaluation due to perceived symptoms of PCOS. “This initial visit allows us to discover and treat other important conditions like insulin resistance, prediabetes, obesity, and uterine abnormalities — issues that may be unrelated to the presenting problem,” Dr. Schutt says.
She adds that women who are not taking birth control pills and who have periods less than every four months need to be evaluated because they are at risk for abnormalities of the uterine lining. “Women with PCOS are at risk in the future of developing type 2 diabetes, metabolic syndrome, uterine cancer, and possible heart disease,” Dr. Schutt says. “So it is very important that we identify PCOS when women are young and when we can best intervene.”
So, if you are experiencing PCOS symptoms — or just odd symptoms in general — it’s best to see a doctor. And if you have doubts about what they say, getting a second or third opinion is a good idea.