I’m going to answer my own question – no. Do I think it’s regularly misdiagnosed or not understood? Absolutely. Let’s start from the beginning.
My PCOS Background
It was 2010 when I first heard about Polycystic Ovarian Syndrome. I was doing a show for UMaine’s summer stock theater and met a bunch of great people. One woman told me how her daughter had PCOS, and would go to bat that I had it too.
I had known for years that something was wrong with me. I just never had a term for it before. There were several missed periods, weight gain, inability to lose weight, excessive hairiness, and so-so much more that always made me feel less than a woman. So, after my discussion with this woman, I decided to see my doctor.
The first time I saw my doctor I was in college and didn’t have much for income. I didn’t jump to conclusions, simply told her my symptoms. She had a few theories about what I was experiencing including Cushings Disease and PCOS. Her first suggestion was to see an endocrinologist. I asked her if we could try ruling things out before seeing a specialist so that I could try to save some money.
She sent me in for blood testing. I walked out several blood vials short. Although, the blood testing said I had high cholesterol, higher than usual hormone levels, and my blood sugar was on the higher end. Nothing stood too far out in the realm of possibilities. There was still no clear diagnosis.
So, she sent me to get internal and external ultrasounds of my uterus. It showed that I had cysts and past scaring from cysts. Yet, simply having cysts was not reason enough to be diagnosed with PCOS. She again suggested I see an endocrinologist. I held off.
The next year or so I worked on losing weight and eating better. I lost about ten pounds in a year. It was beyond discouraging.
One ER visit later…
It took almost two years and an ER visit to shake me into reality. I woke up with incredible vertigo. I felt so funny– I wasn’t even inside my own body. It was ethereal in the sense that I could not physically take hold of my own person. I was tired, dizzy, and not myself. I went to the ER…
Where they determined that they couldn’t find a single thing wrong with me and that sometimes vertigo “just happens.” They prescribed meclizine; a glorified dramamine that simply made me more tired.
I went to see several specialist including a neurologist. Several blood tests, an MRI, and this funky test later…
Enough was enough. I spoke to my family about what I was experiencing and finances. Luckily, they supported my decision to go see an endocrinologist after all the trouble I had. I wasn’t in the endocrinologist’s office more than 15 minutes when she had me diagnosed with PCOS.
She said, “You have to have three of the major symptoms in order to be diagnosed,” and so she looked at my breasts, my neck, my belly, my face. She looked at all of my previous blood test results and ultrasounds. And determined that yes, I definitely had PCOS.
She asked me TONS of questions about my medical history, personal questions, about weight loss and gain. She determined that I should be put on a better birth control and a low dose of metformin to control my blood sugar. Euphoria rushed over me; I finally had an answer to my problems.
(p.s. For those curious, I read a book called, “The Sugar Solution” by the Editors of Prevention Magazine, which had a section on PCOS and explained that the vertigo could have been caused by having high blood sugar. It went away when I cut out sugars and complex carbohydrates.)
Misunderstandings & Diagnosis
At this point, you must be wondering why I asked if PCOS is a fad. Let me explain – since my diagnosis in 2012, everyone I’ve mentioned it to has their own relationship. For example they say, “Oh, I have that…I have cysts on my ovaries,” or, “My doctor put me on metformin for that,” or, “The doctor told me I had that, but when I went back they said it went away.”
If you look for data on how often it’s misdiagnosed, you probably won’t find anything reputable. However, they estimate as many as 1 in 10 women have PCOS and it can start as early as puberty. If you read the symptom’s list you’ll see things like:
- excessive hairiness
- missed periods
- high blood sugar
- high cholesterol
- depression and anxiety
- and of course, ovarian cysts.
Does anyone else see the problem with these symptoms? If not, I’ll explain. Many of the symptoms are conditions in their own right, but not everyone who has these symptoms has PCOS. So, when people approach me with “I miss periods all the time” or “I had it, but I don’t have it anymore.” It’s really frustrating.
The doctor told me PCOS symptoms can improve after diet and exercise changes. I’ve lost 30 pounds, do I still have PCOS? Yes. Have many of the symptoms been reduced? Yes. If I start eating bad again and gain weight will my symptoms return? Yes, PCOS is not something that can just go away and doesn’t reflect just one symptom. There are some symptoms you will always have regardless of weight.
My point here is that just because you have one symptom, doesn’t mean you have PCOS and you can’t just “get better.” You can treat symptoms with medications separately, but the only real management program is to eat well and exercise.
PCOS has been getting more publicity of late, but not enough for people to truly understand it. It’s becoming “fad” like due to lack of understanding. With that being said, I implore you to share this post and bring more awareness. Who knows, maybe we can “go to bat” for other women with the condition — like the woman I met at the theater.
If you have Polycystic Ovarian Syndrome, we’d love to have you share your experience with it below.