Is Polycystic Ovarian Syndrome a fad?

women generational

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.

Diagnosis

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.

nana&mum

The women who made me possible–my grandmothers.

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…

SAMSUNG

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
  • overweight
  • depression and anxiety
  • acne
  • infertility
  • 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.

Fact: You can  have cysts on your ovaries, but not have PCOS and vice versa.

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. 

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3 thoughts on “Is Polycystic Ovarian Syndrome a fad?

  1. Pingback: How to Manage Your PCOS | Thrifting & Bitching

  2. As the founder of a large PCOS support group, I hate even the mention that PCOS is a fad. As soon as enough people call it a fad, more people will start saying that PCOS doesn’t exist and it’s all in our heads. This happened with gluten, and has hurt the people who are actually sensitive to gluten, whether they have Celiac’s or not. I’m so glad that PCOS is finally being spoken about and recognized, because it means that more women are looking for the right information. Yes, the symptoms that you listed can have different causes on their own. It’s the combination of several of them that potentially signifies PCOS. Honestly, I’d rather have more women improperly diagnosed (after being tested for Cushing’s of course) then not diagnosed at all because more women speaking out about it and trying to find ways to fight it means more publicity. As long as PCOS is getting news, more companies will be interested in trying to find better solutions. In the last 10 years since I was diagnosed, new supplements designed for PCOS have started showing up on the market, and they have been helping! Research is being done and we understand PCOS more now than we ever have. When I was first diagnosed, I had two options only. Birth control or Metformin if I was trying to get pregnant. Now women are learning that they don’t have to take these medications to manage symptoms. This is all because PCOS is finally getting the attention it needs.

    And…. as long as PCOS is in the spotlight, we have a better chance of the proper research to actually find a cause. Where did it come from? What can we do to prevent it? Will we ever be able to come up with a cure? These questions aren’t appealing to researchers unless they know it’s important, unless it’s necessary.

    As for your comment “the only real management program is to eat well and exercise.” This is partially false for the women with PCOS that have never had weight issues and have always been active. Up to 50% of women with PCOS are at a normal weight, or even underweight. They may or may not have the same insulin resistance issues. I have met some of these women. They are discouraged because everyone is always spouting off the same recommendations – lose weight, eat right and exercise. If they are already eating properly and exercising, what else are they supposed to do? Studies have even shown that “thin cysters” could have more issues with birth control and actually start to cause more problems and might bring on insulin resistance. We’re potentially making things worse instead of better! Without the proper research, we can’t help them. We need PCOS in the spotlight to truly help every Cyster.
    Summary article about thin cysters: http://www.pcos.com/blog/39/thin-with-pcos-“how-can-i-have-pcos-if-i’m-not-overweight”/

    Alright, there’s my two cents 🙂 And because this is the internet, and you can’t really express emotion properly, I want to assure you that I’m in no way mad, upset, or angry, just in case my post seemed to sound that way to you.

    Liked by 1 person

    • Hi Lynne – Thank you for your input!

      What prompted me to write this article was that I was experiencing several women self-diagnosing themselves or blowing off the condition because they “knew people” who had PCOS and they didn’t think it was real. Between those two generalizations (and I’m sure more), I also realized that it was quickly heading towards the “Gluten Diet Fad” and wanted to quickly stomp that out. Unfortunately (and sometimes fortunately), what I’ve learned in digital marketing is that key words like “fad” are sometimes the only way to get people to read what you’re writing. (It got you to read it, right?)

      Thank you for sharing the information about cysters who aren’t overweight. Although I’m aware that they exist, from my words, my readers may not be. Where I don’t believe my symptoms would ever completely disapear from diet and exercise, I know they significantly decrease.

      This information may be more for my readers, but for the women with lean PCOS, their condition stems from their body’s inability to balance hormones. Some foods can wreak havoc with our hormones no matter what size we are (soy, gluten, dairy, meats from animals treated with hormones, etc.). Eating well and exercise are still management options for them – whether they have insulin resistance or not.

      It’s as you said, Lynne, everyone is spouting the same recommendations – lose weight, diet, and exercise, but for those with PCOS sometimes it’s just not that easy. I apologize if my statement seemed like the Staples “easy button.” We both know that isn’t true.

      Again, thank you for posting – without your comment I wouldn’t have thought to bring up issues with lean PCOS. It’s great to have support from other cysters to help spread the word.

      Like

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