Living With PCOS ~ My Personal Story

September is PCOS Awareness Month and I wanted to add a personal touch this very real and often debilitating disease. I was 13 when first diagnosed, and have been living, managing, and struggling with it for 20 years. Let’s come together and raise awareness for this disease.

***This post has been updated and republished. It was first published in 2014***
 

Broken Dreams

Most of us grow up with this notion of a perfect life with 2.5 children, a dog, maybe a cat, living on a large property with tons of room and land to have all the fun you want.

Most little girls grow up planning their entire futures. In fact, by the time some are 15, they know the kind of wedding dress they’re going to wear, whether it will be a small wedding or a huge wedding, they can even picture the man they will marry. They also know the exact number of children they will have, and what each of their names will be

Then we grow up, we get to have our wedding, marry the man of our dreams, and then we get to work on that exact number of children we planned on having.

Month after month, we chart, we take our temperatures, we have sex and we wait…we wait. Every cycle begins with a glimmer of hope and ends with despair.

It repeats.

Over and over again we put our hopes up, only for that unsightly evil red blob to stomp all over our hopes and dreams. This can go on for years, and sometimes with no end in sight.

Sometimes Aunt Flo doesn’t show up at all, bringing our hopes up even more, nope nothing. We can thank PCOS for that!

What Is PCOS – Polycystic Ovarian Syndrome?

Polycystic Ovary Syndrome (PCOS) is a hormonal, metabolic, and reproductive disorder that affects women. It is a leading cause of female infertility. PCOS can lead to other serious conditions including depression, obesity, endometrial cancer, diabetes and heart disease.

PCOS is tricky to diagnose sometimes and there are women who go undiagnosed for years. The truth of the matter is that the longer it takes to diagnose the harder it is to treat. There are some key factors in how PCOS manifests itself and how it affects women:

PCOS Can Affect:

• Menstrual cycle
• Ability to have children
• Hormones
• Heart
• Blood vessels
• Physical Appearance

With PCOS, women typically have:

• High levels of androgens – which produces unwanted body hair
• Missed or irregular periods
• Many small cysts in their ovaries

PCOS contributes to over 5 million women with infertility problems. That accounts for almost half of all infertility patients. While PCOS is treatable, it is not curable.

Diagnosing PCOS

I remember being thirteen in that exam room, my mom next to me. In walks the doctor, looks at my face, my back, and my chest.

He then looks directly into my eyes and says, “You will never be able to have children, this is the worst case of Polycystic Ovary Syndrome I have ever seen.”

I just started to uncontrollably sobbing!

My mom grabbed my hand, called the doctor a few choice words and ran me out of that office. That was the worst day of my life!

My mother quickly found another Pediatric Endocrinologist, and the testing began. They drew vials upon vials of blood, they did ultrasounds, and then, after months of waiting, the diagnosis arrived.

“The worst case of PCOS they’ve ever seen!” Yes, that’s right, two doctors in a row said the same statements, but the new doctor said it with such compassion that it made it somewhat bearable to hear those words repeated. My androgen levels were extremely high which was causing the extreme hair growth.

Treating PCOS

His recommendations were Glucophage (Metformin) and birth control pills.Which is the usual form of treatment for PCOS.

The Doctor, who was very compassionate, caring, and had wonderful bedside manners, explained all the pros and cons and in simple terms told my parents, “The birth control pill, will help her get her period every month, it will also help with the hair growth in slowing it down along with the glucophage.”

While this is true, my parents were still hesitant. They had “The Talk” with me and when they realized that I would not use the birth control pill to run around and have sex with all the boys around town, they agreed.

Being on birth control and glucophage, really did help me. It helped me lose weight, and it shortened the amount of time it took for the hair to grow back. This seemed perfect to me. I was just starting high school, and I was already very self conscience. The weight loss along with the birth control pill helped restore my irregular cycle.

Things were looking up for me, until I went to college and my mom lost her insurance and I couldn’t receive my medications anymore. I ballooned right back up, and the hair that had actually become less grew in thicker than ever. This is the beginning of when my hopes and dreams began to dwindle and die.

I joined weight watchers, because unlike popular belief, women with PCOS don’t enjoy eating. As a matter of fact, for many women, we lack appetite. Sometimes we actually forget to eat, and because there are many diabetic symptoms associated with PCOS, our sugar drops and we start feeling sick. Only then do we realize we hadn’t eaten all day.

Not eating actually allows your body to store all the extra weight, fat, and carbs, which then turns into weight gain. Over the course of a year I had lost 155 lbs with Weight Watchers. This restored my period some. One time I went a total of eighteen months without a cycle. This is not uncommon and it can happen.

Here is a breakdown of the most common treatments for PCOS according to womenshealth.gov:

• Lifestyle Modification

 

• • Limiting processed foods and foods with added sugars
  • Adding more whole-grain products, fruits, vegetables, and lean meats to your diet

This helps to lower blood glucose levels and improve the body’s use of insulin. It helps normalize hormone levels in your body. A 10 percent loss in body weight can restore a normal period and make your cycle more regular.

• Birth Control Pills

• • Control menstrual cycles
  • Help with hair growth
  • Help to clear acne

Please Remember that if you stop taking the pill, your cycle will become skewed again, as I mentioned earlier. Mine did it. Provera which is mostly estrogen does help block the androgen hormone, but it does not help the hair growth. As a matter of fact doctors usually give Provera only to help induce your period if it has not shown itself in over a month.

• Diabetes Medication
  • Metformin (Glucophage)
• Clomid
  • Used to help ovulation and egg function during infertility

There are other treatments as well, especially if, you’re trying to make that childhood dream of yours come true. Rest assured that we will talk about it, especially because it’s so close to my heart. Infertility is a major side effect of PCOS.

There’s much more to PCOS than what I have stated above. Stay tuned for infographics, interviews with real people, events and much more.

Do you or someone you know suffer from PCOS? How have you all dealt with it?