It has been 20 years, but I will never forget the day I first heard the term PCOS (well it was PCOD back then, but I digress) or how my life has changed since.
PCOS, also known as polycystic ovarian syndrome is a diagnosis that I hear talked about often. On mainstream television, commercials, even in my social groups. PCOS is a term thrown around in day to day conversation, yet something is missing. I will start by saying that I am not a medical professional. As I write this post the experience, treatment, etc is only what I myself have experienced while battling (and goodness do I mean battling) this disorder every day for the past 20 years. My hope is that by being honest it will make someone else know that they aren’t alone. For as much as this topic has been discussed, it’s always portrayed as though it really isn’t that bad and is something easy to manage. Personally, I have found reality to be so very different.
By my 16th birthday, it was becoming more evident that something wasn’t right. Aunt Flo’s visit wasn’t as regular as it should be and when she came to town my life became a scene out of a Carrie movie. If having your menstrual cycle as a young teen isn’t enough of an embarrassment, I found myself trying to cope with never knowing when it would come, then losing so much blood volume that at times I would pass out. My mom (may she rest in peace), having dealt with this to some extent herself, got me to the pediatrician for advice/help. His first thought – I was a little person. How that was missed for 16 years one could only guess, however, he was about 97% sure that had to be the reason behind my struggle.
That was soon quashed by his partner who pointed out my limbs were too proportionate to my body. Her thought was I was menopausal. Or at the very least in a state of pre-menopause. To her credit, my symptoms did fit. I was having hot flashes, inconsistent cycles, heavy ones at that. She suggested a trip to the GYN. Off I went for my first full exam and my official diagnoses. At that point in time, I was thin and fit. He assured me I would be fine. Modern medicine would help me get pregnant. Weight, at the time, wasn’t an issue. He put me on birth control and sent me on my way.
I lived under the lie that all would be ok for several years. When the weight started to come on even though I was teaching fitness classes four to eight times a week, I figured it was from stress eating. When my moods would change and I would have cramps that put me on my knees, I ignored it. The medication had to be working, my cycle was regular at least.
After 14 months of (unsuccessfully) trying to get pregnant, we went to the fertility doctor. I found out there is more than one type of PCOS. I, at the time, had insulin resistant PCOS and needed high levels of metformin to help regulate my body. My mother died at the age of 59 from a heart attack. Mom most likely had PCOS, but was never diagnosed. Her early death means I’m at higher risk also for heart attack and stroke. He informed me pregnancy was attainable, but fertility assistance would most likely be needed. It was. Two years of trying finally lead to my daughter coming. Pills, needles, IUIs, disappointment and then a pregnancy with complications. More fertility treatments again 3 years later. This time with extra needles, pills, IUIs lead to a multiple pregnancy and twins born at 35 weeks.
Just when I thought I had a handle on it, my PCOS changed. Insulin resistance can come and go. The metformin attacked my body causing my stomach to stop working. I stopped taking it and thankfully recovered. My hair started falling out in clumps. My doctor explained that many women with PCOS suffer from male pattern baldness. I was finally able to work with a PCOS specialist who helped me lose weight after years of trying. I was on birth control for hormone support, but my body finally chose to work and I unexpectedly got pregnant (a blessing that we didn’t think was possible)!
20 years later and I still don’t know that I have a handle on it all. Each new symptom brings new frustrations and confusion. Birth control that helped now causes severe depression. Thick hair has turned into embarrassing bald spots. Inconsistent cycles are now regular and frustrating.
PCOS is not the same for everyone. For some, it means excess facial/body hair, weight gain, and infertility. For others, missed cycles and cysts. Regardless of the symptoms, we are all in the same boat and paddling together is easier than paddling alone!
What is your experience with PCOS?