Now this here's the story all about how my life got flipped, turned upside down

I have always been a big girl. My whole life really. It was something I was tormented relentlessly for by peers, brothers, and my mother. I was the fat girl, and it was MY FAULT for eating myself fat. I craved carbs, sweets, and all those things that were “not good for you”. I got bigger and bigger until I reached 200 pounds my sophomore year of high school. 200 pounds! For someone who played softball half the year and did competitive marching band the other half, I couldn’t understand why this was happening to me. I really didn’t eat all that bad. I ate McDonald’s probably more than I should have, one of the disadvantages of working there, but I didn’t eat the way some of my friends did. And, I was more active than any of them. But, still, I was the only one topping the scale at 200 pounds. It was heartbreaking to be a teenager with that much weight to carry. Even worse was where I carried the weight… all in my back and stomach. I couldn’t possibly be lucky enough to have some of the weight create voluptuous curves giving me the typical pear shape seen in beautiful women. No, I was fat. No way around it. And, nothing I did changed it… not dieting; not exercising; not my mother’s fits demanding I skip dinner; nothing changed my body.

I was a late bloomer as far as getting my period. I had breasts pretty early, thanks to my mother’s genes, and developed body hair at the right time, but I did not have my first period until a week before my 15^th birthday. I was a freshman in high school. My periods are awful. I have extremely heavy bleeding and cramps that rival the worst pain I have ever experienced in my life. Not only is the bleeding heavy, it is clotted. I asked my mom if this was normal, and she said hers were exactly the same. Nothing to worry about, totally normal. So, I have suffered through the cramps and heavy flow since the very first one.

At 16, I began having the most god-awful migraines describable. The headaches were crippling, and made schoolwork incredibly difficult. My mother began to worry, and took me to the doctor who ordered a five hour glucose test to test for diabetes. Given my weight and the headaches he assumed that I was a juvenile diabetic. He was wrong. The test revealed that I had a pretty severe case of hypoglycemia, which is where the body over-reacts to simple sugars, and releases too much insulin. According to the doctor, the sugar highs and lows were causing the headaches. He referred me to a nutritionist who told me to eat more complex carbohydrates, like pasta, whole wheat bread, etc, while avoiding the sweets I loved, mainly ice cream. She said it would help my headaches, and for some time it did. But, there was more going on in my body than low blood sugar.

I also had some major issues with anxiety and depression, which have continued into adulthood. I have seen many counselors and therapists, and have taken six different types of antidepressants to help me cope, sleep, and survive the day. I’ve always thought that the emotional stress was tied to a difficult childhood, a stressful work environment, and the everyday self pity I have for being so heavy. It is a vicious cycle that feels worse than PMSing all month long. I began to hate myself.

In college, I began to notice another change. I was gaining weight again. But, it wasn’t the normal freshmen 15. And, then, out of nowhere, my periods stopped. I went three months without so much as a spot. Since, I was not sexually active, and doubted I would qualify as the mother of Jesus, I assumed I had a problem. So, I went for the first time ever to a gynecologist, the only woman at the clinic my mother went to. This woman told me that it was the weight gain that caused my periods to stop, and that I had to drop 20 pounds with diet and exercise, and in the meantime take birth control to “regulate” my periods. I hate birth control, because it makes me nauseous, but it did the trick, and I began to have regular periods again. I did not lose the weight, really, but I did I have a period nonetheless.

Now, at age 29, I am successfully off psychiatric meds, happily married, and trying to get pregnant. And, all of these “random”, and “unrelated” symptoms keep popping back up, and new ones are emerging. I now have acne on my face; something I never experienced in adolescence, and dark hair on my inner thighs and stomach. I also have what I refer to as “crusty nipples” from time to time. Worst of all, I gained 45 pounds in two years without changing anything that I ate or did (I have successfully lost 25 of those pounds doing Weight Watchers). I have not had a period on my own in over a year. I have recently been diagnosed with a thyroid disorder. And, the big kicker, despite effortless trying my husband and I have been unable to get pregnant. I have polycystic ovarian syndrome (PCOS), and I never saw it coming. Every single symptom I have described to you from the time I was 15 and began my period was an underlying symptom to a major problem. And, since I went undiagnosed for so long, I am now paying the price of suffering through infertility. My worst fear.

I did everything right. I waited to have sex until it was with my husband. I was 27 when we met. I lead a good life that was self sacrificing at times. I worked as a teacher, who literally did everything for my kids. And, now that it is time to have kids of my own with the man I married, I am failing miserably.

I was diagnosed with PCOS and a thyroid disorder by my current gynecologist. My primary care doctor told me that the lack of periods coupled with the headaches and dizziness meant I was pregnant, even though I told her that I had taken three negative tests- she’s an idiot, which is besides the point. My gyno referred me to one of her colleagues who is an endocrinology fertility specialist. He also turned out to be an idiot. His only solution was Synthroid and “come back to see me when you’re ready to try Clomid”. For those of you who do not know, Clomid is often the first medication given to fight infertility. It is cheap and only quazi-reliable. It is more reliable when it isn’t given out like candy, and the woman’s hormones are maintained through other means. Basically, even if we would have started on this medication it would not have worked for me, but I only found that out after switching doctors. The main reason for the switch was the ridiculous $500 price tag our first doctor was putting on the Clomid. I’m still not entirely sure why he wouldn’t bill our insurance for it, but “that’s just how much it costs here”.

The most recent doctor my husband and I have been seeing is amazing. Dr. Smith has worked really hard to balance my hormones, so much so that I am both relieved by his efforts and annoyed that we haven’t actually started fertility treatment yet. We’ve been seeing Dr. Smith since April. And, we have seen him A LOT! I now know that not only do I have a thyroid problem, but that I also have elevated prolactin levels (which is why I get crusty nipples), insulin resistant hormones (which is why I am hypoglycemic and crave carbs, which it turns out are actually bad for me, and why I gain weight easily and struggle to lose it), and I have ridiculously high levels of testosterone (hence the dark hair and acne). I have PCOS, but Dr. Smith likes to break it down into all the actual complications that I experience, because it is not only easier to understand, but it makes my diagnosis not a red flag in my medical records. It also is a way around the military insurance, which really doesn’t pay for infertility treatment, but will pay to treat hormonal imbalances. The only new thing to arise since I’ve been seeing Dr. Smith is that my hair has been thinning, and I already have baby fine hair. But, the thinning has become less frequent as he adjusts my meds.

About a month ago, my husband and I took a major step back in my mind, because Dr. Smith put me back on birth control. My testosterone levels haven’t decreased, and my estrogen levels are still pretty low. After checking for a tumor (by far the scariest moment of my life), and discovering none (one of the most relieved moments of my life), he decided to try to “trick” my hormones into working again by putting me on a high level of birth control for two months, and then repeating the lab work to see if it was successful.

This is where we are right now. I have just finished month one of the birth control, and have to wait three weeks before he repeats the labs. I hate the waiting game, because my mind races with possibilities. Will it work? What if it doesn’t work? What if it does work? What will be the next step? Will we ever have a baby? What treatment is too far? When should we give up? Why is my body so screwed up? Why can’t I make my husband a daddy? Why can’t I be a mommy? Why me? And, so here I am, waiting again. Praying that God will fulfill His promise to give me the desire of my heart. And, I am completely broken. I love the life my husband and I live. I love how much we love each other. I love our dogs that are our children. I love him more than I can ever imagine loving another human being in my entire life. But, I am broken completely by four little letters: PCOS.

This blog is meant to be a support to those women who suffer from this heartbreaking disease. Approximately 5 to 7 million women in the US suffer from PCOS (Vliet, 2006). It is the most common cause of infertility in women in their most fertile years (under the age of 35). And, the long term effects can kill you. It is depressing, painful, and deadly. It is also incredibly under diagnosed, because many women (like me) see a different specialist for each symptom and the dots are never connected. I am learning so much on this journey. I hope you all will learn with me. And, I pray for a happy ending for myself, and my fellow PCOS sisters. I plan to include everyday life stuff, research I am doing, and the journey toward parenthood that my husband and I are taking. Thank you for reading. God bless. --- April

*Vliet, Elizabeth Lee (2006). PCOS: How to regain energy, vitality, and 

            hormone balance. Tucson, Arizona: Savvy Woman’s Guide Publishing.