I’ve been debating writing this letter for about a month now; especially since I’ve made it into my second trimester with this pregnancy. I suppose, though, that spreading this information around to everyone is more important now than ever. I apologize if it turns out to be so long, but I’ve got a lot to say.
As a few of you may know, I was diagnosed with Polycystic Ovarian Syndrome (PCOS) when I was probably thirteen or so. It was around the time I started having menstrual cycles, I remember that much, only because they were so irregular and so very painful – bad enough to keep me from school, from fun activities, from anything and everything. My mother started taking me to see various doctors, until she got the answers she wanted. I must’ve been to see at least five different doctors, with each and every one of them running their own battery of tests. I had so much blood drawn that I asked for a spigot to be implanted in my arm. I had good phlebotomists, and very, very bad ones. I had sonograms, brain scans; you name it, I probably had it. All before I even got into high school. I remember that my parents also had to fight insurance a lot to cover treatment for me – I had detached myself from this whole process because it seemed as if all the doctors thought I was a stupid moron, and never wanted to explain what was happening TO ME. Needless to say, I honestly remember very little of any of this, except that there was a lot of poking, prodding, pain, and discomfort.
Before I go any further, though, perhaps I should explain exactly what PCOS is, and what it does to women who have it. It’s a very complicated, difficult to diagnose disease which is often missed by many doctors. Some of the classic symptoms are drastic weight gain (with tremendous difficulty in losing the weight), hair loss, depression, fatigue, thyroid problems, high cholesterol, panic attacks, headaches, dizzy spells, poor memory or muddled mind, sleeping disorders, constant thirst, extreme cravings (especially for sweets or carbohydrates), insulin resistance, cystic acne, multiple cysts on the ovaries (typically in a “string of pearls” formation), anovulatory menstrual cycles (cycles without ovulation), irregular cycles, severe mood swings, high testosterone levels, infertility problems, hirsutism (excess hair growth), increased risk of heart disease and diabetes, and increased chances of miscarriage. It’s a daunting list, I know, which is what makes it difficult for an accurate diagnosis. A woman does not have to have every symptom listed to be diagnosed with PCOS. Many doctors are not well-educated enough about PCOS to understand that this disease seemingly picks and chooses its symptoms, leaving many women with incorrect diagnoses, and much more frustration. This leaves many women feeling alienated, because she doesn’t know what exactly is wrong with her, only that something is definitely wrong; oftentimes, it causes problems in relationships she may have, as well.
I have always been a chubby girl, even when I was very physically active. I started taking dance lessons at age four, and quit at age ten to start playing soccer. I played indoor and outdoor soccer until I was sixteen or seventeen. I was a soccer referee starting around age thirteen, I think, and I became a coach at age fifteen. Yet I was still unable to lose any weight, even though I was at soccer practice 4 days a week; 2 as coach, and 2 as a player. I was out on the fields all day on Saturday, too, but still…? It’s always fun to be that age, and be overweight. I’d always heard comments from kids in school; you know, the occasional jock who thought it was hilarious to moo at me as I walked by, or the people who would pretend an earthquake just struck as I sat down. The sad thing was, I was not even that big.
I also remember when I started growing the hair I shouldn’t have. It was seventh grade, and I had just switched from a Catholic school to the local public junior high. Some of the boys who sat near me in my first hour English class thought it was quite amusing to tell me that I needed to shave, or that I had more facial hair than their older brother or father or whomever they felt like comparing me to that day. Yeah, I would usually tell them to come back when they’d successfully grown a brain, but their taunts still hurt. And in eighth grade, a really rotten boy somehow got hold of my yearbook and drew a beard and mustache on my picture. My mom complained to my principal, but all he really said was “boys will be boys” and left him unpunished. Oh, he did offer to trade books with me, too, but mine was already signed by all my friends, and as much as I hated that picture, I didn’t want to lose the good memories. So, somewhere among my things stored away is my eighth grade yearbook picture, complete with hand-drawn graffiti. I’m sure I’ll jump at the chance to show that to my children.
Also, around this time, I was visiting one of my doctors. I don’t remember what kind of doctor he was, only that I didn’t really care for him. I remember him telling me very insensitively that I would NEVER have children. Imagine you’re a preteen girl, who’s probably just started thinking about her future life. You’ll go to college, get a job, get married, have a family, and live happily ever after, the end. This doctor was telling me that part of my dream would never come true. It was as if it was all a huge joke to him. This was quite heartbreaking, because I’d always worked with children – from being a teacher’s aide to all the babysitting, to working in a daycare – and I was going to be a grade school teacher when I grew up! I most certainly wanted to bring my own children into my life! But he said I wouldn’t! He didn’t tell me there was a chance I might not; no, he just said NEVER. A lot can happen to a young woman between the time she’s twelve and the time she’s ready to have children, and he certainly seemed confident that he knew my future from the beginning. I was heartbroken for several years, until I finally decided that I WILL have children if I really want to. Fortunately I now see a doctor who’s a bit more realistic; he told me that it may be difficult to conceive on my own, but not impossible, because he certainly can’t see the future, and stranger things have happened.
PCOS has affected every aspect of my life – in bad ways, and in good ways. For a very long time, I was very self-conscious of my looks, because I wasn’t some stick-thin model who starved herself to death to conform to society’s mold of beautiful. It took me a very long time to get over that feeling. I had a good number of friends who liked to tell me in high school how fat they were, and how much weight they needed to lose, to be pretty. These girls were smaller than me; a great deal smaller. They took diet pills, starved themselves, whatever, to achieve the look they thought they needed to have, and when I reminded them that they were so much smaller than I was, and that if they thought themselves fat, how must the see me – I was always told that I wasn’t fat, I was just fine. Yep. And I’m gonna be pope soon. Nobody ever understood how much that hurt me. Sure, in their eyes nothing was wrong with me, but how did they affect me? They’re the ones who had the social lives, the boyfriends, the dates, the dances, prom….not me. If I wasn’t at school for play rehearsal, I was at home reading or doing homework, and not always because I wanted to.
Around the middle of my junior year of high school, things started changing for me. Not with any of my symptoms, but with my outlook on my life. It was at this time that I decided that the jerks, punks, and creeps really meant very little to me in my later life, and they could jump off a tall bridge for all it mattered. What I focused on was me – liking me for who I was, and who I would become. I was confident I would do well in whatever I would pursue, and the opinions of some small-minded jerks wouldn’t keep me from that.
Fortunately for us, PCOS hasn’t meant I will never conceive a child – yes, the road has been difficult, with my first pregnancy ending in miscarriage, but so far, this pregnancy has been very uneventful, and I have every confidence I will carry to term. Part of our success could be that I started back on my treatment as soon as I had insurance; I knew that having children was part of my future, and I wanted it to go as smoothly as possible. I am also very fortunate that I have a wonderful Endocrinologist – whom I’ve been seeing since high school or longer – and a great OB/GYN who specializes in high-risk pregnancies, of which all of mine will be. Both doctors have been monitoring me very closely, and are taking extra good care of me; unfortunately, many women have yet to find this luxury.
I am also very fortunate that my husband is so supportive throughout all of this; he’s gone to every one of my appointments to visit both my endocrinologist and my OB/GYN. I’m glad of that, as PCOS really affects him, too, and the more he knows how to help me through this, the more we can help each other.
The reason I find writing this letter so important is because PCOS is not only a hereditary disease, but some statistics show that nearly 5-15 percent of the female population is affected by it. That means that there is a very good likelihood that someone you know has it – unfortunately, she may or may not be getting treatment for it. I know that some of the women in my family have some form of it or another, and I worry a great deal. I have seen first-hand what can happen to women and their families if this disease is left untreated, and if people are left uninformed. The results can be devastating – lack of adequate treatment can ultimately lead to death by complications such as heart disease or diabetes, just to name a few. I am taking it upon myself to educate as many people as I possibly can, so that maybe more women will be able to get treatment without having to fight their doctors, their insurance companies, their families.
I’ve heard stories of women who know exactly what is wrong with them, but cannot get a diagnosis from a physician; therefore, cannot start treatment that would help. If a woman is not actively trying to conceive, many doctors will not start any sort of treatment, either. There are also some doctors who are “fat-phobic” and will tell many women that before they will even allow them to begin treatment, they must first lose weight. As any overweight woman dealing with PCOS knows (as not all women with PCOS are overweight), that’s not always easy. No matter what they do to try to lose weight, it just doesn’t come off without some help. This isn’t always the case, though. It just seems to me that doctors, who are being paid by us, would be more receptive to helping patients, rather than herding them out and dismissing their concerns with a wave of the hand. Especially since so many women respond so well to drugs that are commonly used to treat diabetics!
Around two years ago, I started taking the drug Glucophage (generic = Metformin) to help with my PCOS. Taking it helps my organs process the insulin they were not processing before, and, in doing that, it would also regulate my hormone levels. After being on it for some time, we noticed that my testosterone levels were now in the normal range, instead of being elevated. I used to be hungry all the time, which was another “benefit” of PCOS; after being on Glucophage, not only was I not hungry so often, but when I did eat, it was just enough for me to feel full. I lost a great deal of weight, and I’d done nothing to change my exercise or eating habits, other than having smaller portions. The big test came once I’d gone off birth control – would my menstrual cycles be regular? Would I ovulate on my own? Luckily for me, not only was I regular, you could almost set a clock to my cycles. This was something I never thought I would experience on my own. The pain I had known when I was younger was nearly non-existent; I would at least be able to carry on my life a little more normally. I finally started to feel more in control of my body, and, four months after going off birth control, I was actually pregnant. It was nothing short of a miracle, to be sure! Even though I didn’t carry to term, I knew, then, that I could get pregnant, and I would do everything in my power to make sure things went well the next time.
There is so much more I could say about PCOS and how it affects our entire population, but my purpose wasn’t to write a novel; only to write an informative letter to my family and friends so they can better understand what I have gone through, and what my husband and I are going through. I don’t want anyone’s pity, either; I would like people to think about how they treat others, though. There is a lot more to people than most of us could ever know by taking a casual glance at them. What I do want, though, is support. This is not always an easy road to travel, for my husband, myself, or anyone else in my family, but it is made easier by people who truly understand what’s going on.
I hope this hasn’t bored you to tears; what I really want to do is educate everyone I know. Please feel free to pass this information around to everyone you know, and don’t hesitate to ask me any questions. I want to be as up front and honest as I can be about how this has affected my life, and I expect everyone to be honest with me and ask me about their concerns. I don’t have all the answers, nor will I ever; but if, by sending out this letter, I can help one person understand PCOS better, then I have accomplished my job.
Please, take care of yourselves, and do not hesitate to contact me.
Shelly Clemons