In the belly of the whale...

Today I went back to the doctor to repeat my blood work and talk about the side effects I've been having on the birth control. I left feeling defeated and alone. My husband has been very active in this whole process, but he was unable to go with me to this visit, which added stress to the already stressful event. After every other visit my husband and I have had the long car ride home to talk about what our doctor just told us. I'm usually emotional, and the husband is great at giving me a new perspective. He typically considers any visit that our doc doesn't pull the plug a success. I can see his point, but I'm reaching a point of frustration with the whole process. Don't get me wrong, I love that our doctor doesn't want to move forward with treatments until my hormones are balanced enough to allow the treatments to be a success; but it's so hard to leave there not knowing what will come next and feeling that my body once again failed me. I really got no answers today about anything. The doctor isn't convinced that my headaches, stomachaches, sour milk taste, insomnia, or nightmares are connected to my medicine. He has given me other outlets to try before we blame the pills and change courses. I can understand his point, and am completely willing to try anything he suggests at this point. But, it was his next directive that broke my heart a little more. I have another month of birth control pills to take. I thought this would be it. Today would be the day we could look ahead; and if not today, next week after the blood results came back. Instead, the doctor told me that he feels, given the things I told him about the possible side effects I'm having, my body is ready yet. I know that this isn't our doctor pulling the plug yet, something my husband has already reminded me, but I can't stop my heart from hurting. I have done my homework and educated myself on my condition and all of our treatment options, I have become my own advocate, but I cannot make my body cooperate. I am willing to try anything to get pregnant, but I cannot make my body cooperate. My heart aches to be a mother, but I cannot make my body cooperate. I feel cheated. I did everything right, so why can't I have this? The anxieties are starting to take over, and it is becoming harder and harder to not dwell on the what ifs. My two biggest worries: what if we run out of time?; and what if this isn't God's plan for us? People say I'm crazy to question either of these, because we're still so young, and God wants to make families. But, the truth is that neither of these things is reassuring, because they are the fears closest to my ever breaking heart. Each time treatment gets pushed further back, the doubts creep in and take over. I'm really scared. And, no amount of reassurance seems to change that. I'm scared of what will happen and more scared of what might not ever happen. I am leaving you today with a final thought from a song I heard recently. Today, this has been my heart's song:

"At the first glimpse of light I'll be looking for you, Lord. At the first glimpse of light I'll be looking for you, Lord. At the first glimpse of light I'll be looking for you, Lord. I'm in the belly of the whale. The first step I take I'll be headed the right way. The first step I take I'll be headed the right way. The first step I take I'll be headed the right way. I'm in the belly of a whale. The first song I'll sing I'll sing it to you, God. The first song I'll sing I'll sing it to you, God. The first song I'll sing I'll sing it to you, God. I'll sing Hallelujah. From the belly of a whale. Why do you love a hear that's not beating? I have a heart that's not beating. But I was born for Hallelujah. I'm in the belly of a whale." - In the Belly of the Whale by Scott Orr

Being My Own Fertility Advocate

All the books I have read say the same thing: be your own advocate by educating and involving yourself fully in the process of infertility treatment. As a librarian, it is in my nature to research ad nauseum, so I never doubted that I would read nearly everything I could find on the topics of PCOS and infertility, particularly if there was information that included both topics. The first two books I read were completely about infertility treatments, because that was what was available in the library where I work. They were great books that actually got me excited for the process. I was nervous about how to approach the subject with friends, family, or even colleagues, but these books had some great suggestions. Furthermore, both books were really encouraging when it came to possible treatments for women with PCOS. I learned that NO treatment was off the table! That was the greatest news, because our first infertility doc (the idiot I mentioned in my previous post) limited our options to using Clomid and, when that failed, which he was certain it would, we would need to try in vitro fertilization (IVF), a very expensive and invasive process. I was so ecstatic that these books were proving a doctor I already didn’t trust dead wrong. I would stop reading at points to tell my husband about the “latest treatments”, or about how there are even some holistic approaches, such as acupuncture, that I never even thought of.

I continue to be amazed by how far technology has progressed. My husband and I were able to have talks about what we felt would be the stopping point, as in “how far is too far”. We have different ideas on this point. My husband is a science guy with scientist parents. He believes that technology can never push the envelope too far. That the more we learn and evolve as a people is further proof that God allows us to grow and evolve. I believe that when we create life, even if it is in a Petri dish, then it is life, and shouldn’t be discarded. Although this creates another moral dilemma, because what if you are one of the lucky ones to have five great eggs, but you don’t want five children. Do you donate your eggs to other families? Leave them frozen just in case? It’s a lot to think about. I know there are many Christian organizations that do not support IVF for this very reason. It’s a moot point currently, because we haven’t even started the most basic of treatments, but it isn’t something my husband and I have ignored, and it is all part of the process of being your own advocate. Incidentally, we have found a good compromising point that we both feel comfortable with.

When it comes to educating yourself, just like any other facet of life, there have to be some boundaries, which is something I learned first hand this week. In my first post I referenced a book by Dr. Vliet called PCOS:. I have officially stopped reading this book, because it crosses the line from informative to downright scary. I did not realize how deadly the effects of PCOS can be, and I suppose knowing that I am at a greater risk for stroke, heart attacks, and diabetes is necessary, but it really just plain freaked me out. The book not only scared the crap out of me, it did little to console the trauma it was inflicting. Dr. Vliet didn’t provide the comfort I found in other books, because that wasn’t her goal. Her book was not about fighting infertility or being your best fertility advocate; it was about what it means to be a woman with PCOS. I realize that someday I will need to fully come to terms with ALL aspects of PCOS, not just the ones concerning infertility, but today is not that day. To be the best advocate for my health, I had to put aside some of the information that added unnecessary stress, and live for today. Incidentally, I cleansed my mind with a mind-numbing teen love story, and just started a new PCOS book that focuses specifically on infertility. In the introduction alone, I was already reassured with this statistic: 70% of women with PCOS can conceive naturally once their hormones are balanced (another tack in the win column for Dr. Smith and his treatment regiment), and 90% of women who cannot conceive naturally can conceive with fertility treatments (Harris, 2004). On a side note, this means my husband was right about both of these books. He told me not to get the one by Dr. Vliet, but I insisted it would also be helpful. I hate it when he’s right :)!

I wanted to end by sharing with you what my officemate said to me as I was telling her about the big, bad, scary book: “If you want to know your future, open the Bible and read about God’s love. That is your future, April. Not just what you read in that book.” How right she was!

Love to all- April

Favorite I have read so far:

Schoolcraft, William (2010). If at first your don’t conceive. New York: McMillan.

Book reading now:

Harris, Collette and Theresa Cheung (2004). PCOS and your infertility. Carlsbad, California:

Hay House.

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.