PCOS – To Hell and Back

Heads up – this post will contain some TMI-ish mention of lady parts. Dudes don’t really read blogs, anyway – at least not ones I write – but just to be on the safe side, you’ve been warned.

As many of you probably know, I have Polycystic Ovarian Syndrome, PCOS for short. It is characterized by, among a few other things, polycystic ovaries. Every month, when our awesome bodies are gearing up to ovulate (release an egg for possible fertilization), several eggs, called follicles, are called up to the front lines. In a normal woman’s reproductive system, one follicle volunteers as tribute, and the others go back about their business. There, the “dominant follicle” (potential baby) grows and grows and then, when the time is right, releases an egg, resulting in ovulation. In a woman with PCOS, those homies who came up to the front never go back to where they came from, and end up hanging out all over the ovaries, some growing and growing. The “dominant follicle”, rather than releasing an egg, just hangs out, either growing or not making babies, making it very difficult for women with PCOS to conceive. Occasionally, maybe once a year, maybe a few times in a lifetime, these follicles will rupture, causing extreme amounts of pain. I’m sure you all either know someone who has experienced an ovarian cyst rupture or had one yourself. Almost every gal who has been so fortunate as to experience this has ended up in the emergency room for treatment. It hurts that bad. (Don’t worry if you’ve had it happen, ovarian cysts do NOT equal PCOS!)

Why the biology lesson, you ask? Because I need you to understand the situation I’ve been in. I had my first ovarian cyst rupture at the age of 11. After a night in the hospital and a very scary ultrasound, it was determined that the pain I was experiencing was a cyst the size of an orange bursting. An orange. That was the beginning of my PCOS journey.
I have now dealt with this awful disease for 18 years. That’s a literal lifetime. As I got older, it got worse. Every year. Then I had kids, and it got more worse. But wait, Jen. Didn’t you say that women with PCOS often struggle with infertility? Way to pay attention! You see, I have suffered, through the years, in agony, with extreme, atypical, and uncontrollable PCOS. A normal woman ovulates once a month. A woman with PCOS ovulates a handful of times a year, if that. I, for some unknown reason, was ovulating EVERY 8 DAYS. It used to be two weeks, then got worse. Then it was 10 days, but it got worse. And it finally leveled off that every 8 days, I was having a cyst rupture. Every 8 days, I was in agony for part of my day, in the type of pain that sends women to the emergency room. EVERY. EIGHT. DAYS. Because I was such a determined ovulater, a few follicles had the chance to break through, resulting in my gorgeous babies (whom I was told I would never be able to conceive without medical intervention). So while there’s THAT silver lining, every 8 days I was writhing in pain.
I saw, I think, 7 doctors last year, trying to find answers, help, RELIEF. Each time I’d leave disappointed or insulted. I’d go through testing with one doctor, just to be told I had PCOS and handed a prescription for birth control, the standard treatment. It didn’t help. I saw another doctor, went through the same invasive tests, just to be told I had PCOS and handed a prescription for birth control. Which didn’t help. I’d pick myself up off the floor, rally my spirits, and get the guts to try AGAIN. More invasive tests. More of the same results. More birth control. Every. Single. Time. Depressed doesn’t begin to describe me. Each time I had to explain, through tears, the awful symptoms. Each time I had to beg and plead for them to see my weight as a symptom, not a cause. Few listened. Some symptoms are too embarassing to tell the interwebz about, but you’re welcome to Google PCOS symptoms and imagine my life. Extreme fatigue, mental fog and confusion, acne, and the worst: incredible, soul-crushing weight gain. Once “my hormones came back”, we’ll call it, after I had my daughter, I gained 50 pounds in a single month. I could literally feel myself getting fatter and nothing could stop it. With being overweight comes a whole host of health problems, which God has thankfully spared me from. But it also comes with stares and assumptions and judgements and shame. I don’t look this way because I ate my way into Lane Bryant. I don’t look this way because I drink 2-liters of Pepsi a day, as one doctor suggested. I look this way because my flawed, human body is incapable of making the correct amount of hormones, and I was trying so very desperately to get someone to help me fix it. Doctor after doctor, disappointment after disappointment, suffering in silence and trying to explain why a hysterectomy wouldn’t fix it. The last doctor I saw I thought would surely be The One. She was very nice, more sympathetic than the others, and immediately got me scheduled for a morning of various surgical procedures. Friends, cannot express the depth of my absolute despair when I awoke from surgery to discover that nothing had been discovered, nothing had been removed, nothing would be different. I cried tears of absolute grief in the recovery room. I had incisions and no hope. The surgeon and my doctor hadn’t communicated well, it seemed, and only half of the procedures had been done. Only half of my uterus was explored. But the entirety of my heart was just shattered. Give me a moment to gather myself, I can’t see through the tears well enough to type.
It was hard. I kept trying and trying and trying, and no one was able to help. Rather than find out WHY my body was going rogue, they just handed me the cookie-cutter solution, no matter how many times I screamed that it wasn’t helping. I was in pain. Miserable. Fat. Something was wrong and there appeared to be no way to fix it, ever. Could I really live the rest of my life like this? I couldn’t let myself imagine another lifetime like the one I’d already experienced. So I just resigned myself, for the time being, to be a good little patient. I took my pills, I grew my cysts, I gained weight, and I lived in suffering. I prayed. Oh, how I prayed. Deep depression threatened to overwhelm me, creeping behind me like a shadow, ready to pounce. Like the pain, it was ever-present. Between the fatigue and my self-worth plummeting, I had no motivation. No joy. I knew God healed others, but for whatever reason, it did not appear to be His will for me. PCOS was, quite efficiently, ruining my life. I sought counsel in PCOS-specific forums, only to be shunned because I had been spared the pain of infertility. I was so alone, so sad, so ashamed, so hopeless. My birth control prescription ran out, and I had nothing left inside me to seek another one. Then it got a little worse.
You see, one of the symptoms of PCOS is elevated testosterone. Every woman produces a tiny amount of it, but some women with PCOS produce way too much. I, of course, am one of those lucky ladies. You can imagine the toll it takes on a woman’s womanhood to know that her ovaries are treating her like a man. Testosterone is believed to be the cause of the follicles that hang around and turn into cysts. It also causes acne, in grown stinkin’ women who have been out of high school for 11 years. (Just for future reference, asking someone about the rash on their face probably isn’t the best way to make them feel awesome.) It does other, more embarassing things, but it had one final blow to deal me: Hair loss. Male pattern baldness, to be exact. If you know me, you know of my hair. I’m not cocky, but I can admit that it is my crowning glory. It’s the one part of me that cannot get fatter, can’t get stretch marks. If I were ever to model, it would be for hair. I have lots of it, and I complain about the work, but the truth is that I couldn’t rid myself of the last-remaining quality I had to be proud of.
I started noticing TONS of hair coming out in my brushes, in the shower. I asked my hairdresser if she noticed a difference, but I have so much stinkin’ hair that she didn’t notice. But I did. I saw the handfuls coming out. I noticed when I started being able to wrap the elastic around a ponytail more times than ever before. Then I looked up and saw it: thinning hair, just like a dude. I was starting to look like Stabler on SVU, and feared I’d soon look like Cragen. I know, I know, there are worse things. I have a beautiful friend who has zero hairs. But to a photographer, who spends so much time surrounded by beauty, it cuts deep to not be proud of your appearance. As a woman, male-pattern baldness deals a heavy blow. I’d had enough. I couldn’t take it. I couldn’t be fat, pimply, tired, dumb AND bald. So I took to Google, where I earned my Google University medical degree.
Deep in the pages of a hippie healing site, I found a glimmer of hope. Well, not really hope, because I was so devoid of it at that point, but more of an it-couldn’t-hurt glimmer. Saw Palmetto. An herb used by men to lower testosterone, usually when fighting prostate issues. It made sense – if excess testosterone is causing all these problems, take a medication that blocks or lowers testosterone. DER. So I took my hiney to our local hippie store and bought the small bottle, just to try, and asked my Facebook friends to pray for me. A little over a week later, I was sitting on the couch, marveling at my baby’s-bottom-smooth cheeks. Maybe not THAT smooth, but smoother than my face has felt in about 15 years. If it helped nothing else, it helped with breakouts, so I ordered a big bottle and kept taking it. I had been taking it about a month (too soon to notice any difference with my hair) when I commented to a friend that I hadn’t had a cyst rupture in weeks. Weeks! Like clockwork, because that’s just how my body rolls, I felt it. The stabbing, burning, rumbling that starts when a cyst is rupturing. Only this one didn’t stop. It hurt. BAD. As bad as my unmedicated c-section. It hurt from my knees to my lungs, felt like my trunk was melting, and the only way to know that I could still breathe was to scream. I don’t know who was more scared: myself, lying on the bathroom floor, writhing and jerking and vomiting from pain, trying not to black out, or my poor kids, confused and unable to help. My amazing husband rushed home and took care of me, and I survived. Obviously. It was the worst rupture I’d ever experienced, and the pain never fully went away, so two days later I went to the emergency room to make sure I hadn’t experienced ovarian torsion (Google it) or something worse. A sonogram and a CT scan later, I got the greatest news I’ve received in a long, long time. While the ultrasound showed fluid from a ruptured cyst the size of a cantaloupe (OUCH), it showed ONE cyst. ONE. One single, solitary follicle. But Jen, you still have a cyst there! Yes, you’re right. And it’s a fairly large one. But 7 months ago, my most recent sonogram before that, my two ovaries were hosting more than 75 cysts. You’re reading that right. My left ovary had 31 and she stopped counting at 46 on my right. This was WHILE on birth control, the standard treatment for PCOS. I teared up with joy, felt light with hope, and just about hugged the doctor. One cyst. Just one. Years and years of trying to find help, trying to find an answer, years and years of disappointment and depression and pain… and only one cyst. 18 years of having “devastated ovaries” (doctor’s words). Only one cyst. Am I still fat? Yep. Do I still have a lot to fix and figure out and tweak? Yep. But now I finally, FINALLY have something I hadn’t dared to attempt again: hope. I know that there is something that can help me. I know that my body WILL respond to SOMETHING.
Please note that I am not a medical professional and hold no formal training in any type of healing, other than prayer. I am not one to be a conspiracy theorist who accuses pharmaceutical companies of creating customers more than assisting patients. But why hadn’t this herb been mentioned before? Go ahead and Google “saw palmetto for PCOS”, you’ll find tons of information, testimonials, and recommendations. Why had no single doctor mentioned it to me? Why did they sit in their offices and stoicly watch me sob, plead, beg for help, then only offer me synthetic hormones that they knew would not make a difference? Each different prescription I tried came with pages of warnings, side effects, interactions, and more. Each pill I took caused an unfavorable reaction in one way or another, and none of them offered any respite. Pain and pills, that was my life. But this natural herb, to which no one holds a patent, has done more for me in a month than nearly two decades of labratory medicine. Don’t get me wrong, I’m grateful to modern medicine. Without it I wouldn’t know that I had too much testosterone, wouldn’t have Benadryl or sonograms or scientific proof that what I’m doing is working. But I am ever so grateful to God for giving us natural, working medicine. I am grateful to Him for wisdom, for access to healthcare. Did I mention that I only have ONE CYST?!
I’m sitting here, still in pain from the massive cyst that just exploded inside me recently, trying not to be vain about the fact that I’m fat enough for something the size of a cantaloupe to fit inside my stomach, but I have hope. Not just hope, but excitement. I am going to continue my current dosage and begin more natural options to heal the rest of me that needs fixing. With God and His intentionally-created nature, I believe that I can find relief, can find a life that I live happily, without chronic pain. I sit here hopeful, happy, in the process of healing. It’s said that the follicles on polycystic ovaries look like strands of pearls. But today, friends, these are the only pearls I have on.

pearls

 

Planting Time

“It’s just a season.”
I hate this phrase. I hate it because it’s usually accompanying a really tough time, and the phrase, while meant to encourage the sufferer that their woes are temporary, often feels flippant, cliche, and dismissive of how horrible the trenches can be. Because in the middle of a season, it doesn’t feel like a season, it feels like forever.
But it’s true. Heck, it’s Biblical. “For everything there is a season, a time for every activity under heaven.” (Ecclesiastes 3:1, in case you’re wondering.) It’s scientific, too. Strawberries aren’t meant to grow in winter, snow isn’t meant to fall in summer. There are seasons for sowing, seasons for reaping. There are seasons for enjoying the spoils of a season spent working, and seasons for huddling and weathering the storms. Seasons where everything is in bloom and seasons where everything appears frozen and dead.
Seasons do not appeal to me, for the most part. I don’t like change. I like control, and I can’t persuade a season to stay, or to stay away. The beginning of every season is exciting, a new start, a change in perspective. Fall boots and Starbucks! Pedicures and ice cream trucks! CHRISTMAS!!! There’s always something to look forward to when a season changes. But then the allergies kick in, or isolation sets in. We’ve been cold and shut up inside with short, dark days or sweating for weeks during the never-ending summer days. Seasons always last just a little longer than we’d like them to. And with “seasonal” fruits and vegetables being grown and manipulated to be available year-round, indoor pools, and Peeps being sold during holidays other than Easter, the lines get blurred and we get bored. Quickly.
My season right now is one of planting. It’s a hard season. It requires lots and lots of work, time, attention, sacrifice, and sweat, with no indication of how the harvest will turn out, no taste of reward just yet. I have young children.
For a while I fought the season. We drug our children along with us and asked them to adapt to our schedules. We tried to plant during the wrong window. Since before we even began dating, I worked alongside my husband in ministry. If there was an event, I was there. If there was a girl in tears, I was ready. We stayed up late getting our calendars to look the same, dreaming up more ways to reach our students and spend time with them. I started wearing down, but there was no way I was going to admit I couldn’t do it all. I tried. Hard. I fought tired, hungry kids and schedules that were happy to eat me alive without a blink. I tried to be available to everyone, all the time. I scoured the internet for advice on being a ministry partner and a mother, I asked every pastor’s wife I knew, I cried, I begged, and I darn near collapsed every time I heard “It’s just a season.” I remember the disappointment, the near grief I felt when I thought I’d found a book that would give me the answers, only to discover upon reading it that nannies and babysitters were what made motherhood and ministry possible. I want to raise my children the way that God seems to think I can, the way He called me to. It was time to recognize that I couldn’t serve everyone else’s families while I served my own in such an important capacity. It was time to accept my season.
My calendar began to gradually look different from my husband’s. It’s still strange to me that there are new students who I don’t know, events that I don’t attend, sermon series that I don’t hear. Every now and then, someone will make a comment about my not being there, and it hurts, but I know I’ve made the right decision. I simply can’t do it all. And if I miss this season of planting with my children, I will not see the harvest in the next. God has called me to ministry, I just had no idea that ministry would be at home, and that three children could take up more energy than 100.
The best part about seasons, despite the fact that I can’t control them, rush them, or pick and choose what can be accomplished in them, is that they’re not permanent. We don’t live in the south pole. With babysitters not being an option, I can’t go to the movies right now. I can’t attend 99% of the things I’d like to. I can’t be by my husband’s side in ministry (although I’m learning that behind him in ministry is just as important). I have to turn down invitations and opportunities, friends and family. If a kid is sick, I stay up and stay home. It can often feel like a winter season, where nothing much changes, where I live in near isolation. But I am planting, planting, planting. Working the soil (complete with fertilizer, since one is still in diapers!). Learning how much water each one needs, giving each one the right amount of sun, nurturing growth, taking setbacks personally. I am a child gardener, throwing myself into the task of growing healthy, prosperous people. No matter how long this season lasts, it absolutely will not be forever, and will likely be over before I feel like I’ve had the chance to do my best.
Ministry or not, mother or not, we’re all in seasons. And we’re all in different seasons at different times. It can get really depressing really quickly to compare my sowing season to another’s reaping time. It can get really discouraging to try and live in a season other than my present one. Some days feel like they’ll never end, some days I even resent this season. But it won’t last. None of this life is permanent. Seasons come and go, seeds are planted and seeds grow. Harvest, winter, planting, growing… it’s all one big, ever-changing cycle that will continue whether we want it to or not. The sooner we (I) embrace our (my) season, the more effective we (I) can be in it. In the winter, we can rest and know that the sun is coming. In the harvest we can see the benefits of our hard work and understand how everything we did was so important. Dear friend, whether you are a parent, a single person, struggling or thriving, take heart and know this time will not last. There are plenty of other seasons ahead for you, and the change in season is not BECAUSE of you. The seasons change without regard for our feelings, but how often we allow the seasons to rule them. Embrace your season. Accept that it is only a season. Get the most out of your season. Know that each one prepares you for the next. Anticipate change even in the most monotonous of times. And if you don’t see me, it’s not because I didn’t want to be there. I just have a crop I’m tending to at home.

Reasonable Expectation of Dignity

I don’t want to share this.

My hands are shaking. My heartbeat is visible through the skin over my collarbone. I’m so nervous and humiliated that I feel lightheaded. I do not want to share this.

But I have to. For a week I’ve been fighting this, and for a week I’ve tossed and turned and been awakened by my brain that seems to want to write this on its own. So while I don’t want to share this, I need to.

I love fashion. I hang out in sweatpants and Backstreet Boys t-shirts and revel in the no-makeup days, but I love fashion. I also love to laugh. It seemed a given that I would enjoy a marriage of the two, Fashion Police on E!. I DVR’ed the heck out of it, I wanted Joan Rivers’ job (and wardrobe!), I laughed, I looked forward to it. Until a few months ago when I read an interview with a random celebrity that I can’t even remember, but their words stuck with me. She said that she did not watch Fashion Police, because it was hurtful. The women they tore apart on that show left their house feeling beautiful, and those “judges” thought it was their place to say otherwise. Boom. I haven’t watched since.

Many of you know that I struggle with my weight. Yes, I say “struggle”. I’m still battling the irrational anxiety that has popped up in the last year. I went from fat and happy to fat and terrified. Terrified of what people thought, terrified of what people saw. Leaving the house means winning an internal battle some days. As much as I love to encourage others, I cannot seem to rally myself to hold my head up as often. Yes, my husband loves me and tells me how beautiful he thinks I am. Yes, I am HEALTHY. No, I never share this struggle with my children. Because this weight is beyond my control, I feel like I am grasping at nothing, drowning, falling down a well. I want to wear a sign that says “Yes, I know I’m overweight, but NO, I did not do this to myself.” I feel like I need to explain myself to the perceived disgusted public. It’s a truly overwhelming feeling to not have control over your body. Enter the hot tears. I can take captive every thought and make it obedient to Christ (2 Corinthians 10:5). But the outside? The part that people see? All I can do is shave my legs, do my hair, and put on some makeup. Well, it’s winter, so the legs can wait. I have literally had panic attacks in the middle of stores because I was so ashamed of how I looked and what I thought people were thinking. Again, I know it’s irrational. But again, grasping at nothing.

Last week, my worst fear happened: I caught someone taking a cell phone picture of me. This is where my hands shake and my heart races again. This person was trying to go unnoticed, pretending to check emails or Facebook, until the flash accidentally went off. I was sitting alone, just a bare wall next to me. When I climbed far enough out of my shame cloud to tell my best friends and husband what had happened, they all tried their obligatory encouraging alternatives: “Maybe it was your beautiful hair! Maybe they liked something you were wearing! Maybe this, maybe that…” Nope. Momma was having a ROUGH day that day. Ponytail, my black flats with the holes in them, glasses. Also, we had been chatting, so a compliment could have been offered up at any time. I also know that this person is a member of a very trendy gym, one that prides itself so much on fitness that the various branches host competitions for members to prove themselves. I’m not calling this gym out, I’m just saying that given this person’s trained way of thinking with regard to fitness, and my appearance that day, it is not hard to conclude why that person took a sneaky picture of me.

I’m fat.

As a fat person, I’m allowed to say that. It’s not the worst thing someone can be, so I’m okay with saying it. It’s just a descriptor, it’s not my identity. But when that’s all someone bothers to notice about you, especially as a woman, it hurts. You can’t tell by the picture that person took that I love my family and friends, that I’m a beast with a glue gun, that I can quote every episode of Friends, that I’m freaking funny and flippin’ awesome. That picture doesn’t show my dedication, my creativity, my desire to help other people. It doesn’t show the rivers of tears I’ve cried over pants that stop fitting, the number of doctors I’ve met with to find a cure, or at least a STOP. It doesn’t show the fear I have when I approach a folding chair, an amusement park ride, or when I pass someone leaving a restaurant. It doesn’t show the internal battle being waged by my hormones, how my body is turning against me, how I have no control and no end in sight to this horrible, horrible disease. But you know what it does show, that image of my outsides? It shows the insides of the person who took it.   

As a photographer, I can assure you that this person was within their legal rights to take my picture. Once you attend a public event, you lose what is called a reasonable expectation of privacy. As a human, I want to shout that they had NO right. I am a mother, a wife, a friend… not a punchline. I may not meet that person’s standards of beauty, but then again, I’m not trying to. I can call that person rude, judgemental, callous, a butthead… I can say whatever I want, but it doesn’t take away the shame. Again, I wanted to scream, “I didn’t do this to myself!” I don’t owe that person an explanation, but I was so humiliated that I felt the need to justify my measurements. Instead, I just hung my head. My worst fear, that a stranger was internally laughing at my appearance, had just played out in front of me. Me, the strong-willed, opinionated, loud, energetic force of nature, had been reduced to a lump of indignity. My friends and husband also gave me the obligatory accolades, but the facts that I’m caring, sweet, thoughtful, funny, or made of concentrated awesomesauce don’t show up in sneaky, malicious cell phone pictures. It hurt. Bad. It still hurts. Writing this has helped some, given me a sense of control over how I will react to it. Like I said, it says as much about the person who took that photo as it does about the way I look. But beyond a personal victory, I needed to share this so to offer my perspective, the person on the other side, the person who is likely in someone’s newsfeed with a crude caption.

Please consider this side the next time you do the same. People of Walmart can be hilarious and mind-boggling, and you KNOW there are people who dress that way intentionally in the hopes of a POW appearance (or the $50 gift card), but what about the innocent ones? The people who don’t have any fashion sense, the people who say “Screw it, it’s Walmart and I need toilet paper!”, the people who don’t have the money for nice clothes, or even a home to hang them in? What about the people who don’t have the mental capacity to arrange a Milan-worthy look, the people you see wearing holey clothes, too-tight clothes, too-short clothes, too-dirty clothes, too-ugly clothes, too-old clothes… what if those are all the clothes they have? Can you imagine how they would feel to see their photo on a website devoted to judging peoples’ appearance, to read the comments of strangers about how they look, when no one knows their circumstances? I myself am guilty of taking a sneaky photo of a cashier who was dressed exactly like Blanche from Golden Girls. But now I ask myself, “Why?” Why did I need the picture? Why was it my place to secretly tease this woman? And what pain and embarrassment might she have felt, what insecurities might I have unearthed if she’d noticed? When did our desire to judge and tease become greater than someone else’s right to dignity? If I am fearfully and wonderfully made (Psalm 139:14), if I was knit together in my mother’s womb (Psalm 139:13), if I am God’s MASTERPIECE (Ephesians 2:10), then so are you, so is Blanche, so are we all. Taking pictures and laughing isn’t going to change that person’s life for the better. And it certainly won’t make you a better person. So please, stop.