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

 

Author: Jen

I am the wife of an insanely hot husband and the momma of three precious and exhausting kiddos. I have been given way more than I could ever deserve and I really love naps.

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