Polycystic Ovarian Syndrome
Prenatal and postnatal complications are not as rare as we'd like to believe, even in the United States. This month, Band Back Together is bringing this to light in our spotlight series.
We invite you to share your stories of any type of complication before or after the birth of your child. Whether it's preeclampsia, a cord trauma or an infection like Group B Strep, we want your stories.
Have you experienced complications during pregnancy or immediately after?
You want prenatal and postnatal complications?
I've had them in spades. My son just turned a year old, and I can't stop thinking about what happened after his birth every single day.
After having a miscarriage in 2008, another in 2009, and a third in 2010, I was desperate to have a pregnancy.
I have PCOS and hypothyroidism, and my doctors had told me that if I wanted to carry my own child, I needed to do it ASAP.
I couldn't get affordable health insurance due to my pre-existing conditions. The policies I could get didn't cover infertility treatments anyway. So I hit blogland to see what real doctors prescribed for women I thought were similar to me.
I found that some women had luck trying to conceive while on Clomid. I gave it a try, but after several cycles and too many stark white peesticks to count, I decided it wasn't working.
One day I woke up feeling worse, worse than I'd felt since the miscarriages - crampy, achy, downright vomity - and I knew I had to test just one more time. It was positive!
The next day, I was admitted to the hospital for the pain due to a suspected ectopic pregnancy. I spent the next three days there until an intrauterine sac showed up on ultrasound.
Guess what also showed up on the ultrasound? My right kidney, very inconveniently nestled up to my uterus.
Hyperemesis hit immediately, as it had with the other pregnancies. It sucked, but at least there was a constant reminder that lucky number 4 was still hanging in there. I was given an anti-emetic and remained on it for the remainder of the pregnancy.
It made things so much better. Even on the medication, I weighed 45 pounds less after delivery than I did before I got pregnant. (I've never been so happy to be fluffy in all my life. Imagine if you didn't have those 45 pounds to spare!)
At eight weeks, I started seeing spots. My blood pressure had started to rise, and a 24-hour urine protein sample showed I was already emitting large amounts of protein in my urine. The blood pressure medications made me incredibly dizzy. For the rest of the pregnancy, I couldn't stand up for longer than 15 minutes without feeling as though I might pass out.
At twelve weeks, my husband and I thought we were in the clear.
Suck it, first trimester!
I went to the bathroom one night at work, feeling slightly crampy. I found that I was bleeding and had passed a large clot. I rushed to the hospital, all the while thinking, "We shouldn't have bought the crib. We tempted fate and now it's all over. I'm sorry, baby."
It turned out that I'd had a small fibroid that grew larger from the pregnancy hormones, too large for its own blood supply. It was dying from the inside, hence the blood and pain. I went on the first of several stints of modified bed rest.
At 18 weeks, the bleeding from the fibroid finally stopped and I was released from activity restrictions. I promptly got food poisoning and ended up dehydrated and in preterm labor. Cue modified bed rest, part two, which ended at 22 weeks.
My blood pressure had risen to dangerous levels at 23 weeks. I was already maxed out on the amount of blood pressure medication I could take. I was also emitting even more protein in my urine. Enter modified bed rest, part three. On the ultrasounds, it showed that baby was getting smaller and smaller for gestational age.
I tested positive for gestational diabetes at 24 weeks. That, combined with the other complications, ruled me out of all care options in my hometown.
We're in a rural community, and a maternal-fetal-medicine team flies in once a month to do level two ultrasounds. They took on my care, seeing me when they were in town. I drove 220 miles one way to see them for the rest of my appointments. I caught bronchitis in their office and broke a rib coughing. Unpleasant at the best of times, downright intolerable when there's also a baby kicking you those ribs.
At 26 weeks, my blood pressure spiked some more. I was seeing spots in my vision all of the time. I had a constant severe headache. I was having epigastric pain, but I thought it was just heartburn from throwing up all the time and wondered why antacids weren't working. Due to miscommunication between my care providers, this went unnoticed until 28 weeks.
At the 28 week appointment, I was put on full bed rest after an abnormal EKG and some bad cardiac laboratory testing. It was only then that the maternal-fetal-medicine team realized that they'd never done a urine protein check on me. It came in high of course, but nobody could decide if that was because of my crappy pelvic kidney (that had been emitting protein for the entire pregnancy and was now getting damaged further by constant baby headbutts) or if it was the beginning of preeclampsia.
We monitored it for several weeks. The levels rose slowly, as did my blood pressure, and they decided to keep me home on bed rest with a blood pressure monitor. They would induce labor as soon as the baby's lungs were ready.
At 37 weeks, his lungs were ready, which was good because labs showed I was in the early stages of heart, liver, and kidney failure. He was deemed fully cooked. He thought differently and refused to make his appearance.
After 84 hours of labor (GBS+, 37 hours since my water broke), I had a c-section. I had a bad reaction to the spinal on the operating table. Our son's heart rate hit 30 and mine hit 16. I thanked them for the blessed pain relief. Labor sucks for most (if not all) people, but I didn't know it would also make me flashback to the sexual abuse I suffered as a child.
I never thought I'd really have a baby at the end of it all. Not until I saw him alive and screaming. I thought that was the end of the nightmare called reproduction. But after two hours in the recovery room, his blood sugar was a little low, so they took him for monitoring.
Eight hours later, when I could stand and walk again, they let us have our son back to feed him. We thought he was just sleepy when he didn't want to eat.
His blood sugar had tanked after they forgot to check it during those eight hours, and he was lapsing in and out of a coma. He was rushed to the NICU for IV dextrose.
He was also jaundiced from ABO Incompatibility and had to be on phototherapy. He stayed in the NICU for the next five days.
He's a determined, stubborn little fighter to this day, and we are so lucky that he made it unscathed through all of the complications.
Mama, on the other hand, still can't process the enormity of all of it - more than a year later.
But on the bright side, the PTSD symptoms from the pregnancy, birth, and postpartum period have almost completely eclipsed the symptoms I had from other life events.
Yes, glitter, dammit!
So many of us struggle with infertility, yet we do so in the shadows.
The unspoken struggles of eerily white negative pregnancy tests. The heartbreak of another month gone; our wombs longing for children.
Something so natural, something so normal, something we cannot do. It divides us from the rest of the world.
This month, The Band, we're inviting all of you who have struggled with infertility and miscarriage to bring your stories to the light.
It's time to shine the spotlight on infertility and destroy the shadows we live in.
Please join us on Sunday, June 24 for a carnival of posts about infertility and loss.
Dealing with infertility is like dealing with grief. No two days are the same. The pain ebbs and flows. Just when you think you’ve got everything under control, something triggers a thought; a memory.
There’s denial, of course. Sometimes denial masquerades as hope. After three years of trying to get pregnant I know all the signs of an impending period. I’m like a fortune teller, reading my future in signs and symptoms instead of tea leaves.
And though I’ve become an expert at reading the signs, every month I try and deny them. My face is breaking out? Must be that new soap I’m trying. Are my breasts sore? No. I’m just imagining things. Is that mood swing due to PMS? No, it must be just stress.
All those signs are harbingers, they all tell me that my body has betrayed me. Again. No baby. Not this time.
Anger. It takes many forms: irritation, frustration, envy. I rage against the lack of control that I have. My anger takes the form of questions most of the time, questions without answers:
Why did I get saddled with Polycystic Ovarian Syndrome?
Why didn’t anyone diagnose it sooner?
Why aren’t my treatments working?
It’s not fair, it’s not fair!
Why do my cousins, my sister-in-law, get to have children without even trying, children they didn’t even want?
Did I do something do deserve this?
My anger wells up about silly things, too. All those bullshit TV shows and movies that use pregnancy as a plot point. They are such bullshit. Two characters sleep together once on TV and it practically guarantees a pregnancy. Sometimes I yell at the screen: “It doesn’t work like that!” But it doesn’t help. I know that it does happen that way sometimes. Just not for us. Not for me.
And then there’s depression. My old familiar friend, back to visit. It takes advantage of mental defenses lowered by the stress of infertility and makes itself at home again. Convinces me that I’m broken in both mind and body.
“This will never get better. Why even bother with all the pills and the shots and the doctors? Just give up. Giving up is so much easier.”
Depression lies, but the lies are so easy to believe.
The deep sadness, the aching sadness of infertility strikes without warning. A glance at the invitation to my nephew’s birthday party. An adorable baby in the supermarket. Someone else on Facebook announces a pregnancy.
I feel that sharp spike of pain in my chest. The constricting sensation of grief, that familiar ache in my throat. The pool of darkness in my soul threatens to overtake me.
Depending on where I am, I may give in to it. If I’m at home, or alone in the car, I let the tears stream down my cheeks and the sobs escape from my mouth.
If I’m in public though, in my cubicle or at a baby shower or the grocery store, I stamp it down, crush it tightly, bury it deep inside. I shake my head, fake a smile, and force myself to think about something else. Anything else. It works for a while, but it’s exhausting. It feels like lying.
I’m not quite at the acceptance stage yet, although I’ve come close. Sometimes, I’m able to take a deep breath and consider the other what-ifs: if this doesn’t happen; if it never happens: then what?
Can I be happy with just my husband and a dog? Maybe. Would we be happy becoming parents through adoption? Maybe. If it takes five more years, wouldn’t it be worth it? Definitely.
I struggle with keeping my focus on the present and the future. There is no point belaboring the mistakes and missteps of the past. I never asked to go on this journey. I don’t want to be dealing with infertility.
But here I am - I’m on this road now. It’s okay to yell and scream and cry. But if I want to overcome it, I have to keep moving forward.
Sometimes, we at The Band know that part of owning who you are is admitting it to the world.
It's one reason why we at The Band work tirelessly to break down stigmas and find the ties that connect us all, the ties that remind us that we are none of us alone.
Please join us in standing tall and proud as we tell the world who we are.
What are you, The Band, The Face Of?
I've always wanted to be a mother, although I never associated being a mother with marriage, even though my parents had a good marriage (still do).
When I was married at twenty-six, I tried to get pregnant. I was pretty good, at least for me - I stopped smoking for the sixth time, lost weight, cut down on the beer.
Later, I got lots of blood tests and found out I had hypothyroidism and Polycystic Ovary Syndrome (PCOS). I tried various fertility drugs.
Four years later, I got pregnant for the first time. It lasted seven weeks; probably the longest time I've ever been pregnant. Finding myself bleeding more than I ever had before was a huge shock. Huge. I don't remember a lot of that time, for pretty obvious reasons.
When we moved, we moved to a state where insurance was required to pay for at least part of IVF. The doctor that we wound up seeing looked at me and said that at thirty-six, I was "too old to do anything else other than IVF." But he would "see what he could do with a couple rounds of ovulatory stimulants."
What he could do.
That still pisses me off. I wound up with an ectopic pregnancy and went through one of the most physically agonizing nights I'd ever had.
My third miscarriage happened after I became an adoptive parent. I can't even remember how many years it's been now - our daughter was old enough to ask what was wrong, but she was too young to talk to about it. I was five weeks late and had a positive pregnancy test. I wanted to sit down and scream for days. But I had responsibilities, so I put on my happy face and sucked it up.
These miscarriages have changed me.
I've never been what most people would call "normal," and now it's been proven to me - three times over. Not a real woman. Certainly, not fit to be a mother. Of course, even with a child, well - I can't go there right now.
I am the face of miscarriage and infertility.
It has changed me.
We'd been gearing up for the upcoming college football season all summer long. I even started a Pinterest board for ideas on decorations and food. You see, we watched nearly every game last year, but this year was going to be different. I didn’t realize how different it would be, though.
The year before, we'd had custody of my then four-year old niece. She'd since gone back to live with her mother at the request of the judge at our final court hearing a few months before. I knew it was going to be very hard for me to get in the garnet and gold mood without our little cheerleader, but I was going to try my best.
I bought a table cloth that looked like a football field, a chip and dip tray in the shape of a football, and we had various garnet and gold items strewn about the table of food. This was only the second game of the season, but I was going to try to get in the mood.
Around Half Time, I started to get a few abdominal cramps. When I went to the bathroom, I thought my period had begun. As the time went on, I decided to go lay down because the pain was pretty intense.
The next morning, despite the pain, I went to church. The bleeding and pain progressed throughout the day. I had big plans of studying, but by the afternoon I had to lay down. When I woke up in the wee hours of Monday morning, I was soaked in blood.
After soaking two tampons in an hour, I called the nurse to find out if I should go to the ER. With the pain and the bleeding, she suggested strongly that I head straight over.
I peed in a cup, had two pelvic exams, and was sent home with pain medication and orders for bed-rest for two days. The doctor wanted to give me strong pain medication, but I requested something lighter, so I'd be a little less groggy. Pain medications scare me.
By coincidence I had an appointment at a new doctor's office for that afternoon already scheduled - just to establish me as a new patient. After I filled my script for the pain medication, I took a nap before my girlfriend came to take me to my appointment. I was still in a fair amount of pain, but the pain got really bad once we got back home.
A little bit later, I took some acetaminophen with codeine for the pain. I kept waiting. Waiting for the medicine to kick in. It was an excruciating wait. It wasn’t doing ANYTHING to touch the pain.
Finally, I'd enough. I headed back to the ER, crying the whole way. I told the lady at the ER that the bleeding hadn’t got any better and the pain was now unbearable. The clots were scaring me, too. I also remembered they'd mentioned doing a pelvic exam that morning, but I never got one. I brought it up to the nurse taking my vitals.
A few minutes later, in waltzed this short nurse. She started YELLING at me, telling me I need to get on birth control for my PCOS and to STOP coming to the ER!
What. The. Fuck?
I was in tears from pain. I am not a drug-seeker. This pain was NOT PCOS-related. I've never in my life felt this much pain, nor had I EVER had this much bleeding and clots. This was NOT normal!
The whole time the nurse was asking questions, the doctor was yelling at me, I could barely talk through the waves of pain. The pain would start, become really intense, and then go back down. It was doing it constantly. They finally slipped something in my IV which meant I was barely able to stay awake...but I wasn’t in the intense pain any more. They did another pelvic exam, and sent me on my way with a prescription for stronger pain medication and birth control. I spent the next day managing my pain, watching the bleeding, and sleeping.
At my new clinic, you can only make next-day appointments. The doctor didn’t see patients on Wednesdays, so I had to wait until Wednesday morning to call for a Thursday morning appointment.
After lots of rest, I tried to go to school Wednesday morning, knowing I had an appointment the next day with the doctor. I was still bleeding, but that morning, the pain was bearable. By the second hour of classes, I was really hurting again. I didn't want to miss class, so I held it together until after class. Once the teacher let us out, I made a beeline to the bathroom.
I knew something wasn’t right before I got into the stall. As soon as I pulled my pants down, there was blood everywhere. (Thank goodness for black pants!)
After I cleaned myself (and the toilet) up, I stood up, turned around, and saw a sac the size of the palm of my hand in the toilet. Before I could do anything, the automatic toilet flushed. There it went.
I was having a miscarriage. There was no doubt in my mind.
I left school, called my mom, my doctor, and texted a friend. I could barely keep it together long enough to get home. The doctor told me there was nothing she could do and to keep an eye on the bleeding and pain until tomorrow's appointment.
The next day, she confirmed my suspicions, my fears. There was nothing else to do. I remained on bed-rest for a a few more days and slowly began to ween myself off of the pain medication in time for the emotional pain to start coming to the surface.
In six months, two of my dreams had been crushed.
In February, I had to relinquish custody of my niece to her mother, and in September, I found myself having a miscarriage before I even knew I was pregnant after trying to conceive for over seven years.
It's now April, and I'm about to hit 14 months since the final court hearing and 7 months since the miscarriage.
The pain is so raw some days I can’t get out of bed. I struggle to focus at school. I question God. I question myself. I have moments of weakness when I yell at my spouse about losing both of our babies. I want them back, I want them safe. We should be celebrating my graduation from the community college, my niece's graduation from kindergarten, and we should be expecting a baby some time in the next month.
But we’re not.
It was over before it even really began.
It's estimated that between 5-10% of the female population is affected in some way by Polycystic Ovarian Syndrome.
This is her infertility story.
I'm a lesbian. Ordinarily that isn't super-important, but I'm at the point that I want kids, so it becomes very important.
Once people find out that I'm gay and want kids, I get asked, "So you're planning to adopt, right?" There seems to be a socially-held expectation that being gay means you must adopt. Once, someone told me that adopting was "my social responsibility."
However, my response is always, no, I want to carry my child. I want to experience pregnancy, with all its ups and downs. I want to feel my child grow. It's my experience, and no one should try and take that away.
While I was never big into kids, I've dreamed about being pregnant since I was a teenager. I always vaguely knew it was something I had to do at some point.
Then, about two years ago, suddenly a switch flipped and it was all I could think about. I started reading about it, talking about it, doing everything I could to get near it.
And one day, my partner and I decided to start trying.
My partner and I have tried to get pregnant for a year and a half. We tried to get her pregnant because her cycle was regular. Since I cycled irregularly, and we didn't know what it would take to get me regular enough to become pregnant, it seemed the easy choice. We started tracking her cycle, found a donor, went through a contractual process that took months, and finally started trying.
Every month we'd try, watch her symptoms, get excited, take the test... and it would be negative. Twice we got hopeful. But eighteen months and two miscarriages later, we're back at square one.
During those eighteen months, I ran through every emotion imaginable. The worst of which was the jealousy; jealousy that I wasn't able to carry our child. I consoled myself by saying I'd carry number two. However, by the end, we both felt defeated, deflated, and devastated. I also felt a fierce determination; a determination that I wanted this so badly, I'd do anything I needed to do.
After 18 months of failure to get pregnant, I decided to see an endocrinologist. I've always had a really irregular cycle, so I knew something was wrong. However, it took me a long time to be ready to face the possibilities of what that might mean.
After meeting with the endocrinologist, I was diagnosed with Polycystic Ovarian Syndrome, or PCOS. PCOS has major fertility implications - PCOS means that I don't ovulate. No ovulation = no baby.
I've started a treatment regime including medication and weight loss, that so far has been unsuccessful in booting my system - no easy task. Next month I start an ovulation drug that will allow me to ovulate regularly.
All of a sudden, this got very, very real. My coping strategy involves researching the hell out of my options. I've been sensitive to my options for a while, because, by now, we're up $2,000 in to plane tickets, doctor visits, and everything associated with a bootleg-approach to getting pregnant.
We tried working directly with our donor. We had him tested for fertility. We got ourselves prepped. It costs a lot of money. Starting our adventure with the endo and getting my cycle regulated meant we had to consider some options.
My options are to start fertility drugs.
Once I do this, I can try either a home insemination, or an Interuterine Insemination, or IUI. This whole TTC thing gets complicated, overwhelming and expensive really quickly. My understanding is that IUI, in which a tube is placed in my uterus to flush sperm in to the area as I ovulate, is my best option.
Of course I know how baby-making works, but damn.
I hate that it has to be so clinical. I hate that there is always someone else in my bedroom. I hate that this can't just be mine. I hate that I can't be surprise. I hate that we will pay an $800 price tag for an 18% chance of success. It's just not fair.
Despite all of this, I'm optimistic. Still looking forward to the future. I know it will happen, and I can't wait until it does.
As long as there is that tiny pinprick of light, I'll keep the sputtering flame of hope alive.
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