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Navigating and healing from the aftermath of infertility.

Month 22: You Have Endometriosis

“Tell me about your periods.”

I’m at my first appointment with a reproductive endocrinologist. “They’re heavy, I have spotting for a week before, a week after and sometimes mid-cycle. My cramps and lower back pain are so bad during my period it’s debilitating.” I’ve told this same thing to dozens of doctors over the past 20 years but they all seem unconcerned and uninterested.

“It sounds like you have endometriosis.”

Wait, what? This is new. Endometriosis had come up as a potential diagnosis every time I Googled my symptoms over the years but I always assumed there was no way I could have it. It sounded serious and I was sure a doctor would have told me by now if it was a possibility.

Five minutes later, the doctor is inserting the ultrasound wand into me, checking my uterus and ovaries. “Yep” she said, “see these brown spots that look like chocolate chips in your ovaries? These are cysts filled with old blood. You definitely have endometriosis. You’ve got less than a 1% chance of getting pregnant on your own, but 60% with IVF.” She is cold and austere as she relates this life-changing information. Come on, you could at least fake compassion.

I spend the night crying and Googling endometriosis. Terrified and trying to process that I now not only have a reason for my infertility but also the debilitating pain I’d lived with for decades that was always dismissed by doctors. I was at a new crossroads: pursue IVF or find the best treatment for my endometriosis.

Month 29: Surgery #2

It’s twelve days before Christmas and I’m lying in my mom’s guest bed. I’m in my hometown, over 2,000 miles from my own bed. Six small incisions litter my stomach. The one beneath my belly button has a small tube running from my pelvic cavity to a small plastic ball housed in a tiny little bag slung over my shoulder. I’m grateful for this little tube because it’s delivering liquid pain medication directly into my body where the surgeon has cut into organs and tissue.

I’ve spent the last seven months reading medical journals, books, blogs, posts in Facebook groups, and anything else I can find to learn everything I can about endometriosis, treatment options and how they affect fertility. It’s taken seven months because it’s so damn hard to find accurate information.

It turns out the best most obgyns can offer is birth control (not a great option if you’re trying to get pregnant), Lupron (a nasty drug with horrid side effects), or ablation (an ineffective surgery that puts women into a revolving door of more surgeries when symptoms inevitably come back). After months of research I finally zeroed in on the current gold standard for endo treatment: excision surgery, a procedure practiced by only a handful of specialty surgeons. It has the lowest rates of recurrence, and the top surgeons tout the fact that many of their previously infertile patients are pregnant within a year of surgery. Two birds with one stone.

I’ve had consultations with three specialists in the past few months but ended up choosing a doctor in my hometown that was in-network with my insurance (something that proved to have the rarity of a unicorn among excision surgeons). When I awoke from surgery yesterday my husband showed me internal photos and a video of the surgeon explaining what he found and what he removed. A fibroid the size of a lemon along with some smaller ones from my uterus. Polyps growing inside my uterus. Endometriomas (cysts caused by endo) from both ovaries. Adhesions (sticky scar tissue) that were gluing my left ovary to my uterus. Endometriosis from numerous places in my pelvic area. No wonder I’m not pregnant. My insides are a mess.

I am in pain but am feeling something more terrible and oh-so-dangerous for infertiles: hope. I am so full of hope.

Month 33: IVF

I’m staring out the window as trees sway back and forth in the severe winds that are consuming our yard. Neighbors are losing power and I’m ruminating on the thousands of dollars worth of drugs in my fridge. An IVF cycle is timed like a perfectly choreographed dance and there is little room for misstep. Including keeping medications at an exact temperature. What will I do if my fridge loses power? My mind has been running through every scenario where this could get messed up. I’m one of the unheard of lucky bastards that has full insurance for IVF. Still, it’s not lost on me that this is a $25,000 cycle and if I can’t stay in sync, I’ve blown my chance. Maybe my last chance.

My alarm buzzes. 7:00pm. I take out my new bible, a spreadsheet meticulously detailing times and doses for my morning and night shots. I set out tiny bottles and place a syringe next to each. I double check the dosage, fill the first syringe, and slowly stab the needle into my belly. I repeat each step with the next tiny bottle.

My stomach is tender from the dozens of needles it’s seen this week. Every day it swells a little more as the injected hormones trick my ovaries into expanding follicles to the size of grapes. The hope is that each follicle will contain an egg. A microscopic egg. An invisible speck holding my last chance of pregnancy.

A few days later I’m at the fertility clinic, talking to the anesthesiologist. Everything has been building to this moment. The consultations, testing, blood draws, ultrasounds, anxiety, calls to the insurance company, emails to my nurse, shots in my stomach, swollen ovaries and belly, have all been for this. The egg retrieval. In a few minutes, I’ll be in a medically induced slumber while a doctor puts a needle into my vagina, through my vaginal wall and up into my ovaries to collect whatever eggs are there.

I’m so nervous and when I’m nervous, I start talking. “Have you ever had a case where the guy wasn’t able to produce a sperm sample?” I think of the room next to ours where countless men have been given a cup and porn and are asked to stay there until the cup has something in it. For me, everything is medical and done to me. For the guys, they’re asked to come on demand in a sterile medical clinic. It sounds beyond awkward.

But this is an indispensable piece of the choreographed cycle. A fresh sample has to be produced at this moment in order to inseminate those newly harvested eggs. An inability to perform could mess up the entire cycle. “No, but we’ve had a few who were so nervous they left for a bit to calm down and then came back.” I thought about my Mormon upbringing, and the staunch no-porn ever policy that permeated. “Do you ever have religious guys who won’t go into the room?” The nurse thinks this over. “Yeah, we did have one guy who made us take all the magazines and videos out before he would go in.” She’s quiet for a minute then adds, “We also had a guy who stole all of the magazines when he left, just walked right out with a huge stack. I wonder if it made his wife second guess trying to have a baby with him.” I was mulling this over as the anesthesia began to kick in and everything faded to black.

When I come to, I’m in a recovery room wearing a plush bathrobe and slippers. My husband is there holding my hand. My mind is fuzzy but within seconds hones in on the only thing in the world I care about right now, “How many eggs did we get?” I ask the nurse. “Seven”, she answers. Seven. Not great. Could be worse, but not great.

The next day, an embryo starring version of the Hunger Games begins as I eagerly await the calls from my nurse letting me know how many embryos are left.

Day 1: “Good news, all seven of the eggs fertilized!” Yay! I wasn’t expecting this because it’s typical for a good percentage of eggs to not fertilize. Off to a fantastic start.

Day 3: “All seven are still going.” Holy shit! 100%! We must make the healthiest, most amazing embryos ever. I feel like I’ve won the lottery.

Day 6: “Five of the embryos have dropped off. We just have two left to send for genetic testing.” Oh, man. This is not good. This is really not good. Please, please, please, just let me have at least one that makes it.

Day 14: “Neither of the embryos are viable.” I’m shaking and tears are running in streams down my face. No. No! This can’t be happening.

It’s been almost three years since I started trying to get pregnant. I’ve had a lot of excruciating moments but never once considered that my journey could end without a baby. I have IVF benefits, I’m under 35, my doctor seemed sure of success. IVF was the thing you did that worked after everything else failed. It’s a procedure so meticulously designed, so medically exact, so invasive, so expensive, so state of the art, of course it will work. But it didn’t.

All the consultations, diagnostic testing, blood draws, ultrasounds, anxiety, calls to the insurance company, emails to my nurse, shots in my stomach, swollen ovaries and belly, needle through the vagina, emotional mayhem, all of that was going to be worth it because it would end with a baby in my arms. My baby. But my uterus is empty. I’m actually in worse shape than when I started because I had put so much hope into this procedure, was so sure that it would work, that my heart is now empty too. My body is broken. My mind is broken. My heart is broken. That enrapturing little tease, hope, has fled.

Continued at My Infertility Story – Part III

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Month 1: The Journey Begins

It’s the summer of 2014 and my mom, brother, and his girlfriend are visiting me in Charleston for the week. Within minutes of waking, I run into the kitchen waving a freshly peed on pregnancy test. It’s my first month trying to get pregnant and all I can think about is how amazing it would be to share a positive test with them while they’re visiting.

I’d been married for eight years before we started trying. We were waiting for a number of things to align before we felt “ready”. In the two years prior, I had been preparing. I was monitoring my cycles and knew the exact day I ovulated each month. I had read multiple books on fertility, knew which days to “try” for the best odds, had memorized every symptom of early pregnancy, hell, I’d even toured the birthing center I would use. So while I knew that only 30% of couples got pregnant the first month trying, I was sure I’d be in that group. I felt bad for the 40% who take longer than 3 months but come on, learn how to track your cycles, it’s not rocket science!

I wait the three minutes and check the test. Negative. Next month, I think.

Month 4: Part of the 40%

It’s now November and I’m up on the corrugated metal roof of our little screened-in porch in the backyard. My footing is tenuous as I sweep two years worth of branches and leaves onto the ground below. I’m worried that a fall would cause a miscarriage. Okay, so every test I’ve taken this week has been negative, but my period’s a week late so I have to be pregnant, right? I’ve been spotting for two weeks but no real bleeding so I’m not out of the game yet. Later that day, my period starts. Damn it! I’m officially part of the 40%. Next month, I think.

Month 7: Something’s Not Right

It’s February, two days before my 33rd birthday. I open a cream colored can of paint and start rolling it onto the walls of our spare bedroom. I’ve remodeled or painted every room in the house since we bought it seven months ago, but not this one. This one is going to be a nursery and I don’t want to paint and buy office furniture just to have to replace it with new colors and a crib in a few months. I’m now part of the 20% that aren’t pregnant within 6 months and I’m starting to worry. I choose colors that will work for an office or a nursery and I make an appointment with my OBGYN.

Month 8: I Have Low Progesterone

I’m at my OBGYN’s and making a case for why I think my progesterone is low. I’ve been reading medical journals and books and am positive this is why I’m not pregnant. She’s not convinced. She orders a ton of bloodwork and sends me to another facility to have dye shot through my uterus, tubes and ovaries to see if everything looks okay. Things are starting to feel unnatural and medicalized and I’m scared.

Month 9: Something’s Definitely Not Right

I’m loading groceries into the back of my rental car. Not just any groceries, but snacks for some VIP guests that I’ll be spending the next few days with. I’ve been preparing for this trip for months, making sure every detail is perfect. I’ve never done anything at work that was so high pressure. As I close the trunk, I feel liquid running down my legs, soaking my jeans. So much liquid it feels like I peed my pants. I look down and I’m covered in blood, even though I’m wearing a tampon. Oh god, what is wrong with me. I’m terrified and my hands are shaking as I grab a change of clothes and run into the bathroom of the grocery store, trying not to make eye contact with anyone. Back at the hotel I take a long shower and spend the rest of the night alone, sobbing uncontrollably. If I had gotten pregnant that first month, I’d be delivering this month. What is wrong with me.

Month 10: Thank God, I Finally Have an Answer

I’m back in my OBGYN’s office. She says I have something in my uterus that shouldn’t be there, either polyps or fibroids. She’s confident this is why I’m not pregnant and why I’m having such crazy periods. She recommends surgery, saying that whatever’s in there is blocking the embryo from implanting and that once it’s removed, I should be able to get pregnant. I’m actually giddy as I leave the office. I finally know what’s wrong with me. That night, I let myself start dreaming of baby names again.

Month 16: Surgery #1

I’m officially part of the 10% classified as “infertile”, meaning I’m not pregnant after 12 months of trying. I’m at home recovering from surgery. She removed polyps from my uterus and assures me they were the cause of all my problems. I can start trying again next month. Next month!

Month 18: +

I reach up and grab the huge plastic bag of pregnancy tests from the bathroom closet. I like to test every day starting five days before my period. That gets expensive so I’ve started buying them in bulk – packs of fifty. There are only a few left in the bag. I pull one out. Two minutes later I’m staring at a positive test. A positive test. Holy shit, holy shit, holy shit. It’s faint but I swear to god it’s there. I call my husband in and he can see it too. I think of how couples react in the movies and am sure I’m supposed to be smiling and crying tears of joy and we should be hugging and jumping up and down but something doesn’t feel right. I feel numb and scared. I don’t dare believe it.

The next morning I’m scrambling to get packed and on the road for a work trip. I’m terrified to take another test because if yesterday’s was a fluke I don’t think I can bear it. But I have to know. Two minutes later, I’m holding the test up to the light. I can see a positive but it’s even fainter than yesterday’s. My husband comes in and says it looks negative to him. But I can definitely see it. I throw an extra test into my suitcase and hit the road.

That night I’m in a work meeting and my head is pounding. It’s so bad I can barely think. After the meeting I head to the grocery store to grab some Tylenol. Wait, is it Tylenol or Ibuprofen that’s safe to take while pregnant. I Google it and grab the Tylenol. I also Google about the headache and find out it could be a sign of early pregnancy or a chemical pregnancy (a really early miscarriage). I head back to my hotel room and fall asleep.

The next morning I’m filled with dread as I take the pregnancy test. Please just let it be positive, please. It’s negative.

Later that day I’m in a meeting and start to bleed. I head into the bathroom, numb and shaking. I’m alone, so I let myself cry. After a few minutes, I pull myself together and head back into the meeting. One of the women tells me I picked a terrible time to go to the bathroom and have missed something important. I hold back tears and tell her I’m sorry. But I want to scream.

I want to tell her that my dream just died in that bathroom. That I’ve spent my whole life yearning for a baby. That I can picture her in my mind. We explore the world together. We garden and I teach her about plants and animals. I play her my favorite music and we dance and sing together. I do everything to make sure she knows she’s loved and accepted unconditionally and I teach her to love herself that way too. I teach her to be strong and independent and to never be afraid to be herself, because she’s enough. We go to drive-ins and at home we have movie nights where we watch Pee-Wee and the original Hairspray because I want her to be a little weird, like me. I can see my husband holding her for the first time and he can’t believe how tiny she is. He looks at her the same way he looks and me and I know he’s in love with her. I see his heart breaking every time she does something cute, because it’s too much love for him to hold. We love to gang up on him and tease him, and he loves it too. They’re the cutest best buddies that ever existed and I can picture them walking hand in hand together or taking a nap. He’s so tender with her it just about breaks my heart.

But all of that just evaporated. The meeting ends and I cry the entire two hour drive home.

I’ve spent the last eighteen months in the same damn cycle: hope, ovulation, dreaming, waiting, testing, period, heartbreak, tears, buck up, repeat. The heartbreak gets deeper every time. This month was too much and I don’t know if I can try again, if my heart can heal if goes through another break. Maybe there won’t be a next month.

Continued at My Infertility Story- Part II

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