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.