Cait's Story

Infertility. 1 in 8.  That’s me. I’m that 1 in 8. That woman whose body isn’t able to do the most basic and natural work of being human: creating a baby. Ugh. Okay, so that sounds pretty pessimistic and dramatic. But if we’re being honest (and that’s the point of these blogs, right?) it’s certainly a thought that runs through my mind often. With the accompanying feelings of hopelessness, uselessness, anger, and deep, deep sadness. For what I’ve put my husband through (it’s not HIS fault I have this disease that has taken my fertility). For what I’ve put my family through (two families terrified to tell me about my sister’s and my sister-in-law’s pregnancies, and subsequently walking on eggshells around me during said pregnancies because they knew how badly I’d take it – how unfair is that to THEM?). For my poor friends who’ve had to listen to me cry and worry and have anxiety attacks for countless hours over the years. And because the clock is ticking and I see that label of “advanced maternal age” every time I go to the doctor. Which is a lot. 

Let me take a step back. Hi, I’m Caitlin. Joe and I have been close friends since seventh grade, when we’d get in trouble for passing notes in science class. As adults, among other things, we’ve been lucky to be able to lean on each other for support and questions and commiseration in our journeys to have babies. He asked me to be a guest writer for his blog today to share my journey to parenthood. It’s different than Joe’s, of course (I mean, there are lady parts involved), but many of the emotions and challenges are similar. 

Me and Joe!

I have infertility because of an insidious, mysterious disease called endometriosis. Simply described, endometriosis is when tissue similar to the tissue inside your uterus grows in parts of your body outside your uterus. It’s essentially like little bloody cysts all over your insides. It can grow basically anywhere, even in the lungs! And it wreaks havoc wherever it goes. It causes the organs and tissues inside the body to stick together, distorting the anatomy and causing lots of pain and other side effects, like GI issues. I have Stage IV endometriosis, which is the worst kind. I’ve had five surgeries to try to manage it, and they’ve found it in my ovaries (more on that later), on my bladder, on my intestines, on the lining of the abdomen, on my appendix, on the fallopian tubes, in the peritoneum, and more. Periods tend to be heavy and extremely painful (I’ve had many work days where I have to hide in the bathroom for awhile, curled up in a ball because the pain is so bad). Endometriosis is underdiagnosed. Up to 6.5 million women in the United States suffer from this disease, and are written off as having anxiety, being emotional, having a low pain threshold, or told “it’s just normal to have periods like this.” Let me be clear: It is NOT normal to be doubled over in pain and throwing up when you have your period. If that’s happening to you, demand that your doctor figure out what’s causing the problem! I wish I had. 

  My mother-in-law and I teamed up to get my husband this shirt. He always offers to wear it when I have endo pain, or am sad about the infertility.

It takes an average of 7.5 years for a woman to be diagnosed with endometriosis. That’s because the symptoms are somewhat nonspecific and can easily be mistaken for other things. I’m pretty sure my symptoms started when I was 24. I had persistent abdominal pain, random vomiting, and other GI issues. The doctors did tons of testing for everything from reflux to autoimmune disorders. They ended up calling it IBS and basically told me there was nothing to do about it except change my diet (like I hadn’t tried that already). I remember thinking, “I guess I just have to get used to living with pain all the time.” A heartbreaking thought for an active and busy 24 year old! Now that I know better, it’s clear that those symptoms were endometriosis all along. And you know what? If a doctor had figured it out then, maybe I wouldn’t be infertile. 

When I was 30, I went through a period of about a month when I had severe, acute, throbbing abdominal pain. I went to the emergency room three different times for it. The first two times they wrote it off as probable kidney stones, a fluid-filled cyst that had ruptured, or maybe just bad gas. The third time the pain was even worse. It was the worst pain of my life. They finally thought to do an ultrasound of my ovaries, and low and behold there was a large, solid cyst in my right ovary that had ruptured and was now bleeding out into my abdomen. I needed emergency surgery. The pain I had been feeling for that month was a dangerous condition called ovarian torsion where my ovary, too heavy with the weight of the cyst, would twist over on itself and the structures attached to it, like the fallopian tubes, cutting off the blood flow to the ovary. After the surgery, the doctor came out and said, “there was endometriosis everywhere in there!” This is the first I heard of the disease, and suddenly the pain and sickness I had had throughout my 20s made sense. It all fit. 

  About a month after surgery, I was too weak to walk to our seats at the baseball stadium. 

Fast forward a few years (years that included another surgery and several other medical treatments to try to control the endometriosis, by the way, including using drugs to put me into menopause – I STILL have hot flashes because of that terrible medication). Newly married, my husband, Rob, and I were ready to start a family. When I told my OB, he immediately wrote me a referral to the fertility clinic. Most women have to try naturally for 6-12 months before they get this referral. But he didn’t even think it was worth us trying on our own because the endometriosis was too severe. I remember him saying, “I’m not touching that. You need an expert in fertility.” Awesome. 

Enter the inimitable Dr. Shanti, our reproductive endocrinologist – the infertility specialist. She’s about 5’5”, weighs maybe 100 pounds, is smarter than anyone in the room, and is a force to be reckoned with. She is competent, compassionate and honest. On our first visit she told me my endometriosis was stage IV, something I hadn’t known. On our second visit (the one where she injected dye inside me to determine if my fallopian tubes were working – they weren’t), she told me I would not be able to have children of my own, and we should consider the idea of donor eggs. 

What a punch in the gut. To be told you’ll never have your own children. And that the only option is your husband’s sperm with some other chick’s egg. I was humiliated, broken-hearted, angry and bitter. I had so many nights just sobbing and yelling in the arms of my husband, or on the phone to my parents, or alone on the floor in my bedroom. It just wasn’t fair. And it hurt so so so much every time another friend announced her pregnancy. I was so happy for them, but it was just another reminder of what I couldn’t do, and an experience I might never have. I felt a complete loss of control. We looked into adoption and fostering. Joe’s sister Shawn was a wonderful resource to us, and we had some meetings at adoption agencies, my amazing friend Suzie subbing in as my partner when Rob had to work (come to think of it, they probably thought we were just a nice lesbian couple wanting to adopt!). But my husband wanted a child that was naturally his own. And who could blame him? HE wasn’t the one who couldn’t make children. He should at least have this. So, after much introspection and conversation, we started looking into donor eggs. 

I often compare the egg donation website to Tinder. You type in the physical features you’re looking for, and off you go, swiping away. But of course there is MUCH more detail on this website. You can see their ethnicity, ethnic background, level of education, health history, genetic information, and the health histories of their entire families: siblings, parents, grandparents. You can see their hobbies and interests, grades in school, pictures, and personal letters they write to you about being egg donors. As if this wasn’t overwhelming enough. I asked Rob that we look separately, and each pick our top three before coming together to discuss. It was just too emotional and too humiliating to do in front of my husband. Picking the woman he’d make a baby with. I had resentful and bitter thoughts as I made my picks. As my family and close friends can tell you from experience, I have this special trait of channeling my negative feelings into bitter and mean comments and behaviors toward others. That trait was on full display during those months. I’m not proud of it. I was hurting so much, and it’s like I just needed someone to understand how much I was hurting. I wanted them to hurt too. It was a dark time. So much anxiety. I was so depressed. Despite my behaviors, most of the people around me were incredibly loving and supportive. But they didn’t know what to do for me. How could anyone possibly understand the hurt of a broken body that leaves you infertile unless they’ve experienced it themselves? I felt so isolated. No one got it. I had a wonderful therapist who gave me many coping strategies, but I was also taking hormones this entire time. So now you’ve added hormonal treatments to a person who is emotional and dramatic on her best day, but is currently processing what her identity and life will be like now that she can’t have children, and is depressed and anxious. Bad, bad combination. I’m surprised Rob kept me around. And his family. And my family. I definitely lost some friends because of my poor handling of emotions and inability to show my happiness for their life successes during that time. In a word, it sucked. 

Making sense of all the IVF meds with my parents, the nurses.

But there’s more. Let me tell you about IVF. There are shots, yes. Sometimes up to three per day, in the stomach and the butt. There are also suppositories and a few oral medications. Each day in the cycle you take a different combination of the medications at the exact right time. We lived and died by that schedule. Some of the shots in the butt I was not able to give to myself – the needles were just too big, and the medicine just too viscous for me to get the right angle. If you’re lucky and you get pregnant, you’ll get shots in the butt at least twice per day until the 10^th week of pregnancy. During the cycle you go to the clinic each week for an ultrasound and lab work. It feels like the Hunger Games. Will this cycle live to see another week? Will my body cooperate? Will our hopes be crushed again? If so, that’s all folks. No more ways to get me pregnant. See ya. Those days were filled with so much anxiety and dread.

   

Shots, shots, shots. At home, in the car outside a restaurant, in the bathroom at work.

The day they get you pregnant, called the embryo transfer day, is easy. It’s about a 10 minute procedure. I was awake, and Rob got to be in the room, and we got to watch the whole process on ultrasound. I took some nice medicine to keep me relaxed, and just remained horizontal for the rest of the day. Then begins the Two Week Wait. This is the time it takes for the embryo to find a little space in the uterus and implant itself there. You have no idea if you’re pregnant. At the end of that two weeks, you go in for a blood test. And you wait an agonizing two or three hours for them to process it and call you. And when they call you, it’s all business. You don’t get the luxury of a cute little scene in your bathroom with your husband like in the pregnancy test commercials. You get a call at work, in the middle of teaching graduate students on the last day of the semester. They tell you the numbers, whether that’s positive or negative, and not to get too excited yet, because now you need to come in for lab work every few days for the next week to ensure the numbers continue to rise. And you have to arrange your facial expression just so and keep teaching. And call your husband at lunch, in the bathroom so no one can hear you. Just one more happy moment infertility screwed up for us.   

Our little embryo on transfer day

By the time we “graduated” from Dr. Shanti to the regular OB, my butt was so bruised and sore from the shots that I had to buy a donut to sit on. A nerve had been hit by a needle at some point, and I was limping. I was fatigued and so nauseous. I lost 11 pounds in that first month of pregnancy. But that’s a normal pregnancy problem, probably something many women welcome, because it helps them to know their body is starting to change to support that little life. I, however, was miserable. Physically, yes, but that truly felt like nothing compared to the emotions. My body had betrayed me so many times in the reproduction department that I was certain something would go wrong. I can honestly say I was not able to enjoy that first trimester at all because I was so afraid. It was almost like the IVF process gave me a sort of PTSD. And, having done some research on it, apparently that is a thing. Now, believe me: I wanted SO BADLY to enjoy my pregnancy. To love it. After all, isn’t this what we’d been dreaming of? What I’d always hoped for?  I did try to change my attitude – meditation, prayer, long walks (because of course I wouldn’t dare actually work out), church, sleep, comfort foods, time with friends, time alone….the list goes on. I even got a third job to keep myself busy and distracted. But, as with many tough things in life, the emotional damage was already done. I don’t think I really let myself believe that there was a little human in there until I was about 20 weeks pregnant. I just didn’t trust my body. 

Yep. There’s really a baby in there. 

Suffice to say, we had a (mostly) uneventful pregnancy after that, and our beautiful, perfect, amazing miracle daughter was born at the beginning of 2019, eyes wide open, ready to eat immediately, and smiling at her grandparents within an hour of being alive. People always said to me that once I held that baby in my arms, I’d forget all the hardship we’d been through and it would all be worth it. She’s the most incredible thing that’s ever happened to me, but I’m still not sure the 15+ years of dealing with this disease, and the four years we’ve been on the infertility roller coaster is “worth it.” Not when getting pregnant should’ve been natural and easy. Unlike my strong and resilient friend Joe, the tough situation that life brought me with all of this made me bitter. For awhile. It broke me a little. Now, two years later, I have come to terms with some of that anger and resentment and hurt. But that old familiar adrenaline rush of an anxiety attack starts a little every time I’m told about someone in my circle being pregnant. I don’t want it to be that way. I really don’t. But it seems to be a tough thing to lose. 

  Sweet, happy baby girl! 

I’m happy to report that we have one embryo left, and are working through an IVF cycle right now. I’ve been doing yoga and meditating daily, and got a nice reality check and perspective change, like many I would imagine, during the COVID quarantine. I know what’s important, and that we can deal with all kinds of uncertainty and loss of control now. It’s basically our current day-to-day existence.  All of this has helped immensely with my emotions and anxiety, and I’m having a much more serene experience this time around, though I have to say – the process of alternative reproductive technology, no matter which route you travel, is not for the faint of heart. My heart still pounds with nervous anticipation and a little dread every time I enter that clinic. 

Of course our journey will never really be over. There will be tough conversations and hurt feelings and high emotions in our daughter’s future that will most certainly be related to the fact that she’s not genetically my daughter. Is her mom really her mom? I believe I am (though that nagging uncertainty still lingers sometimes – do I really deserve to call myself that?), but at some point, it will be up to her to make sense of it all. We will be honest with her about everything, from the moment she can understand it. We want to normalize it for her, and help her to realize how special and loved she is. But she will have existential crises. Ones that are very unique to a donor egg baby. I pray daily that we didn’t set her up for some major mental health or adjustment issues because of the way she came into being. Anyway, I was hoping to avoid it, but I think I’m going to have to close with a cheesy ending here. One thing is for sure. That child is the most loved little being on the planet. And she will know it forever. If you’ve made it this far, I thank you for reading my story. And if you have a second, please send up a prayer for all the men and women battling infertility, and all the humans who want nothing more than to have a child of their own.  

Thankful for this beautiful family.