When the diagnosis drops..

The day I had been waiting for was drawing near. The day I took my last blood test and the results read “negative” for hCG, confirming that I had not developed cancer as a result of my molar pregnancy in November. After six long months I finally started to allow myself to hope. To allow the idea of pregnancy to creep back into my mind and make a home. The day dreams of having a baby: picking out names, growing belly and seeing a heartbeat on an ultrasound, hosting reveal parties and baby showers and maybe even making it to labor and delivery, meeting my baby, my own flesh and blood.

I was cautiously starting to dream until this nagging pain in my hip became too much to ignore. I knew this set back was more than a strained muscle or ligament because I had pain in several places from several different kinds of movements. Focusing on fitness was one of the ways I was keeping the depression after my miscarriage at bay, and now this injury was threatening to take that away. The gym and the soccer field are my happy place, where I set everything else aside and can just be in the moment. I love to push myself and find that I am always a little bit stronger than I thought I was before. This is where I thrive. However, this pain was now preventing me from doing both of those activities and it was time to face the music. I went to see a physical therapist who was pretty certain I tore my labrum, the cartilage in my left hip. I was devastated by this probable diagnosis, but it affirmed the symptoms I was experiencing and he sent me to get an MRI to confirm.

When it rains, it pours..

I swung by the imaging center to pick up the MRI results and received them in a crisp white envelope on a Friday morning. I sat in my car and tore the flap open, revealing the radiologist’s reading of my imaging. I quickly realized that I was going to have to look up half of the words on the report given that I couldn’t even pronounce them. As I started googling each of the findings, a diagram of the female reproductive organs glowed on my computer screen. I thought this was odd given that the MRI was of my hip joint and not of my uterus. Much to my dismay, I had not misspelled the diagnosis ‘hydrosalpinx;‘ the radiologist found a cyst that is often indicative of what those of us without medical training would call a blocked fallopian tube. This was not the news I was expecting, and I immediately started to cry as I thought of overcoming yet another hurdle toward getting pregnant again. I called my doctor’s office and they were gracious enough to get me in for an ultrasound the next business day to check things out.

At the ultrasound, the tech was teaching a new employee the ropes. While I lay in a dark room on a table covered in crinkly paper, competing thoughts ran through my mind. One side giving in to despair, utterly exasperated at the prognosis before me, and the other, a feeble attempt at hope, trying to convince myself it’s going to be ok in the end. The ultrasound tech and her trainee carried on an entire conversation about every detail of my uterus, fallopian tubes, and ovaries in hushed tones as if I was some specimen to examine. Of course, they are not allowed to provide any diagnosis, so I don’t completely hold this against them, however, it still felt cold and impersonal. As they took multiple pictures and measurements, I overhead them talking about the shape of my uterus and wondered to myself what it meant. My thoughts raced:

“Bicornuate uterus. I’ve heard that term before, I think. I have a feeling that’s not a good thing.. but she doesn’t seem concerned about my fallopian tubes. That’s positive, right? I’m sure it’s nothing. If she has to look this long she must not be able to find any issues. I’m ok. It’s all going to be fine,” I told myself.

The nurse called me a day or two later to tell me the ‘positive’ news: they did not see any evidence of a blocked fallopian tube and suspected the cyst had already dissipated naturally. I thanked her for the call and said, “I’m happy to hear that my fallopian tube isn’t blocked. However, I noticed on my chart online something about a bicornuate uterus. What does that mean?” “Oh,” she replied. “You didn’t know you had a bicornuate uterus? No one told you that when you were pregnant?” To which I replied simply that no one had provided this information before. She came back somewhat sheepishly with, “Well we were probably focused on other things at the time. You should keep your appointment with your doctor next week and she can tell you more about what that means.”

I mean, ok. I’ll just hang out here with my spiraling thoughts for the next week. That feeling of anxiety sits like heartburn in your chest. Leading up to my Wednesday afternoon appointment with my OBGYN, I felt like my potential future as a mother to living children hung in the balance. A bicornuate uterus can significantly impact pregnancy, putting me at higher risk for a late-term miscarriage or pre-mature delivery, however, many people can still have perfectly healthy, full-term pregnancies. A bicornuate uterus, nicknamed “heart-shaped uterus” has varying degrees of severity and therefore implications for pregnancy. I held my breath as the doctor sat down and pulled up the imaging, but when she looked at me she said with a big grin on her face, “are you here to get cleared to get pregnant?” I just blinked, kind of speechless. She seemed wholly unaware of my anxiety, and when I asked her about the bicornuate uterus, she was unconcerned. She stated with a casual air that the ultrasound imaging is so sophisticated now that anyone with less than a perfectly shaped uterus gets this diagnosis. She said I was perfectly healthy and gave us the green light to finally start trying again. That is, if I didn’t need hip surgery..

With the fertility obstacles behind us, I went to see a hip specialist the next day and he confirmed a torn labrum. To complicate matters, he was also concerned about my hip dysplasia that puts me at risk to re-tear the labrum, and without intervention, a full hip replacement in the future. So he sent me for more imaging: a CT scan, another MRI, this time with contrast, and a visit to a second surgeon to see if he thinks we should deepen the hip socket while we’re at it. In the meantime, I put my gym membership and dreams of having a baby on hold again.

Caught between a rock and a hard place

The second surgeon confirmed my fears, I do in fact need a reconstructive surgery called a peri-acetabular osteotomy to correct my hip dysplasia in addition to the labral tear. This will require a 10-inch incision (read: scar), 7-hour surgery, 3-5 day stay in the hospital, 3 months on crutches and 5 months before I can return to Orangetheory. As you might imagine, this was not in my plans for 2021. I envisioned that we would be starting to try to get pregnant this month instead of trying to schedule a major surgery. One other critical detail, my sister gets married in October, and I refuse to miss out on any part of her wedding. So we decided to schedule surgery after she walks down the aisle.

I am torn between doing what’s best for my body and what’s best for my heart. I feel like I’m choosing between two less than ideal circumstances: try to get pregnant knowing that it may be a painful process with an already torn labrum and risk causing more damage, or pass up 8 month’s worth of potential pregnancies in order to ensure I can get the surgery this year. I always dreamed of having an active pregnancy and hoped to work out well into my third trimester, but I have to acknowledge that if I want to try to get pregnant now, that process is going to look different than I imagined.

Moral of the Story: Be your own Medical Advocate

So what do you do when the diagnosis drops? If you’re anything like me, you cry angry tears and wonder why God allows bad news to keep piling up. But when the flood of emotions recede you spring into action, doing everything in your power to get the best possible care and make sure you know all of your options. I quickly learned that no one else is going to advocate for you if you don’t do it for yourself. The doctors have a full case-load of other patients with equally demanding needs. I’ve had to remind nursing staff of the reason for my appointment and correct phlebotomists who assumed I didn’t need the tests the doctor requested. They don’t know the intimate details of your story and what you’ve been through. If you need better answers, call and call some more. Do your own research. Get a second opinion. Take charge of your health and do everything in your power to set yourself up for success when you are ready to try again.

I can’t do many of things I love right now due to my torn labrum, but I’m finding new ways to challenge and care for myself. For fitness, I’m focusing on strengthening my upper body, riding a bike for cardio, and doing yoga for flexibility. I’m figuring out how to be more disciplined in the kitchen, being mindful to give my body the fuel it needs from whole foods and not just eating junk to cope with stress. When it comes to fertility, it’s never too early to start preparing your environment and body to play host to a growing baby, removing toxins and filling your body with the right kind of nutrients. (For more on this, I highly recommend the book It Starts with the Egg by Rebecca Fett.)

Now don’t get me wrong, there’s a place for the pity party. But once the tears dry, we have to get back to focusing on what is in our control or we risk falling into a pit of despair. Grief is a very real piece of that puzzle, and I’ve had my fair share of it, but I’m not giving up on our dream of having a baby. After a couple of months of weighing our options and changing my mind several hundred times, we decided to leave the timing up to God despite the surgeon’s hesitation about pregnancy with a torn labrum. At the end of the day, I’m the one who has to live with the outcome either way. No one can bear the burden of carrying our child and my hip injury but me. I’m comfortable taking the risk of pain in order to have a baby, hell, pain is inevitable with pregnancy anyway. We’re not promised tomorrow and I want to know that I gave our hoped-for children the best possible chance. Whatever the timing, God knows and I’m trusting he will give me the strength for the challenge ahead, whichever scenario comes first.

Thanks for being along for the ride with us. We’ll all find out together what’s next.

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