So after those fateful words of “premature ovarian failure” were spoken, my life seemed to go in fast forward so drastically and dramatically. We were picked up in this whirlwind of fertility treatments with drugs, doctor’s visits, ultrasounds, and ice packs. Our entire lives revolved around everything involving bringing another baby into the world. I prayed. I binge- watched Netflix. I cried. Month after month, we were fast tracked onto a new fertility regiment. Timed intercourse with Clomid. Then with Letrazole. Then on to IUI with injectables. Then it was time for the big kahuna. The mecca I thought. IVF. This was finally going to be it!
But can we stop here for just a moment? Can I talk about how much grueling effort and thought and discussion came into play before we made it to this point? My husband and I knew there were options, like adoption or giving it more time. I could spend a whole post discussing with you why we decided adoption wasn’t for us at that exact moment, but also how we still knew it was a real possibility in the future. But the doctor said “time is running out.”
At 29, I suddenly felt like it was all ending. We needed to act fast. And coming up with the money to fund this IVF felt nearly impossible. Oh, I didn’t mention it? We had zero insurance coverage for fertility treatments. It’s often the case for most, unless you are blessed to live in Illinois or another northern state.
I was actually excited. IVF was a beautiful gift of science! Seriously. It gives our little group of infertility warriors new hope. But what I did not research until after our IVF failed, was it takes an average of 3 IVF cycles for success. Let’s just say after spending nearly 25K on 1 cycle of IVF, that was not in the cards for us.
So you guessed it….it didn’t work for us. I prepped and primed myself for this magical moment. But after we went through nearly a whole cycle and I had only 3 eggs, (which is very common, even with very powerful ovulatory stimulation drugs, for people with premature ovarian failure) I was still positive. Because if I’m being honest, I held out hope beyond hope. And I had a group of people praying because I really thought it was our time.
To begin to explain the devastation could take me pages and pages to go into, but I’ll suffice it to say, I was broken. Deep down in my core, broken and battered and bruised. I was in a thick haze of grief with stifling sadness that made it hard for me to breathe most days.
But I found the smallest ray of hope. To backtrack a little, midway through my IVF cycle, I pleaded with my reproductive endocrinologist (RE) to test me for autoimmunity. Laughable now I know. There are thousands of autoimmune diseases, but I wanted to see if I had one or maybe ten. 🙂 Her first response was “why?” and “I can’t test you for all of them.” So I asked her to test me for Celiac disease. My cousin had recently been talking about how he felt much better after going gluten free. And the only thing that stuck with me about autoimmunity is that it’s common for it to be inherited. i.e. your mom has XX, because of genes, you may also have it too. A stretch since it was a cousin, but nevertheless, the RE agreed to test me for it.
So on December 29, 2016, I got the phone call from the RE personally telling me, I tested positive for Celiac disease. And that I didn’t just test positive, but my labs were sky high. She reassured me, as she too suffers from the disease, that it is very manageable but it would take a lot of adjustments on my end. This news came in the middle of our perfectly laid out IVF plan. Should we stop now? Wasn’t I pretty sick? Couldn’t this impact our IVF results? But instead of listening to my gut instinct, we proceeded on with IVF confidently as the doctor encouraged us that it was “do or do without” time, and it failed.
Again, if you research Celiac disease, you’ll find some pretty grim statistics about life expectancy, nutrient status, and likelihood of contracting other autoimmune diseases (because once you’re in the club, autoimmunity wants to slather you with even more debilitating conditions like MS or RA.) I was of course referred out to a GI doctor where I did my endoscopy and biopsy to confirm the medical diagnosis of Celiac disease. So yes, I did in fact have an autoimmune disease ailing me. My intestines were all scalloped. And not scalloped in the pretty way a faux silk shirt from J. Crew or girly napkins look. Scalloped in a way that you wish your intestines actually looked smooth and healthy and robust to absorb essential life giving vitamins and nutrients.
So where was my ray of hope? My ray came in the form of this answer at first. Celiac disease. You not only have infertility but there actually may be a CAUSE for this infertility. Celiac disease. So in the middle of my second month of counseling, (I strongly encourage anyone and everyone to see professional counsel now and again. Because after all, if our minds aren’t happy, how can the rest of us be?!) I was determined all over again. Determined that I needed to actually research Celiac disease and figure out how to get healthy again. Insert *functional medicine.*
If I’m being honest, functional medicine kind of fell and somewhat forced itself into my lap. My brother, who was calling to check on me, knew of my despairs with infertility and my recent Celiac diagnosis. He had been chatting with a friend about me only to have her beg and plead with him to tell me that I had to work with her mom, who just so happened to be what we will call a “functional medicine specialist.” I was yet again in a familiar place where I often found myself. Scared again.
We worked together for about 7 months. She single handedly taught me more and offered a diverse wealth of knowledge and insight into my condition in that short time span then nearly all 7 years of a bachelor’s and doctorate degree did. I was on fire. And oh did I forget to mention one other tiny thing? I found out I had hypothyroidism as well.
If learning I had hypothyroidism on top of premature ovarian failure and Celiac disease weren’t enough, I got the call from my GI doctor’s office that my Celiac numbers were still elevated. As in, my diet wasn’t cutting it and my intestines were still not absorbing necessary nutrients for creating another human or to sustain the current human, me. By this time, it was October 2017, and after over 2 years of research, I plunged myself whole heartedly into the Paleo diet. Another ray of hope in all of this came in the form of Danielle Walker’s “Against All Grain” and “Celebrations” cookbooks which have since been my lifeline. (Linked in the bottom of the post)
This leads me up to near present day of 2018. My follow up labs after assuming the Paleo diet for 2 months, came back beautiful. Nearly all were completely negative. And this is my beginning. There’s not some magical bullet of a warm, fuzzy ending, but in the depths of some of the darkest years of my life, I survived. I researched and cried my way to today. I was alone in a desert, asking hard questions like “why me?” But I did not give up and still today, I refuse to. I survived and fought like hell to be where I am today.
Music has always spoken to me in dark times. And a favorite excerpt from a MercyMe song:
“…my joy, my pain would have never been my worth; If I knew what I know now, would’ve not been hard to figure out what I would have changed if I had heard….Dear younger me it’s not your fault; you were never meant to carry this beyond the cross.”