Life isn’t fair. There are no should haves, nothing promised.
Yet, I still have difficulty accepting my infertility. In the imagined movie of our lives who would ever see herself in this lonely place, in this unfair life, of our worst fears?
Not the movie you want to star in? Me neither.
It has been a long, slippery slope of receiving one diagnosis after another and another until I’ve reached the point of having tried to conceive for six years through surgeries to prepare my uterus, procedures to use my own eggs, and attempts with donor eggs. I now find myself without my eggs or uterus to use.
In the beginning, after a year of trying to conceive with no luck, a doctor easily found an obvious reason for my infertility—a large fibroid in my uterus. It was removed. Following some time to heal and try on our own, I then did three IUIs and ten IVF cycles, enduring various forms of heartbreak from canceled cycles, cycles with no viable embryos, embryo transfers that resulted in pregnancy only to end in miscarriage. Finally, I made the tough decision to move on from using my own eggs and asked my younger sister to donate her eggs.
When she agreed, my hope rose again. She provided a good number of eggs and based on her age and the number of embryos created from my sister’s eggs and my husband’s sperm, I “should” have had a half-dozen normal embryos to work with after testing—more than enough!
Instead, the testing resulted in one poor-quality normal embryo and a mosaic embryo (which contains both normal and abnormal cells). The “normal” embryo was transferred into my uterus. However, after it failed to implant they discovered that there was an infection in my uterus, making implantation impossible. We went from hope and focus on this cycle to devastation after the terrible results and loss of the one “normal” embryo.
Mine is the story of expectation, loss, grief, letting go, acceptance, moving on… repeat.We then debated whether or not to take a chance on the “transfer with caution” mosaic embryo. No one could definitively say what would happen, which is actually true of any embryo, but the likelihood of success with mosaic embryos is lower. We were skeptical but decided to proceed because we either had to discard it or transfer it to me.
But the many attempts to transfer it were called off due to the worsening condition of my uterus. It was recommended that I pursue a gestational carrier, however, the mosaic embryo could not be transferred to anyone else. We finally moved forward with a Hail-Mary pass (transfer) with this embryo. Still, no miracles happened.
Now after spending so much time to prepare my body for pregnancy, eight embryo transfers, five miscarriages including two from spontaneous pregnancies, I had nothing to show for all of the effort.
Mine is the story of expectation, loss, grief, letting go, acceptance, moving on… repeat.
Where does that leave me?
With the patience and love of my husband whom I’ve known for twenty years.
And a slight attachment to my one cup of coffee every day and the lift it gives to me to keep going.
You can’t see my infertility but if you knew me you might have guessed. I’ve been married almost a decade and don’t have children. I smile (through the pain) when you tell me about your pregnancy and I have what may be a suspiciously large body of knowledge about the various ways babies can be made. My only physical scar runs out of my belly button where the fibroid was removed. The other scars are emotional ones. There are no outward symptoms. But inside, I’m heartbroken and crushed. You don’t see it and even if you could see through my façade, very likely you can’t relate to the extent of what I’ve experienced.
In general, I feel sad and guilty without having done anything wrong. I’ve been an obedient patient, following every direction, but my fertility doesn’t follow, and it’s frustrating. Trying to understand and accept my diagnosis without definitive explanation or causation is difficult, but I have no choice.
In general, I feel sad and guilty without having done anything wrong. I’ve been an obedient patient, following every direction, but my fertility doesn’t follow, and it’s frustrating.There’s an expiration date on everyone’s eggs, which we don’t find out about until we try them. Mine had an early date. But how did my uterus, which should last a lifetime, self-destruct on me? Yes, I’ve had surgeries but others have had far more invasive procedures on this sensitive organ and can still carry. I feel like a circus freak — one of a handful of people a year told by my doctors to pursue a gestational carrier, and who is also unable to use her own eggs. I was the first of my doctor’s patients in five years not to have responded as expected to a commonly used drug, falling on the wrong side of the equation every time.
I’ve become defeated — hardly surprised or upset with each disappointment. I’m the lonely last woman standing again and again. Seeing others get pregnant is hard, but I get through it by simply assuming that everyone else can, so I’m not surprised and hurt by it. I accept it.
I’m a highly functioning infertile.
The truth fucking hurts sometimes, but it’s still the truth. I am the outlier that no one envies who has had her doctors go from being cautiously optimistic to incredulous at the pile of diagnoses to overcome. I’ve been to ten different clinics throughout my journey so far. Some doctors I’ve seen for only one consult, others for years. The doctor I’ve been with the longest told me I am one of the most challenging and complex cases of his hundreds of patients. Others have told me they’ve never seen a case like mine before. I’m not proud of this recognition.
There are different ways of measuring infertility among the infertiles: How long have you been trying? With your own eggs? Your partner’s sperm? Did you need medical intervention or have a spontaneous pregnancy? IUI success? IVF? How many? Your uterus?
I am the most infertile: I’m the infertilest. I’ve passed Options A, B, C, D, E… I stopped counting how many.
Getting to the point where I am open to working with a gestational carrier has been a difficult process. There is a little bit of relief, yet it’s another loss. The pressure is off my body yet I’m forced to give up control in the biggest way.
I don’t really know what my next move should be. There’s no guidebook. I am fortunate to live in an area with many top clinics but I have crossed state lines, the country, United States borders, and oceans chasing options.
I think about how things would have been different if I knew on Day 1 that I couldn’t use my own uterus or eggs. I’m trying to stop tallying my grievances and find gratitude, to find acceptance and a path forward.
Pain comes from the heart’s unmet desire. There has been so much loss and exploration of the relationship between love and grief; you can’t have one without the other. It’s an extreme endurance test.
People in my life that care still don’t know what to say, but there are some simple, comforting words:
“I know you’re in pain, and I’m sorry for how difficult this is for you” or “I’m here for you whenever you need me.”
My story is still being written yet the end credits are already long — the people I’ve met on this journey in all of their various roles, the places I’ve been physically and emotionally. I am a different person now than I was in page one.
Every day I look for strength, love, acceptance, and endurance from myself and others to keep going. Coffee helps.
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