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Cytokine Cells, Diminished Ovarian Reserve, Failed IVF & Facing Infertility Amidst the Pressure to Have a Baby (A Story from Here and Abroad)

Reviewed by | Last updated Oct 31, 2022 | 0 comments

by Darine E. H.

A Third Miscarriage – Feeling Defeated and Searching for Answers

“39 years and 6 months old” were the words typed on the bracelet around my wrist.

As I lay on the exam bed they had shoved me into to prep me for the D&C emergency operation, the nurse enters the small room where routine checkups usually take place:

 “We need to transition you to the ops room.” 

Transitions, my life mantra. At 39, I have moved across continents so many times, inhaled where I have been, and who I have become in my life.

That day though, I didn’t recognize the defeated person on that bed.

“Oh, don’t cry Mrs. Darine, I will pray for you. Hopefully next year you will have a baby.” With no hesitation, she wheeled me through the hospital corridors, where strangers gazed, and to where that year of 2020, my third fetus would be removed. I wish I had accepted her offer to cover my face before leaving the room, but I didn’t want local conservative norms to define who I am. I wanted to make myself believe that miscarrying, for the third time in one year, was ok. I wanted to live up to what I preach, that one’s identity is so much more than socially construed rules.

But, shame was my name.

In 2020, I was preoccupied with staying strong, researching infertility, similar experiences, and staying hopeful. In hindsight, I may have overlooked the signs, or was in disbelief that life can be cruel to me. After all, I thought we were even, God and I. Losing three times in one year, seemed like every other loss I have experienced in family and love. It was another battle, and I shall overcome it, I told myself. Infertility was not going to break me, not on my husband’s birthday in February, mine and on our wedding anniversary in that festive June month. Then came Christmas, when of course, we wrapped the year with our third loss. “I don’t see the pulse. I am sorry. We tried our best.”

I am not sure what to make of my first doctor’s consolations. I swing between appreciation and anger for not giving me the diagnosis I deserved sooner in the process. Closure is not overrated in infertility. This was a journey of multiple injections, cortisone pills, endless waiting in patient rooms, excruciating conversations of (future) mamas creeping into my dark space, draining most of our savings, and losses that awakened my deepest scars.

In 2020, I read a book titled “Finding meaning” and it was about grief and mourning. I was thirsty to understand and be understood. The book had one chapter about miscarriage and how disenfranchised grieving your unborn babies can be. It helped, but it left me wanting more.

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I didn't recognize the defeated person on that bed.

A Diagnosis – High Cytokine Cells

The sun set on 2020, and I hoped that we may be moving towards better times. But I was standing on the edge of a lake, not knowing if I ever would be able to walk over thin ice to the other side. I hoped, despite wanting an end to it all.

The doctor’s theory (which was completely dismissed by other fertility doctors) was that high cytokine in my immune system was not recognizing my pregnancies. The same cells that are supposed to protect me from diseases were turning into a serial killer of the multiple lives I was trying to grow in me. How can my body be in so much conflict with my being, and essence? I wanted those babies. I wanted motherhood. I devoured literature on the subject, and how childhood hardships can be a reason behind an overreactive immune system. Trauma, my old friend was back in the driving seat, breaching all my years of expensive therapy.

Another round of treatment to suppress the cytokine. Of course, its side effects were nothing compared to the idea of doing it amid a pandemic (Covid-19).

Shortly after, in January 2021, I had an operation on my wrist to extract a ganglion cyst. By then, the scene of needles and white robes was familiar. At least I was not waking up to news about not extracting enough eggs, or that few, or none, were mature.

IVF and I were not getting along and, in comparison to most women, my results had been mediocre. On that January cold afternoon, my husband wrapped his arms around me to comfort me as I unleashed an inexplicable cry. It took him by surprise, it was a bunch of cells in my wrist that we wanted to get rid of. It was not a pregnancy that was puzzling us: would it stay or evict my womb? I remember holding on to my purse weeks before my wrist operation after I told my husband that I was admitted to an emergency D&C. I was not afraid to leave my belongings with a strange nurse before my husband arrived. I had already lost what was most valuable that year.

I was holding onto it because I didn’t want to get into that operation room. I did not want to feel the void, for the third time again.

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I was standing on the edge of a lake, not knowing if I ever would be able to walk over thin ice to the other side.

I hoped, despite wanting an end to it all.

Diminished Ovarian Reserve (DoR) & What Not to Say to Someone Struggling with Infertility

Shortly after the cyst operation, I consulted other doctors.

Diminished Ovarian Reserve (DoR), was my second diagnosis. “Honestly, I don’t even know how you still have your period, Darine,” delivered in a harsh tone that seared the diagnosis into my being. The same feeling I had when I woke up after the D&C in the maternity section of the hospital with balloons in the corridor welcoming other women’s children into the world.

A third IVF cycle. Nada.

Disenfranchised losses are hard to witness and commemorate. Yet, they are an integral part of our lives. We grieve so much more than a death or a miscarriage: our fading friendships, our lost loves, the lives we used to cherish, the versions of ourselves we let go of and the ones we never managed to bring into the light, our dreams, treasons, the parents’ unconditional love we never got, and so much more. The faces of our unborn babies… and what kind of people we could have raised. Some of us navigate finding meaning out of the pain, others decide that it is just random bad luck. Whatever the journey is, it is an isolating one.

When I found the courage in me to open up about my infertility, it left me with more insult to my injuries, and cracked my childhood wounds wide open. It was only during my third IVF treatment in early 2021, and before my fourth loss in October 2021, that I started reaching out to friends and family.

I thought about drafting the “Things You Should NOT Say or Do Around an Infertile woman.” The list goes like this:

“At least you know you can get pregnant.”

“I also struggled to get pregnant, it took me three years, and they thought the problem was me but it was your father.

“Just stay strong and don’t get depressed, this affects your ability to conceive.” You think?

“Do you ever consider adoption or an egg donor?” We infertile are obsessed with alternatives to achieving motherhood. Not out of gratitude for science (just yet), it is because they are a constant reminder of our failure.

“Did you try consulting another doctor? There is this doctor who makes women pregnant with twins.” That was the best. I wish getting pregnant was contingent on women’s awareness of how reproductive systems work and how each body is different. As if the IVF industry should add “He/She can get you Twins” to fertility doctors’ bios.

“You need to pray for St. X and the virgin Mary. I will light a candle for you and you need to have faith that they will give you what you want, as they did for me.” Me reaching out to the Divine was a bumpy ride. It started with a renewed faith and ended up with me burning all my religious items and books in our backyard. I still replay the video I took of the ashes. I thought they captured my feelings quite well.

“Don’t blame the public health system where you grew up. It is just fate.” FATE. The definition of fate is “the development of events beyond a person’s control, regarded as determined by a supernatural power.” I just think they need to add “screwed up” development of events.

Then come the triggers: seeing children’s pictures; Mother’s Day; pregnancy announcements; birth announcements; baby showers. And, you are alone, again.

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Some of us navigate finding meaning out of the pain, others decide that it is just random bad luck. Whatever the journey is, it is an isolating one.

Primary Ovarian Insufficiency / Early Menopause

When I was 35, I remember visiting a random OBGYN who mentioned, in passing, egg freezing.

Back then, I had career stability on my mind, questions about belonging (still do), and a breakup to deal with. A lot on my plate if you know what I mean. How can this doctor give me some advice on how to preserve my ability to create a new life when I was struggling with my own?

“Well, now you say that, but when the occasion happens, and it will, you might regret it”.

I saw my peers giving birth at 40 so I would have thought this is the norm, and why would I be the prey of fate, or of the superpower in which everybody had faith? The closest I got to sexual education at my school was that women have periods, and they need to use pads/tampons, yet in my part of the world, we are raised to reproduce and be mothers above everything else.

Hearing about a family member or a distant relative not being able to have children was always “someone else’s story”. Someone that is pitied but will never be you. In my house, we barely communicated, let alone discussed sex or infertility. Discovering that my mother had DoR and her menopause came at 38 is a story I came across randomly when I investigated why my responses to IVF cycles were exceptionally pathetic.

Yet, a few years later I find myself in a fertility clinic, belly bruised, hanging on a rope, waiting, falling apart, piecing myself, injecting, falling apart, swallowing a scream in the bathroom at a party, shutting the doors on my loved ones, pressing my hand on my heart to stop a panic attack in a work meeting, washing off an insensitive comment with a polite smile, torn between happy for my friends who won the fertility battle and feeling envious…receiving multiple diagnoses…looking in the mirror with disbelief at who I have become…and repeat.

Then my period stopped at 40.

“Is it Primary Ovarian Insufficiency (PoI)? Just tell me a diagnosis. Rip the bandaid off.”

“Well, PoI or PoF (as in Failure) happens to 1% of women under 40 and 5% between 40 and 45,” My third doctor said.

“Does this make me a 2.5%? I mean, I knew I was special, but THIS?!” Then silence.

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In my part of the world, we are raised to reproduce and be mothers above everything else.

Living Life After Multiple Miscarriages

I still remember the “hush” during my fourth ultrasound. It was the third time I got pregnant naturally (at least I know I can!). I have not slept for two days from a terrible migraine. I knew there was nothing to celebrate when I laid down on the clinic bed.

“Something is wrong, I discharged some blood”. It was the same nurse who detected a strong heartbeat two weeks earlier and cheered “It all looks good!”. Mohammad (bless his toxic positivity) was confident as he had done this for 20 years and he knew (according to him) when a pregnancy is viable and when it is not. But he does not know my F ovaries. And I wanted to punch him in the face.

And, I asked “There is no heartbeat, right?”.

“No…I am sorry”, he said.

“It is ok”, I replied. As if I wanted to add “Don’t worry”.

I still think of that “hush” ultrasound. I still wonder whether Mohammad was disappointed with me, or with his over-jubilation. I wish I could ask him.

June 4, 2022, I am 41, and not the same. People overemphasize healing after losses. But healing implies wounds are sealed, the sad wave has passed, and that you have found the resolution.

The truth is, we travel with the baggage that this experience (similarly to any loss) brings to our life, and the colors vary for us all. I carry with me a spectrum of intense emotions, ranging from confusion, anger, trauma, to humbleness, and empathy. I see several versions of me conversing at night, and barely reconciling. We don’t heal, we manage the colors of a particular rainbow, most of which are dark, and accept it as a new comrade in our daily battles. We don’t heal…we transform…we encounter the ugly and the beautiful at the same time.

And it continues.

I look at who I have become, and the sight of me reminds me of when my father took us to eat ice cream in West Beirut, for the first time. In 1990, when the violence of the civil war in Lebanon came to an end, my father took us to a side of the capital that my (religious) community was afraid to access. He said that before the community tension escalated he used to eat ice cream in the best shop ever.

Something about the images of rubble, laying there in the smoke reminds me of me.

Rage, death, old historical buildings of Beirut laying there like an open scar, waiting to be picked. Some pieces remain viable, and others became dust in the wind. I rolled my dad’s car window down; the Mediterranean breeze brushed my hair and cooled my anxious face. A physical face that I will never give birth to. I wondered about what happens after death and destruction. Is peace and reconciliation an option after so much anger?

I think of the cool Mediterranean wind on that day my father decided to indulge us. That powerful silence in a post-war scenery. That blank ultrasound screen. Me sitting outside that clinic after my fourth miscarriage, in tears, looking at my wedding ring…That ice cream.

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We transform…we encounter the ugly and the beautiful at the same time.

We don’t heal, we manage the colors of a particular rainbow, most of which are dark, and accept it as a new comrade in our daily battles. We don’t heal…we transform…we encounter the ugly and the beautiful at the same time.

Q & A with Allison, Founder of Miscarriage Hope Desk

How many weeks were you when you miscarried?

The overall pattern was between 6 to 8 weeks, according to what the calendar indicates, but on two occasions the fetus was smaller than what it should be.

Looking back, what, if anything, do you wish you would have done differently?

I do not like to have regrets. I look at things as always having a leading context to them. That is what makes our journey unique. But, I wish I had the energy and bandwidth to allow my husband to grieve and myself to be vulnerable early on. Accepting that we cannot be the over-achievers that we are, and that we are not invincible, unable to control everything, and vulnerable, is the beginning even if we realize it at the end.

Anything else you would like to add?

It takes a lot of courage to put myself out there. But I want to tell girls and women that fertility assessments are worth considering early on. I wish every public health system in the world included AMH assessment before 35. Science has evolved, yes, but our systems did not integrate early warning signs to prevent what is easily avoidable. 

Connect with Darine E. H.

Instagram @darineelhage

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