059: Keep Mum About It

On infertility and IVF, and the silence that surrounds it

Greetings! For the 1.5 readers who may have been wondering about the abrupt hiatus of Journal entries over the past month, I have not been living la dolce vita, splashing about in the Trevi Fountain or dining on Italian fare alongside fellow Americans at Da Adolfo, but have in fact been right here at home in New York City, emphasis on at home.

My last entry was a quippy number about dressing for the sweltering heat while on my period and chuckling my way through the disappointment of learning that I was – once again – not pregnant. The following week, my husband and I had an appointment with a fertility specialist. Women over the age of 35 are encouraged to see a doctor after six months of unsuccessfully trying to conceive. We had tried for three, and I was anxious to confront any potential issues sooner rather than later. Had I known better, I would have seen a specialist the very first time I was certain I would one day like to have a child, but women are never given this sort of guidance.

At our first appointment with our smart and tough doctor (I am the child of immigrant parents and do not respond to coddling), we were given a run-through of our options and were required to do bloodwork to give a clearer understanding of our health. The doctor performed a transvaginal ultrasound to assess my ovarian reserve, and after months of diligent pelvic floor physical therapy, I'm happy to report that it felt almost less invasive than inserting the tiniest tampon. My reserve was low, she observed, but not alarmingly so. Based on our medical profiles, the assumption was that we just needed a tiny bit of help in the form of a trigger shot to induce ovulation, or maybe even intrauterine insemination (IUI). Ever the cynical pessimist that I am, I was mentally prepared for these forms of intervention long before we had even begun trying.

The final stage of fertility testing was a hysterosalpingogram (HSG) procedure. If you think it must feel as awful as it sounds, you're entirely correct: a dye is injected into the uterus and fallopian tubes to determine their health and induces the worst imaginable cramps while you have to stay still as an x-ray hovers over your pelvis to take images of your insides. The procedure is brief but extremely unpleasant, however our doctor was performing it and I felt well cared for. What I was not prepared for, as someone who takes pride in her over-preparedness, was what would come after.

As soon as the HSG was complete, still cramping and spotting, I was instructed to sit up to have a look at the images. The test concluded that I have a condition called bilateral hydrosalpinx, most likely congenital, which means that both my fallopian tubes are blocked and filled with fluid, making fertilization extremely difficult to impossible. Had I gotten pregnant, the chances of an ectopic pregnancy would have been high and possibly fatal. Additionally, the fluid from the fallopian tubes could leak into the uterus and create a toxic environment for an embryo. I learned this while still dressed in my sad beige hospital gown, my husband unaware in the waiting room.

Trigger shots, IUI, and natural conception would no longer be an option; my fallopian tubes would have to be removed and I would have to undergo IVF to conceive. Not even the apex of my pessimism could have prepared me for this. Before I could begin to process what I was being told, I began to cry. Here I had thought the journey would come to a close, one that had seemed endless with what had felt like speed-dating gynecologists through New York City who would take my pelvic pain seriously, a year of physical therapy with limited results and then searching and moving on to a new physical therapist, getting my husband on board with having a child and recognizing my urgency, all to blindly board a brand new rollercoaster. After going over the results, my doctor said to me, "We're just going to have a baby another way."

What was the locus of my grief? It wasn't one thing in particular, but rather an amalgamation of fears long imagined and those I'd never conceived of. The laparoscopic procedure I would have to undergo would be my first surgery, and I was terrified of losing consciousness and control. I had never once felt particularly attached to my fallopian tubes and had never thought that natural conception was what legitimized one's role as a woman. Yet I felt as though something was irreparably wrong with me, all my inadequacies confirmed, and that I was now less than a woman. I was the outlier. No one I knew had ever spoken about struggles with infertility, none of the generations of women in my family, nor friends, nor acquaintances, which is odd because roughly 1 in 6 people globally are affected by infertility.

The next morning, I awoke believing that the previous day had been a nightmare, but it was our new reality. At the follow-up appointment, another ultrasound was conducted to confirm my ovarian reserve, which was higher than the previous scan, and what our doctor referred to as a "beautiful" number of eggs. It is not uncommon for women to be told that once they approach the age of 35, fertility dives off of a cliff, but according to both my gynecologist and reproductive endocrinologist, my age was not a concern. When I first asked my gynecologist about this, she exclaimed, "Every pregnant woman in Tribeca is over the age of 35!"

The surgery to remove my fallopian tubes was scheduled for the beginning of September, and after a period of recovery we would begin IVF. My treatment would require a small dosage of hormones and my eggs would be frozen upon retrieval. It would be required of us to attend an online class about the IVF process, and optional genetic counseling was offered, allowing us to determine things such as the gender of the embryo, which we declined. The greatest concern while I was scheduling my surgery was that it fell on the same day as a Nine Inch Nails concert we had tickets to. My husband stared at me bewildered.

At some point, I turned to my husband and said, “I guess I’m a Charlotte!”

I am someone who has found solace in knowledge; the more I know about something, the pros and cons, risks and successes, the more comforted I feel. Often this means having the curiosity to investigate on my own, and by the time we were on our way to the follow-up the day after the HSG procedure, I was briefing my husband on everything I could find about bilateral hydrosalpinx, IVF, and alternative pathways to having a child, just in case. What I learned also made me wonder why knowledge-sharing about women's reproductive health is so sorely lacking, when it is the most vital system required – and not to sound too dramatic – in the creation of life. One would imagine that the topic of commonplace complications within reproductive health would arise when we are first taught about it, or that women would be educated by healthcare providers on understanding their bodies alongside their very first pap smears. Instead we proceed with limited knowledge of our reproductive systems and experience fear, panic and isolation when our bodies fail to respond the way we have been misled to believe all bodies do.

Knowledge and awareness with regard to infertility isn't just crucial for those experiencing it, but is also essential to foster empathetic and supportive environments by those who are not. Much of my own fear, panic and isolation is not rooted in what I know, but in what others do not. I had not anticipated a gamut of comfort from older members of my family, given that speaking about sex and reproduction has long been a cultural taboo that has only recently begun to be chipped away at. There is a palpable sense of shame I am aware of that I do not feel myself. What did take me somewhat by surprise was the response I received from friends and family closer to myself in age, which ranged from aloof to uncomfortable. The common thread between them all was the absence of knowledge, and as a result, the absence of empathy.

Speaking to strangers has been one of the greater sources of comfort to me. Frustrated by being unable to reconcile the data and information I was learning about infertility and IVF with what I saw online and around me, I decided to ineloquently share on Instagram what I was going through in hopes of being able to connect with someone who understood. A stunning number of people sent me private messages over the following week: people who had conceived through IVF, their partners, people who were going through similar heartbreak, some who had the exact same condition as myself. These were people who had beautiful and interesting lives, and from the outside, one could never tell that they had experienced such grief. We live in a society, after all, that has determined there is very little beauty in grief and life's trials.

It has taken me a good long month to come to terms with this next chapter. There are still moments when I am gripped with a suffocating grief, and in the first few weeks I would erupt into unwarranted and uncontrollable laughter. I no longer ask myself how this could have happened to me; it happens to more people than we know, but we are not yet at a place where we can freely say so.

The privilege I have in being able to afford health insurance that covers three rounds of IVF and grants me access to intelligent and kind doctors is something that is not available to so many, a reminder that returns me to the real world. I no longer view the basal body thermometer, the ovulation strips, tracking my cycle like an amateur detective across apps, and diligently recording my temperature as a waste of money and time. When I don’t begin sentences with, “My therapist says,” I begin them with, “According to my acupuncturist…”

Talking about it is what has kept me from feeling like an outlier, a means through which I have found connection in the unlikeliest of places: a pious uncle whose frankness made my jaw drop; the facialist I am devoted to but see sporadically; a woman in Australia I may never have the fortune of meeting. I joke to my best friend that I am wearing my, “I”m starting IVF, how about you?” t-shirt.Talking about it, no matter how much discomfort it may cause, has made me realize that things like IVF and infertility are very normal and natural junctures of life.

Some time ago, a woman who had gone through her own struggles said to me, “IVF is the worst club with the best members.” It’s going to be one hell of a party.