A Journey into UnMotherhood
On my path to get pregnant, I realized I didn’t want to be a mother.
I am sitting with a heating pad strapped around my belly, eight months post-op. I spend a majority of my time trying to manage my pain — pain that is just a shiver in the womb some days; pain that can be like overblown period cramps (even when I’m not menstruating), pain that landed me in the emergency room ten months ago. It lingers, transforms, gets loud and then is quiet, but in more recent days I still feel it tucked away inside of me.
I had my first period at thirteen, they were irregular and infrequent, maybe I menstruated three or four times a year, maybe I would bleed for a day — maybe ten days, maybe more. When my mother brought me to the OB-GYN at 15, there was no real exploration into why my cycle and my bleeding was so abnormal, or any investigation into why my cramps would keep me in bed and out of school for days. Without any sonograms and additional tests, the doctors just said that I was underweight and young, that my period would eventually regulate as I got older. Even when I protested that I knew something was wrong — my doctors retorted that I “didn’t know anything yet,” and to worry about such things when I was ready to have a baby, then gave me a prescription for birth control and sent me on my way. At 36, I got off of birth control, and I finally learned about my reproductive health and what that meant for my reproductive choices.
My family has been blessed with three beautiful additions. My brother and sister married their spouses within a few of months of each other, had their first babies a few months apart, and my sister recently gave birth again. I am the oldest, I married well after my siblings when, according to the family matriarchs and cultural norms, I should have been married first, many years ago. They were all married in Bangladesh barely out of puberty and had near grown children by the time they were my age — and after I tied the knot, I was bombarded with even more questions and comments about when I was going to have children, why I didn’t have kids yet, why was I still waiting, that I should be worried about “my time” running out, that I should have had kids in school by now, that I am going to be so old when my kids grew up, that my husband will become impatient and leave me for someone who will give him children.
My OB-GYN at the time kept reminding me that I was approaching “advanced maternal age,” that I would have a geriatric pregnancy, that I would be high-risk if I didn’t start trying to have a baby “very soon.”
What would being a mother entail of me, anyway? My husband and I were living amongst unpacked boxes from when he had moved in two years prior, nestled between a mountain of unopened wedding presents, with nowhere to put anything. If we were maybe going to have a baby, where would we put it? I sold my New York City apartment and we moved.
The pandemic hit three months after we closed on our house. I couldn’t get in touch with my OB-GYN to renew my birth control prescription after leaving countless voicemails and sending multiple emails, and no office near my new home was seeing new patients either. I thought maybe it was finally time to stay off birth control and start the pregnancy journey by having my body and hormones regulate. My body, however, did not regulate. I didn’t have a period for months. When I was finally able to see someone, I expressed my concerns, which were dismissed as a normal occurrence coming off hormonal birth control. My hair fell out, I blistered with painful cystic acne, where I would feel fleeting pin pricks over the years, that were always small nuisances, transformed into a persistent ache in my lower abdomen, becoming exponentially more severe as the months passed.
I got a referral for imaging. The sonogram revealed bilateral cysts and fibroids. I then went to a reproductive endocrinologist to be tested for polycystic ovarian syndrome. There was no clarity or a definitive path to a diagnosis of PCOS for me. I didn’t have hirsutism, my weight did not fluctuate, my androgen levels came back normal, as did my cortisol levels, and I wasn’t insulin resistant either. The only indicator of polycystic ovarian syndrome was the high AMH (Anti-Müllerian Hormone) levels in my bloodwork.
I checked my luteinizing hormone levels twice a day, logged my symptoms and bodily changes for trends, I overhauled my diet, inadvertently lost some weight, took many daily vitamins, and went out for hour-long walks with the dog to offset the effects of PCOS — then I finally had a period. I was regular for three cycles. My new doctors were confident that, despite being diagnosed with PCOS, I wouldn’t have much difficulty getting pregnant, and I thought, maybe I’ll revisit this conversation later, after my cycle was regular for a while longer. But, my period flow was scant and light, fatigue had me sluggish, my cramps once again were crippling, and I was immobilized for days.
I was only getting concerns about my health primarily because of how much it impacted my chances of having kids, and secondarily because I was in pain, chronically exhausted, generally feeling awful, and that my quality of life was suffering. Who I am, what I enjoy, my reservations, my fears, my ambitions, my talents, my wants and hopes, didn’t matter because I was reduced down to my uterus and my ability to make a baby.
I was sent texts and emails with information on egg freezing, IUI, IVF, surrogacy, teas to drink and supplements to take, from well-intentioned friends and family. I was confronted with commentary about not having kids yet by coworkers on zoom meetings that I forced myself to laugh off and smile through.
In the meantime, my uterus was x-rayed, I had genetic testing done, and fourteen vials of blood were taken during one visit to send out to be tested for things I cannot even remember. My husband was going through his own series of tests by my doctors so that we qualify for the next step in my fertility treatment. I got a letter from insurance granting approval for IUI and messages left on my phone from my doctor’s office to call them to schedule my first round. With all my hyper vigilance about my diet, tracking LH surges, and daily logs of bodily changes, I did not call my doctor back to schedule that appointment, and not once did I even try to get pregnant.
My fourth cycle did not follow my previous pattern. I had an LH surge on the day that my app tracker predicted. I had horrible cramps, nausea, and just couldn’t find the energy to do anything, but no period. A week later I had another LH surge with double the amount of hormones, an unbearable pain emanated from that spot in my abdomen shot through me. I couldn’t breathe, I couldn’t stand, I nearly threw up on myself and my husband rushed me to the ER.
My blood pressure was high, I was given pain killers intravenously, a pelvic exam and sonograms revealed that I had a cyst on my right ovary, another fibroid, also likely a ruptured cyst. My blood work revealed an overactive immune system even though I was not “sick.” When I went back to my reproductive endocrinologist’s office, they confirmed the growth of a new cyst. Although I was about to have my period any day now, albeit over a week late, I had to start birth control again right away and to come back in three weeks to see if the cyst responded to the hormones.
My doctor suspected endometriosis, which could not be diagnosed through routine pelvic exams or sonograms. I needed to have surgery in order to be diagnosed. “What do you want to do?” she asked.
“I can’t even think about getting pregnant until we figure out what’s going on with me,” I said. “I’ll do the surgery.”
She scheduled me for a hysteroscopy and laparoscopic surgery.
For more than twenty years, birth control masked my symptoms as the endometriosis developed. I don’t know if I had been routinely dismissed because my doctors were biased towards women of color, consciously or not, or maybe because there’s not much research devoted to women’s health, even less insight for obscure illnesses like endometriosis… maybe a combination of both. What I do know is that on average it takes seven years to diagnose endometriosis from the first onset of symptoms until confirmation of the disease — and there I was, after two decades, ready to be cut open and explored.
I underwent a hysteroscopy to biopsy endometrial tissue, with four ports and three incisions, in order to undergo operative laparoscopy to diagnose endometriosis. Doctors also performed fulguration of endometriosis and lysis of adhesions. In recovery, my mother asked the nurse what this meant in terms of my ability to have children, hopeful that she will have more grandchildren. I was wheeled down in a gurney, and my mother tried to reassure me, through IVF, I could still have babies.
My first postoperative visit confirmed endometriosis on the outside of my uterus, bladder, and intestines, with likely growths in the back of the uterus, along with polycystic ovarian syndrome. Infertile without intervention. A wave of relief washed over me because I couldn’t get pregnant without my doctor’s help. That was my confirmation. My doctor reaffirmed that I have a very good chance of getting pregnant through IUI or IVF and asked how I wanted to proceed. I was honest, I confessed, “I just want to treat this disease. Nothing more.”
She gave me a prescription for Danazol to treat the endometriosis, and for my following visits, she did not bring up pregnancy once, and only focused on me feeling better.
People feel like they have the right to interject, question my lack of motherhood and make several attempts to embed unsolicited advice and optimism, a phenomenon reserved for childless people, by choice or not. Whenever I was told that I was “getting too old,” or asked repeatedly about having kids, I would always respond, with “maybe some time,” or “my husband and I are figuring it out,” to make the conversation less uncomfortable for them. This only served to invite more unsolicited advice about childbearing and child rearing which made me even more uncomfortable. Just as people who want to be parents are often left unquestioned and are under no scrutiny, their choices unchallenged, choosing not to be a parent is not something that I (or anyone else) should have to justify. I don’t owe anyone a mental buffer or a palatable explanation to ease their discomfort.
I really tried to want to have a baby. The two-year process of moving, getting off birth control, changing my lifestyle, tracking my hormones, and getting diagnoses for my reproductive health was supposedly in preparation to have a baby, but what I was actually doing was mental gymnastics. I believed if I just pushed myself hard enough, go through the steps to have all the necessary checked items in place; stable income, savings for emergencies, 75+ sick days in the bank, a home with space, a supportive partner, a fertility intervention plan — I would begin to feel ready to have children. Instead, I looked for the next thing to add onto my checklist, another reason I wasn’t ready, that it still wasn’t the right time.
Wanting to be a mother is not the default. Going through infertility treatment to become pregnant is not always the next course of action. Being childless is not always the late stage outcome after all efforts have been made and are exhausted. I kept waiting for that moment where that feeling of wanting to be a mother kicked in, and my husband and I would take that leap of faith in becoming parents. That feeling will not happen for me. I learned from my journey into unmotherhood that I do not want to be pregnant, that I do not want to have a baby, that I do not want to be a mother… and it took me this long to figure it out and accept.
