Grief for what’s not to be
January 6th was an unforgettable day. The first thing that probably comes to mind for most people is the attack on the United States Capitol. I’m a democratic strategist, so that’s certainly the context in which I remember much of that day — seeing the news break on Twitter, making calls to partners in DC, checking in on friends in the building, and jumping into rapid response with my team. But an unexpected phone call I received that evening has taken up residence in my memory too, like a squatter who abruptly arrived, made camp without asking permission, and now refuses to leave.
My partner and I decided a couple of years ago that we would visit the topic of starting a family after the 2020 election. That might sound weird, but election work can be stressful and absorbing, and it has a way of taking over your life, especially in Presidential years. I knew I would be working plenty of late nights and weekends, and once the pandemic hit, it reaffirmed our decision to postpone any concrete planning until the end of the year. So when the holidays arrived in late December, I decided to have some fertility testing done.
That, too, might sound strange. Fertility testing isn’t usually the first step for couples trying to get pregnant. But in 2015, after several years of painful episodes involving ovarian cysts that landed me in the ER, I was diagnosed with endometriosis. I had experienced the gamut of symptoms for years, but had dismissed them as the normal pains of living in the world as a woman. Before I was diagnosed, I didn’t even really know what endometriosis was. After my laparoscopy, my doctor warned me that it was very likely to affect my fertility and make getting pregnant difficult, maybe impossible. Somewhere between 30–50% of endometriosis patients deal with infertility, and infertility rates shoot up for cases like mine, when patients are found to have deep infiltrating endometriosis, endometrial cysts, and adhesions across multiple organs (some doctors describe this as “Stage 4,” which denotes how extensive the endometriosis is inside the body).
My symptoms improved after the surgery, but endometriosis treatments are limited, and it took some trial and error to find an approach that made a significant difference in my quality of life. I still experience chronic nausea and fatigue, and I still have flares that can be completely debilitating, but my normal is a great deal better than it was, and it’s been years since my pain has led me to an Emergency Room. The biggest change came when my doctor put me on continuous birth control.
“You never have to get a period again.”
It sounded too good to be true. But somehow, it wasn’t. While it didn’t make my symptoms disappear, pain no longer plays the same role in my daily life. I still have my share of bad days, but I have so many more good ones.
A few months before the pandemic began, in the winter of 2019, my symptoms began to worsen. More flares. More pain. More nausea. More fatigue. But I know how much worse it can be when I’m off the pill, which, lest we forget, is sort of a pre-requisite for getting pregnant. Even with my symptoms worsening in the last year or so, things are still so much better for me than they were before I started skipping periods. So rather than going off the pill and subjecting myself to six months of “trying” while fighting the return of symptoms, it made sense to me to get some information first. I wanted some data that I could use to make a decision. Off to a fertility clinic I went.
Fast forward to January 6th. My fertility doctor, who also happened to be a surgeon and an endometriosis specialist, called to give me the results of the tests I had in December. They weren’t good. My ovarian reserves appeared to be very low. The ultrasound revealed no observable eggs in my left ovary, and only three in my right. My blood work showed I had an AMH (Anti-mullerian hormone) of .2 which is considered extremely low. A typical AMH for a fertile woman is between 1–4. An AMH of .2 is more typical of a 49-year-old woman. I am 34.
I asked her what this meant for my chances of getting pregnant.
“We can’t say with certainty. Your birth control is a factor here, so if we tested you again next month we might see a bit of a difference. But given your situation, I’d recommend doing some egg freezing as soon as possible, in case you want to try IVF in the next year.”
“I know I’m asking you to be very direct and that you can’t say with certainty, but it would be helpful for me to understand the statistics. Can you tell me what my chances are of getting pregnant in the next year, without IVF? At least if it’s over or under 5%?”
“Given your history, I’d say definitely less than 5%.”
A lot went through my mind in that moment. That my intuition had always led me to predict this result. That I had known those words were coming. That I had told myself for years that I probably couldn’t get pregnant. I had told friends. That somehow none of those pronouncements had actually prepared me for this. That she works in a fertility clinic, so maybe she was just trying to get a new patient (I have since reviewed some of the literature and put this paranoia to rest). That I had always been afraid of child birth, anyway. That I’d always been able to imagine becoming an adoptive parent, even when I was very young. The memory of my surgeon explaining to me that if I wanted to have a baby, I should try to get pregnant in the year following the operation. If I had seen a specialist sooner, would I have planned things differently? That I wasn’t even really sure I wanted to have kids until very recently. That I’d gone back and forth on the idea. That I’d read about treatments for increasing your egg count. The realization that I would probably never have a baby with my husband’s eyes. And that my husband wouldn’t either. That my reproductive organs had become vestigial. That my body would never do what it was designed to do. That it was irreparably broken. That it was out of my control.
And I felt relief in finally, finally knowing.
You might be thinking that 5% isn’t zero. And that there’s always IVF. Those thoughts passed through my mind too. And sometimes they still do.
But the truth is — my truth is—I’m just not up for putting myself through it all, when the chances of failure are so high, and pain is a certainty. I recognize that’s not the choice that many (most?) women in my situation would make, but it is the one that I am making. I asked about the IVF success rates for someone my age with my history, how many cycles I would need to expect, how many egg extractions we’d need to do. Those odds weren’t encouraging. Neither were the associated financial costs.
Several weeks after the phone call, I got MRI results back revealing that I have a second condition, called diffuse adenomyosis. This means my endometrial cells are growing into the muscle walls of my uterus, causing inflammation and giving it a globular shape. Adenomyosis sometimes co-occurs with endometriosis, and shares many of the same symptoms. This might explain the worsening of my symptoms and frequency of flares in the last year. Adenomyosis typically resolves after menopause, but there is no cure, except for hysterectomy. For me, this news was more confirmation that my choice not to pursue IVF is the right one.
The bottom line is I know this is the right decision for me — I just do. I feel very grounded in my intuition, and that’s fairly rare for me. And yet…to borrow a line from Phoebe Bridgers, I seem to have emotional motion sickness.
Most of the time I feel just fine, but it doesn’t take much for what I’m calling “the baby feelings” to pierce through, usually without warning and on a moment’s notice. I didn’t cry on the phone with the doctor. But I cried on the phone with my best friend an hour later. And I cried watching Private Practice when Madison got her low AMH results. I’ve cried laying in bed at night, and in the shower in the morning. I’ve cried looking at friends’ pregnancy and baby announcements on social media, while also feeling genuine happiness for them. I have been having vivid baby-related dreams. And sometimes I find myself crying for no discernible reason, when some small twinge of emotion gives way to a rush, and the dams just break.
This experience is unexpectedly familiar to me. It’s not dissimilar from how I felt in the year following my uncle’s death. Fine one moment. Crushed by a wave in the next. Knocked over by the smallest reminders.
I guess this is grief. Grief for what’s not to be.
This emotional reaction might feel predictable to some, but for me, it was surprising. I have long thought I might become an adoptive parent. I’ve always known that the issue of shared genetic material would play no role in my ability to love and parent a child. I feel hopeful and good about us landing on a path by which we become parents through adoption.
But it turns out those positive feelings sit alongside a lot of other complicated feelings too. And for now, I’m still processing and trying to sit with those feelings.
Not my strong suit, if I’m honest. But the only way out is through.
March is endometriosis awareness month, and I promised myself I would write this piece and press “publish” before it’s over. I guarantee you that you know women with similar stories. They’ve probably been quietly processing their pain and grief alone, maybe with a partner or a close friend, if they’re lucky. I hope we can normalize talking about it, because we’re sure as hell not going to get more funding into endometriosis research if we don’t (there’s a reason there are so few treatments and no cure). And I hope we can normalize talking about it because it doesn’t have to be this lonely. There are an estimated 200 million of us living with endometriosis, and as many as 100 million of us grappling with infertility.
If this terrible year can only teach us one thing, I hope it’s this: the only way to survive is to take care of each other.
