Have you experienced infertility or know someone who has? Was the experience filled with feelings of hopelessness, guilt, anger, or even confusion about what exactly the diagnosis of “infertile” means?
Infertility is defined by the American College of Obstetricians and Gynecologists as not having become pregnant after twelve months of regular, unprotected sexual intercourse. The Centers for Disease Control and Prevention estimates that 6 percent (or 1.5 million) of married women in the U.S. ages 15 to 44 are infertile.
The diagnosis of infertility can be a painful and heavy burden to bear. Because of the weight this diagnosis carries, I’ve often thought that the somewhat arbitrary and black-and-white definition of infertility can sometimes be unhelpful. And perhaps, as this article will explore, it’s not even that accurate.
Through my experiences as a public health professional working alongside OB-GYNs, epidemiologists, and other researchers, I learned about a new way of understanding infertility that I want to share. It’s called “subfertility,” and I believe for some it may be a more precise and empowering way to describe their experience. It truly changed my outlook on how we describe couples who have trouble conceiving or carrying a baby to term.
Rather than looking at fertility as a dichotomous status of fertile versus infertile, the idea of subfertility considers that there is a spectrum of fertile states somewhere between “easily conceives” and “cannot conceive.” So there’s no longer just two states known as fertile and infertile. It’s not an on/off switch. Instead, there’s a vast area in between called subfertile filled with many couples experiencing varying degrees of difficulty conceiving and maintaining a pregnancy.
For instance, say you have a couple that is charting the signs of the woman’s fertility. They have been having intercourse during her fertile window for the past twelve months. However, they don’t realize that the woman has less cervical fluid than what is ideal. Because she isn’t producing the copious amounts of clear, stretchy, lubricative fluid that sperm love, the sperm die before they can fertilize the egg.
Would this couple be considered infertile by our standard definition? Yes. They were unable to get pregnant naturally after twelve months of regular, unprotected intercourse. But they weren’t really infertile; they were experiencing subfertility.
There are many possible causes of limited cervical fluid, and many of them are treatable. The Kindara blog (an app used for charting one’s fertility) lists a few: not drinking enough water, a diet low in essential fatty acids, infrequent exercise, being significantly underweight, vaginal infection, and hormonal imbalance. The couple’s OB-GYN and other health providers can often work together to find solutions for the cause of her issue. Once her health is restored, and there are no other underlying issues, chances are much better that the couple will conceive.
There are many underlying conditions that can contribute to subfertility. Many of them are more complex than limited cervical fluid and include polycystic ovarian syndrome, endometriosis, fibroids, and more. However, there are some treatments for these conditions. And in cases where it is possible to restore and optimize reproductive health to a certain extent, it may even be possible for women with these conditions to conceive naturally or increase the chances of success with assisted reproductive technologies.
Do we really need to attach the “infertile” label to a woman with polycystic ovarian syndrome who hasn’t conceived after twelve months of regular, unprotected intercourse? How would it change her experience if she thought of herself as subfertile rather than infertile at the end of these twelve months, pending further input and testing from her OB-GYN and other health providers? Is subfertile not only more accurate but a more compassionate adjective as well?
Subfertile until proven otherwise. This, I think, should be the new slogan for a fertility clinic.
The Stigma of Infertility
Subfertility is about more than just a definition. The adjectives we attach to ourselves matter. The word “infertility” is often charged with so much emotion and shame. The reason I wrote this article was in hopes that it would bring new understanding and lessen the very real and very painful guilt that so many women and couples face.
I am not trying to get pregnant nor have I tried. My perspective is influenced by my work and research as a public health professional and is different from those who have experienced difficulty in conceiving or the inability to conceive. Although I love the idea of getting rid of the black-and-white way we currently describe fertility (with “fertile” and “infertile” and nothing in between), I wanted to know how this new term would resonate with other women who have conceived or have been trying to conceive with difficulty.
I asked women in various phases of the infertility/subfertility experience: a woman who had successfully conceived, a woman currently trying to conceive, and a woman who never achieved a live birth and is now done trying—about their feelings on this new classification. Some like the idea; others weren’t sure.
Kristi, 36, and her husband tried for nearly three years to conceive while she was in her twenties. First, physicians focused on her fertility. She underwent many diagnostic procedures, including an X-ray test to make sure her fallopian tubes were open and the inside of her uterus was normal (it was not covered by insurance and cost them $1,000 out of pocket). Everything came back normal. It wasn’t until her husband’s semen analysis revealed an elevated white blood cell count that physicians knew to treat his low-grade infection with antibiotics. They conceived shortly thereafter. When considering the idea of subfertility rather than infertility, Kristi said, “It would give women a lot of hope. ‘You’re experiencing subfertility issues’ rather than ‘You’re experiencing infertility issues’ sounds better. It sounds fixable.”
Amanda, 30, has been trying to conceive for the past five years. She shared a similar perspective: “Right now I feel like it really doesn’t matter what you call it. As long as doctors are progressing in finding a solution, which they are for me and my husband, then either word is fine. ‘Subfertile’ does sound more hopeful. But two years ago when we were at a different clinic, and no one could figure out why I wasn’t ovulating, I pinned a lot of this on myself and felt like it was all my fault. Back then I would not have liked to be referred to as subfertile. It definitely felt more like infertility to me.”
Previously, others suggested to me that if a couple is not successful in conceiving, then the term “subfertile” makes it sound like the couple—and especially the woman—didn’t do enough to get pregnant, as if there were a chance of conception or a healthy birth, but they just didn’t do enough. It was interesting to hear that this would have been true for Amanda a couple years ago, although now she is fine with either term. Her perspective on it depends on how close and realistic she feels a solution actually is.
One 43-year-old woman who prefers to remain anonymous tried to conceive for four years and now has stopped actively trying. She said, “I don’t think my treatment plan would have been different, but if I had thought of myself as subfertile, I might have been less surprised by the pregnancies and subsequent losses.” In her case the different terminology would have helped offer a more realistic perspective on the entire process.
All three women used the words “hope” or “hopeful” at various points as they described their feelings associated with the new term.
Amanda, who is also a physician’s assistant, added that she thinks subfertility is a more accurate diagnosis, echoing my sentiments that a couple having difficulty conceiving is really subfertile until proven otherwise. Different researchers and physicians have varying opinions on what point a woman is deemed verifiably infertile, in the sense that a couple absolutely cannot conceive and maintain a pregnancy. This is partly because diagnosis and treatment is a dynamic process dependent upon many factors. These factors include but are not limited to insurance coverage, proximity to quality care, the testing preferences of the particular physician, and the degree of willingness of the couple to undergo invasive, risky procedures. There’s also just a lot we still don’t understand about infertility in general (there’s actually a diagnosis known as “unexplained infertility” for when a physician has ruled everything else out). Thus it’s no surprise that there are differing opinions on this among members of the medical community.
At this point, subfertile is not a term many physicians use; however, I think it could still be valuable for women and couples who don’t want to be attached to the stigma and guilt of infertility.
Trying to Conceive Is a Family Affair
There are many layers to this discussion. At the very heart of it is the individual woman’s and couple’s experiences and the emotional toll this process takes on them.
In her excellent article “Feigning In/Fertility,” Ashley Rittman described her years-long journey of learning the right combination of lifestyle changes and medication to treat her underlying polycystic ovarian syndrome and conceive naturally. She recounts:
“My pregnancies involve an entire office staff and a nurse shooting me in the behind with hormones. I take two pregnancy tests a day for the first eight weeks because I am paranoid that it will go away, that the first forty-nine tests were a fluke. We don’t get attached to our babies until we find out the gender because we’re always told ‘don’t get attached.’ I have PCOS, which means I have about a 40 percent chance of miscarrying each pregnancy.”
She’s had two miscarriages and two successful pregnancies. She now asks if she’s still actually infertile:
“So does infertility lie in the inability to get pregnant spontaneously? Or is it more than that? Is it a culture, one which I am no longer privy to because of my aided pregnancies. I don’t want infertility to define who I am, but I don’t want to feel like I’m not allowed to consider myself a part of the community I’ve spent the [past] ten years being a part of.”
Dilemmas such as Rittman’s show that the term “subfertile” may be a more fitting option for many women. A woman can identify as subfertile whether she ever successfully gives birth to a child or not. It’s inclusive, providing a supportive term for women such as Rittman who aren’t really sure where they are on the fertility spectrum. It’s also flexible, allowing for trial and error, realistic hope, and, most importantly, the understanding that you aren’t alone. You don’t have an “infertile” stamp on your forehead that screams, “I can’t have children naturally!” without acknowledging all your efforts to try.
I invite Rittman, and others on infertility journeys, to consider using this idea of subfertility to describe your experience if it is helpful.
For some, it may not only lessen the burden and stigma of the infertility diagnosis, but it may actually also be a more accurate way of describing the experience.
Photo Credit: Island Moon Photography