On a Tuesday afternoon, I found myself sitting on an examine table at my new doctor's office. Sitting across from me was the nurse practitioner, who was examining the blank screen in front of her as the front desk had failed to inform her that I was a new patient. Sighing, she began reviewing the information the medical assistant had given her (height, weight, blood pressure and a complaint of dizziness) before turning to me and asking me about my medical history.
It took only a couple of minutes for her eyes to widen as I got into it. Though the typical questions (Smoker? Allergies? Current medications?) didn't raise any red flags, the question "ever been hospitalized?" opened a floodgate.
Why were you hospitalized?
For HELLP syndrome.
Wait, HELLP? (She takes a moment to look directly at me) And they were able to catch it?
Yeah, I was being monitored pretty aggressively. My doctors overseeing my pregnancy were fantastic.
Why were you being monitored?
Well, because I had a tentative diagnosis of Hughes Syndrome.
Yes. Not everyone agrees with the diagnosis. I didn't fit the classic diagnosis, but there's a number of people who believe it's the cause for my diagnosis of infertility and recurrent miscarriages.
Infertility? Meaning you underwent fertility treatments?
Yes, four rounds of IVF
Well, it's wonderful that the IVFs work!
Yes, we were extremely lucky.
An hour later, I'm sitting in the waiting room of the laboratory waiting for a blood draw. The whole while I'm reflecting on the conversation I had with the NP. On the one hand, I still marvel how far I've come that I'm able to talk openly about our journey through infertility without batting an eye or shedding a single tear.
But there's an underlying element that bothers me. The element of not ever having a formal diagnosis for what was preventing Grey and me from expanding our family. And the fact that when ever I talk about this informal diagnosis and all that happened, I still get looks from many a medical professional.
A diagnosis of unexplained infertility is a bit like a double-edge sword. On the one hand, there's no apparent reason for why the patient is unable to become pregnant. Hope is not immediately smashed with a diagnosis like this, as there's still the chance for a spontaneous pregnancy to occur. And yet, the months and/or years spent trying to get pregnant with no success, only to be given an explanation of "bad luck" is an exercise in insanity. Over time one begins to question whether they are somehow sabotaging their own efforts or if there is some sort of karmic curse inhibiting them from expanding their family. What doesn't help is that the physicians are often clueless as to what is happening, instead pushing for repeated attempts at treatment as a way of fitting a square peg into a round hole.
In December 2015, the New York Times published a piece about a study that found a 66% success rate for IVF following six rounds of IVF. The argument being made was that persistence pays off. And yet, what wasn't talked about is that if we advertised such statistics for treatment for any other disease (diabetes, Alzheimer's, cancer, etc), the general public would be in an uproar about the supposed success. That there would have been a call for reform and reanalyzing how we are approaching treatment. Instead, the take home message to any couple was "try again." Keep doing the same thing at all costs.
Since that day when I was given a possible explanation for what was causing my infertility, I've found myself both relieved and angry. Relieved for having an explanation for why I was living through this horrible trauma. That it wasn't due to me self-sabotaging or some divine curse as I was somehow unworthy to even dream of becoming a mother. No, instead the underlying cause was a biological one. A potentially treatable one. The relief I felt that day sitting across from Dr. Smile still hits me like a tidal wave.
But there's also anger. Anger because my previous REs poo-pooed any investigating in to why I was miscarrying early on during my IVF rounds. Anger because so many people questioned the necessity of the Lovenox I was on up to the day that I was admitted due to HELLP syndrome. And I'm still angry because no one is following up with all that happened.
You see, in the eyes of the medical community, I am no longer infertile. Birthing the Beats cured me of this disease. And any worry that I may have to long-term heal or whether the Beats may inherit this condition has been actively dismissed.
We know all too well that the causes for infertility are rarely cured solely by giving birth. Conditions like PCOS and endometriosis affect the patient on a holistic scale with increased risks for diabetes, cardiovascular disease, sleep apnea, asthma, allergies, chemical sensitivities, autoimmune diseases like MS and lupus. And, of course, there's the potential for cancer. Yet too often, this is overlooked or not followed up on. The underlying causes for these conditions and others like premature ovarian failure (POF), repeat pregnancy loss (RPL) and male factor infertility are not at all understood.
It's time we as a society #StartAsking. Infertility is not a social taboo and not a women's issue. Infertility is a multifaceted disease affecting 1 in 8 couples in the United States, 1 in 6 couple in Canada and 1 in 4 couples globally. Despite this, we know so little about the underlying causes for this disease and how best to not only treat it, but prevent it.
We need to #StartAsking about what these causes are.
We need to #StartAsking for insurance coverage, not only for fertility treatments, but also for long-term health care.
We need to #StartAsking why reproductive health is considered different from an individuals overall health.
And we need to #StartAsking why the focus has been one pushing fertility treatments instead of on research into understanding what is causing infertility. Why there is so little research funding to do so. Because without this understanding, we can't make advancements for prevention and treatment.