Thursday, April 28, 2016

#StartAsking about what causes infertility

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

(Long pause)

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.


  1. I like that you brought insurance into the conversation.

    I don't know if infertility actually gets different treatment from doctors in the sense that every condition usually begins with the lowest, least-invasive form of treatment, and outlier tests or procedures are held for when all other options have been exhausted. IVF is super expensive and invasive, so 6 rounds of IVF is a lot of money/pain/emotional stress. But 6 tries to treat a problem? Would we say 6 rounds of chemo is unreasonable? I have a friend who went through years of medications and procedures before they finally diagnosed her with Lyme. She had an unexplained problem, and they essentially threw spaghetti at the wall until they found the solution. So I don't think it's unique to infertility.

    Whereas I think insurance treats infertility differently from other issues. Sometimes I feel like we're telling a scapegoating story, where the clinic is the big, bad wolf. When maybe the issue is not the fertility clinics but insurance and payment issues. If clinics were making these statements divorced from the insurance/payment element, I would blame the clinics. BUT right now, it's sort of like blaming stores if you have to file for bankruptcy when you should really be focusing on the credit card companies that have a ridiculous interest rate. The thing is that we enter the stores just as we enter the fertility clinic, and we have an emotional response to the office because that is where the shit went down. Whereas we don't have strong feelings about insurance companies or credit card companies because they are this big, amorphous entity that we never step foot inside.

    1. You're bringing up so good and valid points here. And, honestly, I can only speak from my experience on this.

      In WA state, there's is zero requirement for insurance to cover fertility treatments. If your employer opts to include that in their package, you're lucky. This means that for many in the state (likely similar in other states where there is no mandate for insurance coverage), it's all out of pocket. And since you're paying for a service, there is incentive for the clinics to push for IVF and to keep patients coming back.

      Following my final pregnancy, I shared with my previous REs my story. They still don't believe that I fit into the category of having autoimmune issues and aren't willing to explore that possibility. In addition, though my MFMs believe I do have a clotting issue, the other doctors don't. So even though there is a recommendation that I be on blood thinners for the rest of my life, I'm not because my current physicians don't see a need. Though they do get jumpy when I asked about hypertension as them not treating does hold them liable.

      As far as the comparison of 6 rounds of chemo therapy, well that's a matter of also being able to measure the effects of chemo. If chemo is working, which they can see, then of course they continue to move forward with that treatment. But after 6 rounds if it isn't? Do you push a patient to continue with a treatment that isn't having any affect? Most physicians I know don't because it's considered cruel. They will instead move to other options or discuss end-of-life quality. In addition, we know a LOT more about cancer than we do infertility. Immunotherapies are having a big impact and there are drugs that we can link with treatment. That and there is a push towards personalized medicine. So there's certainly not a one-size-fits-all approach that we see in the fertility industry.

      The big thing is there needs to be more of a conversation. There also needs to be follow up following diagnosis past family building. For the most part, that isn't happening.

    2. "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." Totally agree, Cristy. It's insanity that clinics are allowed to keep selling one expensive service, IVF, over and over without any medically indicated need.

      Mel: with all due respect, your analogy doesn't make sense. The fact that there is NO regulation in the way that fertility clinics operate gives them freedom to act badly. The dispensement of fertility treatment is almost entirely a cash business and, where unexplained infertility is concerned, it's a spin of the roulette wheel to "prescribe" IVF. One vocal physician critic in the UK compared it to performing open heart surgery on a patient complaining of chest pain. Without a proper diagnosis how can an expensive, invasive treatment be ethically performed? The clinics SHOULD be held to a high standard and deserve to be held accountable to doing no harm.

      Among the biggest proponents of insurance coverage for fertility treatments are the Big Pharma companies (and they're so trustworthy, aren't they?) and the mega clinics that want to grow their markets. I have seen the business plans. There is nothing humane or scientific about them. They are about $$$$$ ...

      Maybe if the industry focus was on more rigorous science and more accurate diagnosis and evidence-based, responsible medicine we wouldn't need to be having this discussion in the first place.

  2. I love this post so much. I hate that you had to endure a journey that left this message so close to your heart, but I 100 percent agree that we need to #startasking more about underlying causes, rather than just jumping into the same bag of tricks.

    When I had my failed cycles, I became increasingly convinced I had natural killer cells. I asked to be tested after my first failed cycle, but the clinic I was at poo pooed that possibility, said it wasn't something they could treat for, and explained they wouldn't even test for it until after 3 failed cycles. Why?!? It was a simple blood test. Why not find those answers out before you ever even begin any cycles? They explained it wouldn't matter, that it wouldn't change my treatment course - but perhaps knowing would have changed MY choices in moving forward.

    I've since learned there is a doctor in Vegas who takes natural killer cells in endo patients, especially, very seriously, and who has a treatment protocol that seems to be working. Reading what he has to say on the subject, I'm even more convinced natural killer cells were the reason for my failed cycles. It doesn't change anything now - I will never pursue fertility treatments again. But it just... it makes me angry. Angry that I didn't have the knowledge to search for a different medical team at the time, and angry that the team I had didn't seem to care about causes so much as just throwing the standard treatments at me.

    On a different note, I have always believed that unexplained infertility would be the hardest "diagnosis" to get. At least with endo, I have some answers - I know why. Not having that would have been incredibly difficult for me, and I'm sorry you've had to go all this time with just a tentative diagnosis.

  3. Thanks for this post. It's not something that is discussed often because people are usually ends focused, reasonably enough. But you are right to point out that cause should affect treatment, for all sorts of reasons. The question is relevant to me because although our IF was explained, the reason we got pregnant isn't, except by the most basic generalities, and it leaves me wondering what our next steps should be and questioning the directions we might be pushed in by the clinic, to which I finally asked to be referred, again.

  4. This post is so interesting to me, because even though I have a diagnosis (PCOS) and my husband has male factor issues, we were told over and over that IVF should have compensated for issues. But it didn't. And it was real interesting to me that later in the process everyone had theories about my lining thicknesses when that was never cited as a warning flag in my earlier cycles. I hate the "persistence pays off" theory, because I did 13 cycles and 10 transfers, and I think I was encouraged to "keep trying" that the "next one could be it" by both my doctors and fertility friends who had been successful, and really it made no difference. Given hindsight, I really wish I had chosen another path earlier in my journey, but I can't change what's happened. We did change things up every couple of cycles, but I felt we pushed our team to think outside the box and if we hadn't been advocates for ourselves, then we might have been in that round peg in a square hole mess. I do think doctors need to know more about causes and really look at each individual case rather than using a cookie cutter approach, which I don't think was always applied to us but at times... yeah, one-size-fits-all. And we never got a true answer on why we were never successful, just several theories. Which is one reason when friends of mine who went through infertility would say, "I don't know if we can do as many cycles as you did," I tend to say, "I'm not sure the way we did it was the way to go, actually." Bryce actually found a study while we were IVF'ing that said that after 4 cycles of not conceiving your chances actually goes down. Maybe technology has changed so that the persistence theory is out there more...or maybe it just benefits the clinics who get repeat patients. Super thought provoking!

    1. Agree! "I tend to say, "I'm not sure the way we did it was the way to go, actually." Bryce actually found a study while we were IVF'ing that said that after 4 cycles of not conceiving your chances actually goes down...or maybe it just benefits the clinics who get repeat patients."

      BTW - Jess, Do you have that study? Would love to see it.


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