Friday, January 24, 2014

Getting back in the saddle. Part II: A diagnosis

Thank you to everyone for the comments and support with my first return post. Again, I recognize, as someone who was firmly in the trenches not that long ago, how difficult it can be to read posts like that one. I'll spare you all the samples of the inner dialogue that happened prior to hitting the "Publish" button, but I will say that this community continues to leave me in awe with the support I receive from all of you. Thank you again for helping me reclaim this space.

Back in 2011, following a full years of negative HPTs and a growing realization my resume for family black sheep was growing due to me venturing into the uncharted territory of fertility treatments, I found myself firmly in the strange category that is "unexplained infertility." When one asks any medical professional about their definition for "unexplained infertility," you'll get a myriad of comments, ranging from "we haven't been able to pinpoint the exact cause of your condition" to "based on our evaluations, there's no reason that you can't become pregnant." But something that isn't talked about it how finding one's self in this category of infertility can be a shameful experience.

I remember all too well the first few times I shared my diagnosis with other infertiles. Though no one ever came out directly and said it, not having a firm reason for why I was unable to conceive left me feeling like somehow my situation was lesser. I remember all too well the pauses and the "oh"s that would follow. Too often, there was the gentle pats and the quick subject changes. It was as if somehow I was simply making up my inability to get pregnant just to be a part of something; that somehow my infertility was solely in my head, easily rectified through IUI or even simply relaxing.

Now, before anyone jumps all over me and begins preaching about how life-changing a diagnosis of endometriosis, PCOS, azoospermia and general male factor are, please realize that I'm not saying that these diagnoses aren't painful. Hell, I put them on the level of a cancer diagnosis as far as trauma. But one benefit that does come from these diagnoses is having a doctor validate that there is an identifiable reason for failing to conceive. And as much as it shouldn't make a difference, the truth is it does.

In the years that followed, with all the failed treatments and the losses, being diagnosed as "unexplained" quickly lead to me wondering if I was somehow sabotaging our efforts. I remember sitting in David's office, sobbing as I confessed the growing guilt about how I believed that I was subconsciously killing our embryos because of an underlying belief that I didn't deserve to be a mother. After all, each time we encountered heartache, we were given an explanation of "bad luck" or "just try again." There was even a moment where someone suggested that taking a break was needed, not for my mental sanity, but simply because all the stress was probably the cause. Never in my life did I hate myself and my body more than that day.

All of this changed in October 2012. Following some gentle pushing from Jay, I finally agreed to seek a second opinion. The truth is, I never expected much out of this appointment. I don't think anyone did. So you can imagine my utter surprise when RE told me those three words I never thought I would hear: "we found something." And though Grey didn't initially believe that an elevated level of Lupus anti-coagulant would be relevant, a repeated result lead to an modification in a FET protocol. And it was with that modification, that one chance of an explanation for all the years of heartache and pain that I found the strength to jump head first back into a final round of treatment.

I've mentioned before about how painful Lovenox injections are. Many seasoned IFers who undergo this treatment are all too familiar with those sharp pains, the burning and the extensive bruising that results. What I haven't talked about, though, is the ongoing battle I had with all of my doctors to stay on this treatment while I was pregnant with the Beats. The first round came during my initial OB appointment once I graduated from Dr. Smile's office. The OB I was assigned to looked completely overwhelmed when I brought up that not only was I pregnant with twins but also doing these injections. Thankfully my MFMs were all too experienced with this medication and were willing to allow me to stay on it, but as the nose bleeds and delayed bleeding from the injection sites began to become more frequent, they did voice their concerns that I was unnecessarily medicating myself with a blood thinner. After all, I didn't have an official diagnosis of Anti-phospholipid Antibody syndrome and my pregnancy up to 28 weeks was going incredibly smoothly. Why subject myself to daily painful injections?

Everyone's tune changed in July. As the data came back that I was developing HELLP syndrome, the dialog about the Lovenox changed. I remember the looks of concern as my MFMs carefully monitored me throughout July 2013, focusing first on my liver and then turning their attention to my kidney function. I remember all too clearly the day I was admitted to L&D, with them ordering a stop to the Lovenox to prepare me for surgery and delivery of the Beats. I remember the ER residents piling into my hospital room, with me becoming an educational tool as no one had ever seen someone with HELLP syndrome where they had time to prepare (normally emergency C-sections are scheduled).

But most of all, I remember waking up the day after the Beats had been delivered and I was being monitored closely in L&D as they were preparing for my body to crash. I remember my MFM, the one who I credit for saving the Beats and my life, coming into my hospital room and after a brief recap of all that had happened and the plan for moving forward, handing me a Lovenox injection. At 6 am PST on July 28, 2013, I was officially diagnosed with Anti-phospholipid Antibody syndrome. And with this diagnosis came one thought:


Finally we know why. And I naively believed that with this diagnosis all the struggle to finally address this would be over.

How wrong I was.

Since that fateful day, I have fought with the doctors at my HMO simply to determine what measures of preventative care I need to take to ensure that all of this be addressed. Time and time again, I've been blocked. Though a Contrast MRI done in October (a lovely experience which I'm still recovering from physically) revealed 4 large masses on my liver, the response has been "let's wait and see." Follow-up blood work that showed I have zero lupus anti-coagulent in my system resulted in a "cured" diagnosis from one OB. A later diagnosis of Raynaud's syndrome due to blanched nipples and vasospasms during breastfeeding still didn't raise red flags, even though one physician did admit that there is a strong possibility that we are looking at the beginnings of Lupus. All of it making me wonder whether these physicians hired at my HMO either graduated at the bottom of their class or somehow managed to obtain a medical degree online. Though with new employment combined Grey and I finally coming to the realization that it's time we upgrade insurance, which will allow us access to more competent medical personal, the reality still is that even with a diagnosis I still am firmly in uncharted territory.

All of this comes back to one undeniable truth: the link between immunity and fertility is one that is most certainly poorly understood if believed at all. Ask many a RE about their thoughts on infertility being caused by an autoimmune disorder and you're likely to get a response about how the data doesn't support this, an accusation of those practicing Reproductive Immunology being quacks and/or even a look of noticeable annoyance that clearly says "not this topic again." In truth, the published data about immunity being causal of infertility is fairly suspect, with authors basing conclusions on data that is far from clear or poorly designed/executed experiments. One classic example of this comes from the PLoS One paper about "Super Fertility," where the authors make a case that recurrent miscarriage is linked to the failure of one's uterus to distinguish between viable and non-viable embryos. Though at first glance to the untrained eye this report is frightening, there are many, many problems with how the authors came to these conclusions: the "control" group is not a healthy population (see Materials and Methods), the decidualization is not uniform (and tends to be wider in the control group than in the experimental group), staining of F-actin is inconclusive, etc. The point being, the research supporting this idea isn't solid.

But just because there's no or poor quality research in an area doesn't mean that there isn't a link. In fact, this idea is one that could open the possibility of more going on then previously suspected. Work from researchers like Lou Guillette, Tyrone Hayes and others suggests that not only is there an environmental impact on one's ability to reproduce, but that the affects are much more global, linking to one's general health.

All these thoughts have been spinning through my head for months now. Grey and I have had multiple conversations, with me throw hypothesis after hypothesis at him and even others to gauge their response. Finally, during a late night pumping session where I was reflecting on my initial diagnosis of simply having low progesterone levels, I finally decided to do an internet search for progesterone and autoimmunity. What I found immediately was a research paper and a review by a young investigator located in Seattle WA.

For those who are interested, I'm more than happy to send you the review. But basically Dr. Hughes makes a case for progesterone having a profound role in regulating autoimmune disease. As I read, the thought that continually popped into my brain was whether my low progesterone levels resulted in my immune system attacking my embryos? After all, all my REs agree that I have an issue with implantation, but the idea that it was due to my immune system destroying my embryos because they were foreign made me reflect more and more on those cycles where I had felt different but always gotten a BFN.

What if all along it was just a matter of raising my progesterone levels an appropriate amount? After all, we now know that my body needed double the amount of PIO in order to reach appropriate progesterone levels. What if there's an environmental component, with my hormone levels being out of wack due to an exposure? What if my infertility is simply one piece of a much larger puzzle, linking to more seriously underlying health conditions? What if all of this is preventable and/or easily treatable, meaning the hardships I had to face would not have to be faced by others? What if? Oh what if?

So, after much debate, I finally composed an email to Prof. Hughes to set up a time to meet and talk about this idea. We're still in the process of trying to work out a time to meet, but I'm hoping the discussion will take place soon. In the meantime, Grey has also been thinking about this issue based on his experience. I can't speak about it too much, these are his ideas and could lead to some amazing development of new technologies, but I will say that when he speaks with colleagues there's excitement.

All of this still leaves me feeling heady. Thinking about this diagnosis, how even with it there is no clear answers. But how there could be. And both Grey and I have the training to explore this. I don't know where it will lead, nor do I suspect this will lead to a huge leap forward with how we treat infertility. But if there's a way that somehow the last 3 years of pain and loss, filled with uncertainty and even questioning my sanity, could lead to something good coming out of it, it's worth exploring.


  1. Goodness. I'm no expert certainly but have often wondered about the "unexplained infertility" diagnosis - wondering if what that really meant is something that is just more difficult to detect is going on. A friend of mine is going through something similar (in her case her eggs are not surviving long enough to transfer but her doc has no explanation as to why that is happening) and I know that not knowing is driving her simply bananas. I personally have a hard time understanding how people can be so blasé in their response to that diagnosis - it not only leaves you with no answers but wondering what on earth could possibly be going on. Anyway - wishing you best of luck in your quest for answers. ((HUGS))

  2. I know with my infertility issues progesterone does play a big role. Even with this pregnancy I had to fight with two clinics to get them to check my Progesterone level because I had the symptoms of it being low and sure enough the lab work showed I was right. They then allowed me to double the PIO injection dosage. I detest that we have to fight with the doctors to get proper medical care. I too wonder where they got their medical degrees and how low in the class ranks they graduated.

  3. This is not at all my area of professional expertise, but having both a scientific background and a history of RPL (with no clear causes, despite thorough investigation except probably from an RI perspective), this thrills me. I'm glad my RE at the time was willing to throw everything and the kitchen sink at it, but it would be great to have some evidence to show which of the multitude of meds we used to get/stay (mostly stay) pregnant may have actually been unnecessary, if any. Explore the hell out of it, please and thank you!

  4. This is so intriguing & I wish you all much luck as you explore the possibilities!

  5. This is an incredibly interesting post. I'm excited to see where your research takes you! I was "unexplained / possible lean PCOS (b/c I had 2 of the 3 characteristics of it)" and they were never quite sure what my problems were either -- though I'm a firm believer that supplementing my progesterone levels post-ovulation made a huge difference for me. Like I said, I'm excited to see where your research takes you!

  6. I completely agree that immunity and fertility are intimately linked. My husband has an autoimmune disease (alopecia) and his severe male factor is unexplained. I have always thought that his body is attacking his sperm, just as it attacks the hair on his head due to his alopecia.

    I'm interested to read more about where your research takes you. If you come across anything about how immunity leads to male factor please send it my way (if you don't mind.) I hope you continue to keep us updated

  7. I am so proud of you Cristy!!!! And so incredibly excited for you, for Grey, for all of us! You are such a ray of light to this community... Thank you! Inspiring!


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