Frustrations

You can’t explain fertility shit to people. You can’t explain anything about it. How even before you start on medications that screw with your brain and your body you feel like garbage because the anxiety of missteps along the way, or unanswered questions, or failing, are always looming and always there. Because it’s related to a biological process that cannot be dictated by time, or sense, or planning, or practicality, or human behavior, or human error.

[I start this entry with the understanding that it is mostly written out of frustration and not complete knowledge of the end result.]

I sit here at work, the evening following my “follow up” visit with the new practice, completely devastated and it feels almost unreasonable that I cannot stop crying. All. The. Damn. Time. The visit went well. My AMH was still low but apparently that isn’t as indicative of stimulation failure as I previously was led to believe. And there were 10 antral follicles on ultrasound. Huge improvement from the measly four seen on outset the first time at the previous center. The doc could not tell me whether everything in the first “run” was all fluke, or whether I will continue to be a poor responder as some “just always are,” so the plan is to proceed with estrogen priming, followed by stimulation cycle.

The main issue is that although I did everything to anticipate my own needs leading up to this stimulation cycle (every two week messages to the practice, asking, pleading, and almost begging for things to do so that we could all be ready), I was told to sit tight and plan for a March stimulation cycle.

I think it would be accurate to say that I have high expectations of people around me. At work I take pride in doing a thorough job and crossing t’s and dotting i’s and holding myself accountable to a job well done. I have learned to adjust expectations because not everyone has the same work ethic and not everyone’s style is quite the same. That is both the beauty in human-driven medicine, and also the beast. My own meticulousness is mine alone, and expectations of situations, and work, and deadlines, need be tempered for things that do not and can not all affect me in such personal ways. Unless it is utterly personal.

In anticipation of this stimulation cycle I reached out no fewer than four times to make sure everything and anything leading up to beginning stimulation was properly prepared. Today I learned that sitting tight and mentally preparing for a March stimulation cycle was only to learn that the new practice seems to have dropped the ball.

Apparently there are other boxes to check (financial planner, nurse appointment, pharmacy appointment, mandatory psychology appointment, consent signing appointment) that all have to be completed prior to starting a treatment cycle. These are boxes that as a medical provider I understand why they are necessary for this intricate and highly emotional (and expensive) process, but I also know exactly what they are going to ask and say to me. I may be new to this practice, but I am unfortunately not new to the process. These administrative requirements needed to be delineated and requested from me weeks ago, to be completed so we could be ready to roll when the time came.

That time apparently is today. And it’s now come and gone.

So I sit here tonight, on the exact day of my cycle that is appropriate to actually start tracking ovulation to anticipate when estrogen medication prime needs to begin, likely in one to two days. But I cannot start any of that because the administrative approvals have not been cleared. It’s madness. It’s nonsense. It’s administrative bullshit that I have absolutely zero tolerance for. And it’s precisely the type of non-transparent non patient-centered nonsense that I chose to leave the previous practice for and made very clear on initial consult here that I could not do it this way again.

But what choice do I have? Waiting patiently is the antithesis of my personality. Reliance on other people is the opposite of how I live my life. And yet independence and autonomy and competence when it relates to a biological process that is completely not in my own control and requires other people, and resources, and human behavior, and yes, human error — independence and autonomy is just a fallacy.

I think about my patients, and about families who have no medical background whatsoever. Here I sit, with enough knowledge to know some questions to ask, to urge forward a process that I have limited but not zero experience with. And this bullshit still happens with me. I’m not suggesting I should never have to deal with incompetence or frustration. The illumination of a brief glimpse into the situation that my patients and families must encounter on such a regular basis is just more than disheartening. I am educated, financially independent, have health insurance (through a separate non-employer plan) that will cover my needs, and have wherewithal to advocate for myself — just imagine how lost folks must be in this maze of craziness without any or all of that privilege.

In the past four days, I’ve been tracking my ovulation to determine when to start the priming cycle — if I hadn’t missed the window for tracking. I cannot imagine how many pee sticks this practice, or any practice, receives on a monthly bases, and though I do not feel 100% confident in the results, this morning I was reassured that I should consider the pee stick positive for LH surge. This means that in two days from now, I will start attaching estrogen patches to my skin to prime my body for the stimulation cycle and prevent asynchronous follicle growth. This is what happened in the failed cycle. One follicle grew while four others just withered and failed. Not enough at this point in my life to go through an anesthesia procedure for one follicle.

Estrogen priming starts before the next cycle to rev up follicles into “hey, get ready to do some work”, but sometimes one follicle can start pulling ahead with asynchronous growth and becomes FSH hormone dependent and basically steal the hormone and growth from the others. So estrogen will be followed by an injectable medication with the purpose to shut down the body’s ability to make FSH. The objective is that any early discordant follicles will be starved out for a couple days and killed so that when the actual stimulation cycle begins, there will only be follicles that are in synchrony with each other, and give a better chance of stimulating more synchronous follicles together.

A friend also reached out to offer some unopened, unexpired medications from a friend of hers and contained in the bags was an index card with a personalized note. These medications are worth thousands of dollars and the entire process is such a mad situation. Even just my friend reaching out to offer her friends medications and then personally driving over to deliver them is just so thoughtful. I will quote part of the note:

“This shit is hard and a total emotional rollercoaster so don’t forget to go easy on yourself. …I’ll be sending you positive thoughts that things go smoothly for you and that you get whatever outcome you’re hoping for. …Good luck and from one hormone addled chick to another- you got this.”