So a (not so) funny thing happened at this morning’s monitoring appointment. But, since I’ve largely been AWOL lately, let me back up.
We’re in the midst of a Gonal-F injectables IUI cycle. This, of course, comes on the heels of our most recent failed Gonal-F timed intercourse cycle. And, in the midst of our decision that we’re finishing out the year with treatments — IUI and then one IVF — and then we’re calling it quits for good with the whole TTC ballgame. So, to say the pressure is on a little is a bit of an understatement. After responding decently on low doses of Gonal last cycle (2 follies created in response to 7 days of 75IU and 4 days of 112.5IU), this cycle has been a total mindfuck. I’ve done 5 days of 75IU and 5 days of 150IU and still have no lead follie(s). My estrogen is going up and down like a yo-yo and my LH is being predictably unpredictable.
Just to make life more exciting, it seems I’ve suddenly developed strong side effects to either one or both of my current meds (Gonal and Lupron) that I didn’t really have last time around. Last cycle I had a bit of a headache, this cycle I want to carve my brain out with a mellon baller just to get the pain in my head to quiet for a moment. Last cycle I felt a wee bit emotional, this cycle I literally go from calm to catastrophe in a matter of seconds. On Friday, I had what I presume to be my first ever panic attack. I couldn’t get the lid off of my sharps container, I threw it across the room, and started crying and convulsing uncontrollably. As I felt my mind leave my body and began to watch myself from outside the hysteria, Mr. But IF dutifully packed me into the car as we started our long drive down to the in-laws for the holiday weekend. Slowly, everything went numb. I couldn’t feel my lips, it felt like a million tiny needles were ballet dancing across my skin, I couldn’t catch my breath no matter the effort I put into breathing, and the tears kept flowing. It was terrifying. Totally fucking debilitating. And, the entire time, I was powerless to stop it or to stop the growing panic setting in for dear Mr. But IF. A little over an hour into our drive I caught my breath, found a teensy bit of mental clarity, and Mr. But IF bought me ice cream. And, like that, it was over. But I’ve been clinging to the edge of a cliff ever since. Not ever the best place to be, but even worse when you have no idea what you’ll find at the bottom.
And, in a nutshell, this was the baggage I brought to my monitoring appointment this morning. So, when my least favorite NP walked in I braced myself and suppressed the inner grimace that was fighting to come to the fore. As she went about aggressively probing around in an attempt to find my right ovary, the grimace surfaced. I’ve had hundreds of trans-vaginal ultrasounds over the years, but never once have I felt as much pain as I felt today. She pushed, she pulled, she twisted, she angled… she even took the wand out and tried to find it abdominally. Nothing doing. So, at the end of it all when I was informed I had two 11mm follies (barely worth measuring) on the left and a completely missing right ovary to show for 10 dutiful days of injecting myself with psychosis-inducing crap, I lost it. And, by that I mean I totally fucking went bat-shit crazy.
As I’ve explained before, I have issues with my clinic. Actually, I’ve had issues with both of my clinics. My first RE – a one-man-show sort of practice – redefines the word arrogance and had an office staff that was so totally inept that they ultimately caused me to leave the clinic in a blaze of curse-laden voicemail messages, canceling my first planned IVF and accepting a job 2 states away in the process. As awful as that sounds, I’ve been finding myself missing that very same clinic as I’ve endured the trials and tribulations of my new mega-practice. I had come to view my old RE as your local neighborhood Hallmark franchise. Yea, they are over-priced, but you keep going back for the nostalgia (I always got a Hallmark Christmas ornament growing up) and the desire to support the familiar group of little old ladies that work there. The new practice? It’s Wal-Mart. Equal measure “Always low prices,” “Why can I never find someone to help me?,” and “I totally know I’m going to leave here wishing I’d gone somewhere else.”
As I commenced the world’s finest showing of shit flipping this morning, I let all my frustrations out. What started with a simple, “So when do we actually cancel this pointless cycle? I’m sick of wasting my time and my meds on this train wreck!” became (a likely much less coherent version of) the following:
I’m totally done with your practice and the revolving door of NPs I’m constantly subjected to. I’m sick of none of you knowing shit about me, ever explaining a damn thing to me, and constantly asking inane questions and offering demoralizing, uninformed, trite advice. I’m convinced that none of you have ever once looked at my chart and, as long as I keep paying, you’ll keep running me through this conveyor belt until I loose my mind, give up, or die. And, I don’t even think you care which one of those comes first.
Did I mention I threw a tantrum? Cause, yea, I did. And, lest you think that my assertive, often emotional blog voice is the same as my often reserved but skeptical and analytical feet-in-the-stirrups voice, I should probably say I never act like this with my doctors. I often don’t trust them, but I do acknowledge how totally dependent on them I am for my care and treat them with a level of professionalism and calmness that, quite frankly, they don’t often deserve. All this is a very long way of saying that what transpired this morning was abnormal. Really, really out of character.
As my rant continued my formerly least favorite NP transformed before my eyes. This woman I’ve quietly hated for months due to her rushed and nonchalant approach to my situation, suddenly changed. I swear her face softened, her voice lost its usual sharp edge, and she physically relaxed as she stopped her mad rush to get out the door and onto probing number 20 of the day. She turned back around and sat on the stool to talk to me. And, even more importantly, she started to listen to me.
Through the tears I recalled my history for what felt like the hundredth time. But this time, she started to hear it. She opened my chart and started going through it – commenting on what tests I’d done there, what tests I’d done with my old doctor and asking questions about prior diagnostic procedures and the paths that led me to all my diagnoses. Somewhere along the line I told her that both my emotional stability and my fears of a resurgence of my mild endo were playing into our decision to be done come 2014. I explained what I’d been thinking but barely able to express even to my husband in the past months. Namely, that my hallmark endometriosis symptoms (chronic constipation, pain, heavy bleeding, intense menstrual cramps, etc.) appear to be coming back and that has me terrified. I told her what I remembered from my post-op report with my old RE, the one who had excised my endo in February of 2012, and explained that surely the records the old clinic had sent to them contained more detail than my recovery-room, drug-addled mind could ever recall. She went into my historical records, found the post-op report, and started to read. Despite the gigantic three-ring binder I maintain that comprises the whole of my medical history for the past 4 years, I’d never seen the surgical report. I wasn’t remotely prepared for what came next.
She read it aloud. I recall phrases like, “right fibria obliterated,” “right ovary encapsulated in adhesions with evidence of torsion,” “cul-de-sac decimated,” “extensive scarring,” “retroverted uterus,” and “bowel affixed to left pelvic side wall.” I wish I had requested a copy of the report, but I was in the midst of having my world turned upside down. I still don’t feel like I know which way is up. You see, my old RE, the same RE I’d been sorely missing these past many months, had simply told me my endo was “quite mild” and posed no cause for concern moving forward. Following my lap we happily did two clomid cycles (1 BFN and 1 chemical) and it was only our declining patience and his refusal to do injects without IVF that actually prompted us to move down the IVF path this time last year. He didn’t recommend IVF, he basically said Clomid may work, but if we cared more about getting pregnant quicker than getting pregnant cheaper then IVF would be a good option. After all, my endo was “so mild,” my tubes “completely clear,” and my prognosis “nothing but positive,” that there was no medical cause for concern.
The report I had read to me this morning – a full 17 months after the surgery that generated it – doesn’t even exist in the same universe as those unfounded, optimistic platitudes I had lobed at me back then. The NPs jaw started to drop as she formed the words to read them aloud. When she was done she turned to me and said, “Honey, your entire right tube and ovary are completely shot. I’m not surprised I couldn’t find your ovary this morning. I’m afraid your adhesions are back.” She continued with, “Knowing this, your pregnancy in December was so unlikely. You must have ovulated on the left and had one stubborn embryo.” And, finally, she said, “I’m so very, very sorry. You are right. Someone should have caught this; someone should have read this before now. Had we seen this we never would have pursued the treatments we’ve been pursuing. You need another lap. And you need IVF.”
In an odd way, it all was kind of comforting. This is a dance I’ve become so familiar with over the years. I report my concerns to my doctors, they dismiss me with the lowest common denominator answer, I do my best dutiful patient act and follow their orders, I become increasingly miserable, I reach my breaking point (physically, mentally, or both), I push the issue, and I finally start getting answers. This is my Hashi’s diagnosis all over again. Hell, this is the path that led to my initial lap all over again. In late 2011 I terminated a suspected ectopic, in early 2012 we were blindsided by the news that both of my tubes were blocked. At my consult after that failed HSG the doctor suggested that it was likely a “false positive” initiated by cramping or “casual debris” and merely suggested another HSG (this time under sedation). I went home and pondered my options, discovered my aunt had endo (thanks for telling me earlier!), went back to the office, demanded a lap, and found I indeed had (supposedly mild) endo. Present problem, languish with problem, be ignored, reach breaking point, demand more than simplest answer, find validation in being right, and welcome in new anger and disgust at the fact that you’ve been left languishing for so long. Rinse. Repeat. It’s odd when joy becomes a prevailing emotion in response to repeated discoveries that yet another part of you is broken.
Mr. But IF is furious and quite possibly planning a murderous rampage down to our former home state to “chat” with our former RE. It will likely involve a baseball bat, or hammer, or maybe one of my bruiser cousins. (And, to any law enforcement types reading this, please consult the definition for hyperbole.) I, on the other hand, feel more hope than I have in a long time. I’m angry, but I’m angry and armed with answers. And those answers are more empowering than even Mr. But IF can fully appreciate. Today someone gave me a window into my fucked up body and acknowledged my pain, confirmed what I thought to be idle worry, and validated our path moving forward. My anger stems from the fact that, yet again, it was a totally uncharacteristic, unprofessional meltdown of epic proportions that initiated these revelations. But, as far as the other elements of the story, I’m oddly zen in this moment about it all. Talk to me in an hour.
So, what’s the plan? We’ll continue this mindfuck of a doomed IUI cycle because, after the shit these meds have put me through, I’m totally not willing to pull the plug just yet. I go for another (fifth) follie check Saturday morning. We’ve scheduled my next laparoscopy for August 20, and we’ll commence our first IVF as soon as I’m recovered from the surgery. And, with the toll my work has been putting on me lately, I’m almost happy for the lap. It’ll be a vacation that even my boss can’t talk me out of taking (which has happened to every other vacation day I’ve tried to plan this summer so far). And, my amazing mother-in-law will come up for the surgery since the hubs will have to work and be unable to drive me to and from. I really am amazingly blessed in some ways.
The even bigger picture plan moving forward is that I’m going to stop accepting half-assedness (hell, quarter-assedness) on the part of my new clinic. Every visit I have moving forward will specifically be with my formerly hated, now much respected NP from this morning. (Apparently, I should have magically known all along that I could “simply” request an NP by name each time I appeared at reception if I wanted to have the same one every time!) I also have been assured that the doc is always at my disposal whenever/however I need him, and that if anyone ever gives me a hard time or doesn’t treat me with the patience I need and deserve I’m to report it to my new BFF NP. Fences aren’t totally mended (I mean they did totally fucking practice medical negligence for the past 8 months!), but for once I actually feel like we are moving in a positive direction. You have no idea how good it felt to hear the NP say to me, “We dropped the ball. I’m so very sorry for this and you have every right to be furious. I know it makes none of this feel any better, but I think sometimes we detach ourselves from all that is going on with our patients as a coping mechanism. I know I do. It’s hard to remember sometimes when you are doing 20 or 30 or 50 monitoring appointments in a given day, that this appointment is your only appointment and you need us to be there for you 100%.” The latter part of that paraphrasing does go a long way toward making the “we fucked up” part of the statement a lot more palatable.
Or, maybe the Gonal’s made me soft? I mean, it’s certainly been adding fluff to my mid-section, so why not my heart as well?
Not when, but IF 