Over the years, I’ve sat down more than once to try to write about my experience with my first RE and IVF in general. It’s proved trickier than I thought. Some of it, I’m sure, is that women are socialized not to express certain (negative) emotions. Some of it is that it seems like something I should be over. A big part of it is survivor’s guilt. I mean, I have kids at this point, so it seems sort of ridiculous to complain.
And yet, parts of this story still bother me because they should not have happened. In real time, I was so deeply invested in the process, I couldn’t really dig into considering them, even in my own head. I was all about acknowledging that something had happened, but also sort of glossing over at the same time. At this point, it’s not so much about my personal stuff as entering a conversation about how to improve care for infertility patients in fertility clinics.
I’ve written in a Q&A format, mostly because that seemed easier than trying to form this as one narrative piece.
What went wrong with the first RE?
I’ve mentioned before on the blog that at the first consult with him, I expressed that I understood with PCOS that wasn’t responding incredibly well to drugs like Clo.mid and Fem.ara, it could take some time to get to the point where I was pregnant and that I had a wedding in June (this was in March) that we’d need to work around. He sort of smiled and went “Oh, I think I can have you drinking water at that wedding instead of wine.”
I hate to say this, but while the rational part of my brain was going nope, nope, nope, the sad, worried, fearful part of me really wanted to hear that. Because here was a guy who was confident and felt good about the whole situation. He brushed away my concerns about being able to come in for ultrasounds during cycles because of my work schedule (“We deal with that all the time”).
Things escalated a little when I got a cyst after my first cycle on injected fertility medications, which I hadn’t realized could happen. So I had a cancelled cycle and had to rest on birth control for a month. The next cycle resulted in a huge overstimulation for TI/IUI and was cancelled as well. I was getting concerned because I was going in for ultrasounds quite a bit – which hugely negatively impacted my work schedule, contrary to my doctor’s reassurances at the initial visit. I then did a cycle with Fem.ara + injected meds, which was cancelled by a different doctor in the practice due to under-response (my doctor was on vacation) and told to consult with my doctor when he got back. It was late June by this time.
My doctor was hard to schedule with because he was “so busy” according to the clinic. We agreed to a phone consult. My doctor told me he wouldn’t have cancelled that cycle, would rebate my clinic fees (which we appreciated) and would personally supervise my next cycle. “Good,” I told him, “because my period is starting.” We booked the next cycle and I started shortly thereafter. A week later, I was told by the nurse at the clinic that one of the other doctors would review my lab/ultrasound results because my doctor was on vacation. I was furious.
The July cycle went wonderfully, a really good stim, but I didn’t get pregnant. I asked to talk to my doctor again, was able to get another phone consult, and expressed that I was a bit upset he hadn’t personally monitored my cycle as he had promised. He basically told me that he got to go on vacation and implied that my expectation that he would personally monitor my cycle was expecting far too much. He was so convincing, I remember doubting my memory and asking my husband if he too had heard the doctor promise to monitor the cycle personally. My husband was certain he’d heard the doctor say that too.
We decided to move to IVF because we were losing a *lot* of money on drugs, fees, and lost work for cycles that were being cancelled. It was obvious that my ovaries were super touchy and didn’t necessarily respond predictably. I was going in a lot for monitoring. We figured that if we did IVF, we’d be able to do one cycle with all the monitoring and have a higher chance of pregnancy. I again phone consulted with my doctor in late August, explained to him that I had started a new job, and that we were thinking IVF. I had planned to possibly do the IVF in February or March of the next year and settle into my new job. “We could get you in this fall,” my doctor told me. Because I really, really wanted to be pregnant, I agreed. I explained what I did at work and asked if there was anything I should know about IVF that would affect my job differently than any other TI/IUI cycle with injected meds. He told me to plan to take one day off for egg retrieval and two days for transfer.
A couple weeks later, I called the clinic to finalize some details and the nurse mentioned in passing that I would have a 25 lb lifting restriction and restrictions on bending. My job involves a lot of lifting and bending. I just about hit the roof. But my doctor was out of the country on a 3-week mission trip and I had to make decisions right then or delay the cycle. We had already scraped together the money and I was desperate. I made a poor choice and went ahead.
The cycle proceeded, I was very anxious, and 15 eggs were retrieved. The day after my egg retrieval I went back to my job, where I would be on my feet for 8 busy hours. I had to leave partway through the shift because I was in so much pain. Two 3-day embryos were transferred, 2 were frozen, and I went home to wait. I had my beta a day early because my husband and I were both off work that day. Though the clinic nurses called me to tell me I had a positive beta and was pregnant, my doctor also called me personally to congratulate me. I appreciated that enormously.
Of course, I got googling (ugh) and realized that even for the day it had been done, my beta seemed…low. But it doubled appropriately, then exploded. Even so, I could not shake a nagging feeling that I didn’t “feel” pregnant at all. Nothing. No tender breasts, no nausea, nothing. When I went for my first ultrasound with a different practice doctor, the doctor found that I had 2 gestational sacs, both with something inside but only one with a heartbeat. The next week I went for another ultrasound with my doctor to check on the one with no heartbeat to see what was going on. Still no heartbeat in the one, but a beautiful, perfect heartbeat in the other. He was effusive, excited, and told me to send him photos.
The bad feeling never went away. Finally one weekend, I found myself almost hysterical with anxiety. I knew something was wrong. I called the clinic Monday and they scheduled me for a scan to reassure me (with one of the other doctors in the practice, my doctor wasn’t at my location that day). I remember feeling the cold wash over when I saw the baby come into view. I knew there was no flickering of a heartbeat, and the ultrasound tech’s immediate “I need to go get the doctor” told me everything I needed to know.
My doctor never called. Never said a word. Never told me how sorry he was that I’d miscarried.
Do you blame your first RE for the miscarriage?
Not at all. I had known in my gut something wasn’t quite right from the start and unfortunately, miscarriages aren’t particularly uncommon.
In hindsight, are there some things you would have done differently?
I would have changed doctors after the situation where he told me he would personally monitor my cycle and then didn’t – particularly after he tried to play it up like he never would have said such a thing. I work in healthcare. It is totally good for healthcare workers to take breaks, vacations, etc. I absolutely support that need. I also totally understand that emergencies happen, but based on what the nurses said at the time, they specifically said vacation and he later confirmed that. There is absolutely nothing wrong with taking vacation. But I had/have a huge problem with the dishonesty. The truth is, I suspect that he just completely forgot what he said to me and really didn’t care.
I really regret not putting the brakes on that first IVF cycle. It made things much more stressful at work (even though I had an extremely supportive boss and coworkers, thankfully) and once I realized that my doctor (again) hadn’t been 100% forthcoming with me, I wish I had insisted on waiting until I saw him to talk about the situation to do something as major and expensive as IVF.
I wish I had listened to the part of my brain that threw up the red flag in our first consult instead of playing it off as a bit of a misspeak and proceeded with more caution.
One other thing that, in hindsight, would have been good would have been getting a second opinion from a different RE before going for IVF (it’s worth noting that my first RE did not push IVF for us – we were spending so much on TI/IUI cycles that by the time we’d gone through a few, we were getting to the point where we couldn’t keep doing those for the lower chance of pregnancy, so we brought it up). I was really intimidated by the idea of finding someone (the clinic I went to was the only one that had a local satellite office). But even if I’d needed to go to the city where the main office was located or somewhere else entirely, I wish I had had someone review my chart/tests/treatments to that point just to sort of double-check things.
What are some things you would have wanted to see from your first RE?
The other day, Mel at Stirrup Queens posted a link to a project about the worst things people said to women who miscarried or had stillbirths. I know, unfortunately, exactly what my chalkboard would say:
“Not one %$#%& thing. Absolute silence.”
It still makes me really angry that my doctor could take the time out of his “busy” schedule to call me and congratulate me on being pregnant but when I miscarried, he couldn’t be bothered to take three minutes to say “I heard. I’m so sorry for your loss.” This is basic. It’s not an onerous request, and I would argue that it’s an essential part of reproductive healthcare.
I also would have appreciated it if he had been much more careful when he was advising me what to expect from IVF. He did not tell me about the lifting/bending restrictions, which were incredibly relevant to my job that I had told him about (I think he figured the nurses would go over IVF instructions and didn’t think it was his job). I am also really frustrated that he didn’t encourage me to take a day off after the egg retrieval, especially since he knew I didn’t/don’t work a desk job where I might be able to take time to sit down. I was in a lot of pain as a result.
Confidence can be a good thing, but I felt like his statement about water at the wedding instead of wine wasn’t a helpful thing to say. It gave me some unrealistic expectations for the process/timeline and honestly, I felt horrible – like I had done something wrong – when I wasn’t pregnant by the time of that wedding.
He also came across as pretty dismissive when I would ask about how the various treatments would affect work or my life. These were reasonable questions on my part and should have been treated/answered seriously.
Planning to have Part 2 coming soon…