This is the second part of my coming to terms with my IVF/infertility treatment experiences, picking up when I switched doctors. Read Part One here.
I’ve written in a Q&A format, mostly because that seemed easier than trying to form this as one narrative piece.
What was the difference between the first and second RE?
I switched because my second RE was the doctor who “officially” diagnosed my miscarriage. He was kind and compassionate through that awful moment and promised that he would *personally* talk to my OB/GYN to help arrange the D&C. I was super surprised the next day when my OB/GYN told me that 2nd RE had, in fact, actually called and talked to OB/GYN. It was probably one of the first times I’d been promised something in that office and it actually happened.
I mean, that was the biggest difference. 2nd RE actually followed through on his word consistently.
I also appreciated the fact that 2nd RE wasn’t nearly as uncomfortable with the really strong emotions that come with IVF as 1st RE (2nd RE was a lot younger than 1st RE, so I wonder if that played a role). After my ectopic/miscarriage (following my FET), I walked in for the follow up appointment loaded for bear, so to speak. I cried for pretty much an hour plus, and I really appreciate that he didn’t try to cut me off or tell me that it was okay, we could try again. He told me that it made total sense that I was upset, that we did need to take a break at this point. Also, he was in favor of limiting the number of IVFs – 3 fresh was his personal max in my situation, and as he put it, that was only if we wanted to go that far at all. It was helpful to hear that he wasn’t advocating for more and more and more and that it was okay to say enough. In that follow-up, we decided we’d do one more round of fresh IVF, but if that failed, we were probably done. He supported that decision.
2nd RE also was willing to try things that helped me get through. I asked, prior to my FET, if my embryos could be grown out to blastocyst stage (they were frozen at 3-day) prior to transfer – and if they couldn’t get that far, then at least I’d be spared the 2 week wait. Even though this wasn’t clinic protocol, he was fine with that. He also would call me personally if things were changing/not going well/etc.
Did things go perfectly after that?
No, I mean, there were still communication issues at times between staff in the clinic, but it was better.
I mean, honestly, it’s amazing how far listening and basic compassion goes. Don’t sell false hope. Follow through on your promises. Keep in communication with patients. Respect limits and boundaries. None of this is reinventing the wheel – it’s stuff clinicians should be doing. Unfortunately, it’s time consuming, and I think this is where problems come up. My clinic offered a complimentary session with an infertility counselor with IVF, but it’s not really enough. It’s not something that can be entirely outsourced – the doctors and staff at clinics have to be involved.
One thing 2nd RE did that I found helpful was that he gave me his personal work email – the one that went directly to him. Funny enough, I never wound up using it. But it took a HUGE load off me mentally to know that if I had one of those questions that wasn’t serious enough to call the on-call physician at 2am but was bothering me, I could send an email. It also helped to know I could contact him using my own words and not have to rely on someone else passing the message along.
Also, when 2nd RE had bad or mixed news, he would sit down with us – I mean, physically, sit down. I know this sounds sort of strange, but it helped because he wasn’t sort of “standing over” us and could make eye contact that way.
What are some thoughts on clinics and the experience?
I think one thing I would say to infertility clinics/staff is that even a single failed cycle, whether that’s IVF, IUI, whatever, can represent an enormous loss to the patient. It’s time lost, emotional endurance lost, and as crass as it feels to mention money, it can be a big financial loss. I mean, a single cycle of IUI or TI with injected fertility meds for me cost around $800-$2500, plus the time and emotion that goes into it. Even clom.id or fem.ara, with timed intercourse, while cheaper, still ran about $150-$300 including the ultrasounds. That’s not impossible, but it’s not an inconsiderable expense either. By the time my husband and I got through infertility treatments, we had spent >$40,000. For perspective, we spent about as much on a down payment for a 4-bedroom house + some new furniture + some new flooring. We don’t live in a super expensive area, admittedly, but it’s still a boggling comparison. Having a cycle fail doesn’t just mean all the emotional losses (which are considerable as well) but also a sickening amount of money and financial stability in many cases.
I was really grateful when the fertility clinic I used took down all the baby collages that patients could see. I’m fine with clinics having stuff like that in strictly staff-only areas, but I remember really clearly passing the “baby board” with my miscarried fetus still hanging out in my uterus and feeling like someone had kicked me in the face. I did not find it “hopeful” or helpful to have those out. It made me feel like a defective failure.
It would also be nice to see “success” and “failure” re-defined when it comes to infertility. I’m not a “success” because I had kids – I have absolutely no idea how I managed to pull that one out. In other words, it’s not because I did something “right” or “wrong”, it’s just how things worked out. Likewise, I wasn’t a failure when my cycles weren’t working and I miscarried twice in a row. I would love to see clinics be much more mindful of patients as whole human beings who have intrinsic worth and dignity regardless of whether or not they have children. I view success – when it comes to infertility – to be comprised of having a life one considers full and meaningful no matter what that looks like. Basically, coming out on the other side is a huge victory.