Well, things took a turn for the worse. My clinic decided to cancel my FET for a couple of reasons. I felt really sad at first and thought “When am I ever going to have our baby?” This process can be so emotionally and physically draining. But my clinic started me on a new protocol that will hopefully help me respond better to the medicine.
Catch-up on Previous FET Prep Posts
Countdown Until FET: 25 days (as of 07-05-2020)
If you remember from my previous post I talked about how my uterine lining was half the size my clinic needs it to be in order for them to do a transfer. When it comes to frozen embryo transfers it’s all about the lining. My lining needs to be 8mm for the transfer but mine was half that at 4mm last week, and when I did a follow up ultrasound it had risen to 6mm (so still not what they need). I’ve always been a slow responder with the medicine they give me, even on higher doses.
After I completed that followup ultrasound I decided to send off a message to my clinic that I completed both the ultrasound and the blood test and that they should be receiving the results soon. I like to send these messages to ensure they keep an eye out for the results, which they need ASAP from my STAT same-day tests. They need those same-day test results because it will determine whether I need to continue with my medication that night or if I need to change all my meds right away. It all depends on how my body reacts to the medicine and these tests are like a current snapshot of what my body is actually doing.
I sent off the message to my clinic, then I noticed that the backup nurse I spoke with last week about starting my new meds had left me a message in the patient portal. I didn’t realize she would send me a message after we spoke. Last week she told me to continue with my Estrace three times daily, continue Lupron at 5 units, and then to also add in vaginal Endometrin at bedtime to help with my lining. Or so that’s what I thought she had said.
But as I was now reading this message she sent me timestamped right after we spoke, it was saying something different. But this message said nothing about Endometrin being taken vaginally, instead it said “start taking Estrace vaginally at bedtime.” Take Estrace vaginally? She must have mistakenly typed Estrace when she meant Endometrin, right? I was already on Estrace three times daily but I was taking it orally. The only medicine I have that is prescribed as a vaginal suppository was Endometrin. It stands to reason that she made a mistake with her typing.
I sent off a message to my clinic to double check on whether I was supposed to be taking Estrace or Endometrin vaginally at bedtime. The backup nurse didn’t respond this time, instead it was my regular nurse. These were her first two words of her message, “Oh, no…” And with those two words a lightning bolt of realization hit me, I had been taking the completely wrong medicine for five whole days.
My nurse called me shortly after speaking with the doctor about the situation. I told her, “I could have bet my life that she told me on the phone to take Endometrin and not Estrace.” I was certain of this. My regular nurse told me that we would need to cancel my frozen embryo transfer completely because with the fourth monitoring tests they could see my body was beginning to ovulate. “The Endometrin put you into an ovulatory phase, which is not where we want you right now. It changes the lining. I’m so sorry Julie. I guess this transfer just wasn’t meant to be.”
Somehow when she said “this transfer just wasn’t meant to be” it actually helped me to hear that. My uterine lining had never measured what they wanted it to be at any point during the monitoring appointments. That fact, in and of itself, is enough to cancel a transfer. Now add in a major medication mistake, well it was the final nail in the coffin. It was over.
So now what? My nurse spoke with my doctor and relayed a new game plan. Although this transfer had been cancelled, they wanted me to restart a new FET cycle right away. I am now starting all over with the birth control pill and Lupron. But instead of the same protocol they have me taking double the dose of Lupron. I’ll be taking 10 units of Lupron twice daily, instead of once daily. I don’t recall ever being on this high a dose of Lupron before with my egg retrievals.
That same day I learned my FET was cancelled I could feel the anger growing inside me about the situation. I could have sworn the backup nurse had told me Endometrin, not Estrace, and now here I am with a cancelled FET. This has to be her fault right? Maybe it would have been cancelled anyway with my thin lining but maybe not. I remembered that I had wrote down notes as she was talking to me. Maybe if I could find that note I could prove that she did in fact tell me the wrong thing. I remembered I had taken out the trash that morning, with the note inside. There was no way I could prove it.
But then I remembered that I had taken a picture of my note of instructions. I occasionally do this in case I need to refer to my notes later. Well I found the note in my phone’s photos. As I was writing the note I had just woken up and was trying to decipher the backup nurses’ rapid-fire instructions and test results. This note is a hot mess. I had to ask her multiple times to repeat herself because she was talking so damn fast. Why the hell did I have to talk to a backup nurse during a pivotal time in my medication changes? But as you can see in the photo of my note, it turns out that she did tell me Estrace, not Endometrin.
Somehow my sleepy, confused brain was certain she told me Endometrin. So it wasn’t her ‘fault’ after all. My anger that I had been directing towards the backup nurse dissipated and I actually felt relief that it wasn’t her fault. The relief was knowing that my clinic didn’t tell me the wrong thing. If they told me the wrong thing I think I would have carried that anger longer.
So did that mean it was my ‘fault’ that my FET was cancelled? I remembered my regular nurse’s reassuring and empathetic words that helped me to process the bad news, “it just wasn’t meant to be.” My uterine lining had been too thin this whole time, and it most likely was going to get cancelled anyway. My body wasn’t doing what it was supposed to be doing even when I was taking all the medicine as they were telling me to. My FET was already postponed even before my medication mistake. I decided to forgive myself because all signs were pointing to a cancelled FET anyway.
I was dreading having to reorder my medications to start a new FET cycle. I was only part of the way through my cycle and hadn’t even started my PIO injections, so I only needed to reorder Lupron and Estrace. In total I had to pay $592, which was better than I was expecting. I was thinking it would be double that. I’m now focusing on my new FET cycle that I’ve already started. My new tentative transfer date is July 30th.