I’m diving back into updating this sadly neglected blog so that anyone who’s interested can follow along with our IVF journey. I have relied so much on the support of friends and family this past year, which has been just the beginning of a long journey. I am not sure I would be where I am now, emotionally prepared for a huge medical challenge, without all of these the emails and texts and words of support. So if you are reading this, thank you! Hopefully I now have all surgeries behind me and we can look forward to the next phase with more excitement.
Since IVF can be an uncertain time, filled with dozens of milestones and perhaps setbacks over the course of many months, I think that updating a blog will hopefully achieve two things: 1) Free you from any feeling of obligation to ask us how things are going and 2) Save me from keeping track of who has been updated about what.
These blog posts will be kept free from the most grisly details, but there will be mentions of medical terminology (ICSI, embryo, egg retrieval, implantation, hormones, injections, etc) so if that kind of thing makes your eyes glaze over, I totally understand! For those that want slightly less information, I will provide a one-paragraph bird’s eye summary before each blog post, so you can skip the rest.
Before I get started with the most recent up-to-the-minute update, I thought I’d bring you all up to speed with the back story of the past year.
First the bird’s eye summary, as promised:
After trying to conceive, I developed an ectopic pregnancy in July 2018, resulting in surgical removal of one of my Fallopian tubes. A test showed that my remaining tube was also damaged, very likely due to my history of having a ruptured appendix in 2017. I had surgery to remove the remaining tube as it posed a risk for another ectopic pregnancy. We still wanted a second child, so IVF was now the only option. And here we are, at the beginning of that process.
Now, if you want all the details, read on…
Summer 2018
We started trying to conceive in June of 2018 and were thrilled to get a positive pregnancy test on June 27th. Even more than with my first pregnancy, I quickly became obsessed with the science of embryo and fetus development. It’s incredible to me how much is known (and how precisely!) about how and when various organs are formed in the fetus from one day to the next. No spine one day, spine the next day. No heartbeat one minute, and then like a match being lit in the darkness, the very first heartbeat of life!
So, every day was a new milestone I could look forward to in the development of our next child. It was exciting, but I’m sure all the science geeking out was masking a huge amount of anxiety about being pregnant. The trauma from Emily’s birth was still so fresh. Even though 14 months had passed, I was only one month into trauma therapy (more on that later), so everything was still very raw and unprocessed. I was feeling strong, but not as mentally prepared as perhaps I could have been.
But then on July 11th, after some concerning symptoms prompted a visit to my OB, the ultrasound tech asked me that fateful question: “Do you have a history of ectopic pregnancies?” to which I responded “No…. ” I didn’t ask why, but I knew.
Since I’d been rushed in for the ultrasound same-day, I wasn’t able to meet with my OB until later that afternoon. When I did meet her, she was extremely empathetic. I am still so grateful to have been in her care during this dire moment in my life. I was a perfect stranger to her (long story, I’d had to switch OB’s because my insurance no longer worked with my previous one) and yet I was able to hold together at a moment when I could have very easily fallen apart.
Methotrexate and Surgery #1
We discussed treatment options, of which the only real choice was taking a drug called methotrexate to eliminate the pregnancy which was located in my left Fallopian tube. The only other option, doing nothing and hoping that the body will naturally absorb the pregnancy, is basically never recommended, as a ruptured Fallopian tube can become fatal within a matter of hours due to internal bleeding. I’d had enough scary medical experiences for one lifetime by that point, so we went with a methotrexate injection which I received later that same day.
The next few days were harrowing. I was to take blood hCG measurements on day 3 and day 7 post injection, and they wanted to see my hCG levels dropping to confirm that the pregnancy was resolving. Meanwhile, not knowing whether I was moving towards or away from a dangerous rupture, I kept feeling pain, usually during the wee hours of the night when, of course, everything seems worse. The days could not pass quickly enough.
Finally, on day 7 my blood test revealed still-rising hCG levels, indicating that the ectopic pregnancy was not resolving. Sometimes in these cases, a second methotrexate injection is indicated. But in my case, given my hCG levels and how far along I was, surgery was the safest option. I was admitted to the hospital that same day for an emergency laparoscopic salpingectomy (that is, removal of the Fallopian tube).
Actually, it was a half-emergency, because my tube hadn’t ruptured. Which meant I had the pleasure of spending eight hours in pre-op, fasting. If you ever go in for a scheduled procedure under general anesthesia, they will have you fast for twelve hours, hopefully most of which you get to sleep through. The surgeon wanted me to fast for six hours (it ended up being eight because she had to deliver a baby! Ah, the life of an OB!)…. hence, a half-emergency.
That surgery was non-eventful and I recovered completely within about six weeks.
Reproductive Endocrinologist #1
At this point I had some major concerns about my risks for another ectopic pregnancy, so I scheduled an appointment with a reproductive endocrinologist (let’s call her Dr. Carmen). She agreed with me that my remaining right Fallopian tube could be a risk, and ordered a type of dynamic X-ray imaging test called an HSG (hystero-salpingogram). That test showed that the tube was distended, making a spontaneous pregnancy in utero unlikely. Thus, IVF was the only safe option.
So that was the plan. I met with one of the nurses in the clinic who explained the process, and also the financial consultant who explained how insurance companies almost never cover fertility treatment. (We’d already swallowed that bitter pill, so no shockers there).
So, excellent. All systems go for IVF!
Well, not so fast. Everything had happened so quickly, and it was all fairly traumatic. Not just emotionally but physically. I decided I needed a break. We were traveling to Oklahoma for Thanksgiving, so I figured we’d take a breather, and meanwhile schedule an appointment with another reproductive endocrinologist just to have another clinic to compare and contrast with.
Reproductive Endocrinologist #2
In December 2018, we met with RE #2, call her Dr. Lucy. Her immediate concern was that, even with IVF, my damaged remaining tube posed a risk for ectopic pregnancy. This is because the “implantation” phase of IVF is not as precise as it sounds – the embryo is free to wander for up to a few days before finding a home. Instantly we were on the same page with my #1 priority being never to get another ectopic pregnancy, so we tried to hustle to get a tubal ligation surgery on the schedule before the year was out (we’d already met our deductible for the year).
The scheduling didn’t quite work out that way (again, because of delays from my insurance – hmmm, I wonder why they would try to delay December surgeries??) so I ended up going in for surgery on January 10th, 2019.
Surgery #2 (*Trigger Warning*)
This gets hard to write about. That surgery was the beginning of three months of the worst anxiety I’ve ever experienced in my life. Let me back up.
Initially I was convinced that I had been scheduled for surgery on January 3rd. There was some miscommunication. Great, I’d have time to enjoy the holidays, celebrate the New Year, and start off 2019 immediately by turning a new chapter. Instead I had to wait an extra week. During that week, I had time to think, but not in a good productive way. I was scared of surgery. I was scared of going under general anesthesia. My mind went to some very dark places.
My biggest mistake was not immediately contacting my therapist for an emergency session. I just figured I could power through, breathe deeply, and survive anything. I seriously regret not taking my spiraling thoughts seriously. I wish it had occurred to me, “Hey, your mental health is deteriorating rapidly, and these thoughts are not just something that you need to plough through – that’s what the whole mental health field was created for!” Sigh. Hindsight is 20/20.
So, going into surgery, I was in a bit of a state, shall we say. To an outsider, I must have seemed perfectly together. Chipper, optimistic, cheerful, cooperative, enthusiastic. The model surgery patient! So during my five minute meeting with the anesthesiologist and the nurse anesthetist, we went over on a very high level what I could expect from the surgery, and they assured me that I’d be kept comfortable and sedated and given all kinds of wonderful pain management. Excellent. I’m processing the information, I’m in the room, and yet I’m not altogether with it.
Suddenly, the time arrives. They begin to wheel me into the operating room. Instantly, a thought enters my head, “Whoa…. I’m here right now. This is the present moment, not the past. But, I wonder if my baby is alive? OOHHHH SH*&#$ that thought didn’t make sense. But how do I know? And why is the room spinning?” and then just like that, Bam. Full on panic, post-traumatic attack.
I’m sobbing and trying to explain to the nurses what is happening.
Someone holds my hand, and I squeeze tight.
I try to breathe deeply.
I hear the anesthetist, not skipping a beat, tell me “I’m going to inject versed right now, you will start to drift off.”
I say “Thank you… Ah… warm and fuzzy…. ” and then nothing.
Next thing I know, I’m vaguely awake in the recovery room. Things are fuzzy, but I’m mostly OK. Except that I’m not, because my throat closes up at one point and I ask for a nebulizer treatment (asthma drugs that are delivered via a steam-filled tube) but then I’m sobbing again because not being able to breathe is scary.
They bring Louis in to help calm me down, and things look up for a while until the anesthesiologist comes in and tells me that I had woken up from anesthesia screaming inconsolably. Specifically, I was screaming “I’m going to die” and “I’m being assaulted”. That was hard to hear. I start to sob again. The thing about these anesthesia drugs is, they take a while to fully clear from your system. This can cause emotional lability. Yes, I cry easily under normal circumstances, but I’m totally gonna blame the drugs here!
Another period of time passes (it’s all a complete blur – it felt like an eternity) and I haven’t been able to void my bladder. This, to my utter embarrassment, makes me sob yet again. It’s a devastating final blow. I am not in control of my mind already, and now my body.
They won’t catheterize me until my bladder reaches a certain volume, which just seems inhumane, to me. More crying and, to my shame, begging to be catheterized. The pain is unbearable. It’s a 10 out of 10. I’m basically in hysterics by the time the nurse gets approval, over the phone from Dr. Lucy, to catheterize even though I don’t meet the criteria.
Relief is instant. But I am now shattered completely. I’ve only experienced 10 out of 10 pain twice in my life, and both times…. well, it sticks with you. It’s not something you bounce back from the instant the pain is gone.
So that began a three month process of healing physically and regaining my mental health. At my two-week post-op appointment, Dr. Lucy said my incisions were looking fine, barely mentioned the results of a hysteroscopy she had performed during the surgery, and then delivered a crushing blow: My post-anesthesia reaction (plus pre-anesthesia freak-out) made me a very poor candidate for any kind of elective procedures involving anesthesia. To quote: “I’m concerned about you ever undergoing anesthesia again, given what happened”. My mind interpreted that (unfairly) as her saying “IVF is not an option for you, your dreams of having a second child are hereby shattered”. That wasn’t at all what she meant, but that’s what I heard between the lines.
After talking some more, it began to sound like maybe she’d still be willing to work with me if I first underwent an unspecified period of trauma therapy. I was in general therapy already, but had not yet begun the course of EMDR which is a common and extremely effective treatment for PTSD.
So I left her office feeling in shock, not particularly cared-for, and with only the vaguest sense of the beginnings of the outlines of a plan for treatment. For the next agonizing eight weeks (when you’re counting the days, an eternity) my wonderful therapist played umpteen rounds of phone tag with Dr. Lucy to try to get on the same page about what Dr. Lucy wanted as far as records of my mental health treatment. Eventually I grew too anxious from waiting and put myself on the schedule for an initial consult with RE #3.
My tireless therapist persisted, and finally contacted Dr. Lucy. The news was actually more optimistic than I’d hoped. She would be willing to work with me on IVF and leave the exact plan for mental treatment up to me and my therapist. Great!
However, by that point, I had so much anxiety and unease surrounding the entire surgery procedure, that unfortunately working with Dr. Lucy didn’t seem like a viable option. So I ended up jumping ship again. Onwards!
In my next post I’ll go over our process so far with our third (this time’s the charm!) reproductive endocrinologist, Dr. G.