As I've been posting on Facebook and Instagram tidbits from our experience with IVF, almost every day I've gotten messages from people thanking me for providing a frank account of what the experience is like. Some might feel the information I'm putting out there is overly personal. (In which case, might I suggest in the most loving of ways that you take a break from following my blog and social media until this phase of our life is over?) But I know that as we headed into IVF, it was hard to get a sense of what it is actually like to go through this process.
There was plenty of clinical information out there—drug dosing, timing of procedures and testing, side effects, and the like—but very little in the way of stories that both captured the emotional side of the experience and provided enough context to help me understand how my experience might match or differ from the one described. So, that's what I aim to do with this blog: both help people contemplating IVF get a sense of what to expect, and provide an understanding of how this all works and why people's experiences can vary so widely when we are all undergoing the same type of treatment. If that's why you're here... read on :)
We had our first egg retrieval on July 13, 2016, with fertility meds and monitoring for the two weeks leading up to that date. It was quite a long journey to even get to the point of starting, and you can read all about that here. In this post, I'll cover what that first round of IVF was like for us.
We used 14 days of Follistim at 450 units per day, which according to what I've been told and read, is pretty much the maximum dose any doctor uses, ever. The dose was determined based on my age and hormone levels. A couple of years ago before my endometriosis surgery, even at age 35 my doctor said my hormone levels were more consistent with a woman a few years older than I am—meaning I was nearing the end of my reproductive life cycle. We lost two years to complications from that surgery, recovering my kidney function and overall health and strength. So, it made sense that I would be on such a high dose for the longest allowable timeframe—but I do think it's humorous that each vial of medication comes with five separate needles (indicating that it could be used for up to five consecutive days), but I would use the entire vial of medication on one day!
Follistim is a synthetic version of follicle stimulating hormone, or FSH, so it makes sense to me that I really didn't experience many side effects from this medication. It's a substance that is normally found in our bodies; I just had a much higher amount of it than I would otherwise have had.
A couple of days before we began the Follistim (I say "we" because my husband does all the injections for me; it's a joint effort), we started Lupron twice a day. Lupron acts on the pituitary gland to stop the release of the hormone that, in turn, stimulates the ovaries to release estrogen. That is to say, Lupron acts to suppress estrogen. It's a drug that is rather commonly used for a variety of purposes, including halting the progression of endometriosis (although I never used it for that). My first couple of days on Lupron, I felt constant anxiety—a sensation of near-panic and wanting to jump out of my skin. But it subsided (the first day was the worst), and after that, I had virtually no side effects, apart from being more tired than usual (I attribute that to my eggs growing) and some soreness towards the end (the last couple of days it was a sensation that my ovaries were on fire). Probably the worst part of it was the pain and itching from all of the injection sites on my tummy (3 shots per day, sometimes 4 if we were splitting a vial of Follistim over two days). I did use an ice pack before administering the shots and that helped a lot with the pain.
Throughout this time, I had pelvic ultrasounds and blood work done twice a week. Although these are quick and painless, they are still invasive and it does take some time out of your day to go to the doctor's office twice a week! I would usually have one appointment on the weekend and one during the week, so that made it a little more manageable. It's a pain not to be able to travel, especially given how unpredictable the process can be. We actually started two weeks after we were scheduled to start, which made me glad we didn't book any travel based on when we initially thought the retrieval was going to be! It has been a pretty quiet summer for me since I've mostly wanted to stay close to home just so nothing would interfere with these treatments; Sean has gone on a couple of trips without me, and we've said no to camping and some other weekend trips we would have taken. (Call me crazy, but I didn't want to be administering injections and trying to create a sterile environment on a camping trip!) Through this all, though, I feel extremely fortunate that we live so close to the clinic and that it's even possible for me to go there twice a week without disrupting my normal life.
At each monitoring visit, they count and measure the eggs they see on the imaging screen. Given everything that has happened so far in our fertility journey, I try not to have expectations or take anything for granted, so I was beyond thrilled to hear that 10-12 nice looking eggs were showing up! The fact that the drugs were working, that my ovaries were working, that any of this was working just felt like a miracle to me.
At my final monitoring visit, they declared me ready for the trigger shot, meaning I would inject two doses of Ovidrel at 10:30 that evening, in preparation for egg retrieval two days later. The trigger shot must be administered exactly 35 hours before the egg retrieval is scheduled. If it's off by more than 15 minutes, you have to call the doctor's office and have them adjust the timing of your procedure! It just was crazy to me that this part of the process would be like clockwork, given how unpredictable the rest of it had been for us.
After we administered those final two injections, it was a somber two days of waiting. I was extra careful with my special diet, which I'd been following already since the beginning of June. I've tried to avoid soy in general for the last two years or more, since the phytoestrogens it contains can interfere with hormone balance in the body, but I had to get really strict about it, avoiding those small amounts I would normally eat, such as soy sauce when we go out for sushi. In fact, I avoided all restaurant food, because soybean oil is so widely used as a cooking oil. Store-bought cookies, snacks, and cereals, were mostly out, too, due to the widespread use of soy lecithin and soy protein. I prepare most of my food at home anyhow, but during this time I stopped even those occasional restaurant meals.
Due to my abnormal bleeding during surgery two years ago, I also was avoiding foods that interfere with platelet action or otherwise act as anticoagulants. The list of these foods and supplements is rather lengthy, and includes some very common foods that I was used to eating almost daily! For a six-week period, I mostly avoided these foods (and grew stricter about it as my procedure grew closer): garlic, ginger, cinnamon, cayenne, licorice, pineapple, ginkgo biloba, chamomile, echinacea, bilberry, fish oil, glucosamine, Vitamin E. My doctor actually recommended that I stop taking all vitamins and supplements out of an abundance of caution. So, it was a sad few weeks without my Vitamin D, probiotics and other supplements I am used to getting daily—but I am glad that at least we went through this process during the summer, when I only feel a little bit crummy and not completely despondent!
Another change I made was to switch to low-impact exercise, to allow my body to put its energy into growing eggs instead of muscle repair and recovery. I mostly did dance workouts, which were a fun stress reliever working it out to great music. I also did some yoga, although I avoided anything vigorous, and avoided all inversions and deep twists after the first few days of Follistim. This is important because as your ovaries become larger and heavier, they can bounce around inside you and your fallopian tubes can become twisted! If this happens, your ovary loses its blood supply. This is a medical emergency. Gruesome, I know, but I think it is important to be aware of because people assume yoga is safe! No headstands during the stim phase of IVF, OK?
Anyway, I had a day and a half between the trigger shot and the procedure to get extra nervous and anxious. I tried to stay focused on the present and be extra good about self-care, but to be honest I was terrified of having surgery again after what happened two years ago, even though this procedure was very minor compared to the one from 2014.
The time passed, and I even managed to sleep the couple of nights before the procedure. I went to work the day before, but took the day of the procedure itself off (which is necessary, trust me). The night before, I couldn't eat anything after midnight, but that was the extent of what I had to do to prepare for the surgery. I showed up at the clinic at 8:45 for a 9:30 procedure. My husband was with me, and my dad and stepmom also came.
The worst moments were when I was all by myself in the back room, changing into my hospital gown and then just waiting. Once the nurse came in and started talking with me, it was better. I've said it before, but being a nurse goes so far beyond medical knowledge and competence. I'm not sure if it's part of the job description, but during my inpatient stay in 2014 and again with this recent procedure, the nurses' skill for compassion, consolation and comfort was so powerful in putting me at ease. If you know a nurse, please thank them for what they do because it goes so far beyond giving shots, administering meds and assisting doctors in surgery.
Egg retrieval is a pretty simple procedure, but it still astonishes me that it's possible. It is done by passing a needle through the vaginal wall, through the pelvic cavity, and into the ovary. The eggs are essentially vacuumed out of the ovary. Pretty incredible, right?!
In the days leading up to the procedure, I had heard stories of people being awake and aware and able to feel what was happening... and this terrified me. The procedure is done with conscious sedation, meaning that although you won't remember it afterwards, you are awake and aware of what is happening. From what I'd heard, I wondered if the doctor wouldn't care that I was in pain, and would just go ahead with everything since she would know I wouldn't remember it. A conversation with the nurse put my mind at ease, because she assured me that if the patient is feeling pain, they stop what they are doing and administer more meds before proceeding.
I'm not sure if those stories I heard were from people who received different meds than I did, or if maybe their bodies reacted differently to the meds, but whatever the case, I don't remember a thing from the time they started the sedation, to a couple of hours later in the recovery room. The sedation wears off in waves, so I would be awake and talking, and then be out again. Because of my 2014 complications, they kept me at the clinic for observation for two hours after the procedure instead of the usual one.
During this recovery period, they told us that the 10-12 eggs they had seen on the ultrasound had actually turned out to be mostly endometriosis growths on the outside of the ovaries (I guess they can look the same on an ultrasound). So, they had only gotten three eggs, and only two of these had been mature. It was somewhat of a disappointment, but honestly I still felt it was a miracle that they had even gotten two. They told us we would get a phone call the next day to hear how many had successfully fertilized, and then they would monitor the growth of any resulting embryos over the next few days.
I felt great as we were leaving the clinic, and since I hadn't eaten since the night before, naturally I wanted to go out for my very favorite type of food... lunch buffet at an Indian restaurant, with TONS of ginger and garlic! I made it to the restaurant and even got a plate of food, but after that, pretty much fell asleep at the table. My dad and stepmom were such good sports, and got a nice introduction to Indian food that day. I, on the other hand, only managed a couple of bites before literally dozing off. After lunch, Sean and I went home and took a nap. After that, I was feeling much better. We got ice cream with friends and dinner with family later that day, and my appetite and energy were pretty much back to normal.
Other than that, I was on antibiotics (doxycycline) for five days after the procedure to prevent pelvic infection, and I held off on inversions and vigorous exercise also for about five days, until all soreness subsided, but for the most part I felt relatively normal. You can hear more in my video blog about the procedure and everything that led up to it and came after.
We found out the next day that two of the three eggs had successfully fertilized (we used ICSI, in which the sperm are injected directly into the egg instead of leaving that part to chance). Because there were so few of them, my doctor recommended freezing them on day 3 instead of letting them continue growing to day 5. Embryos that can make it to day 5 growing in a dish are stronger, but day 3 embryos may still be (and often are still) viable. So, we took her advice and froze them on day 3.
A few days later, we received printouts showing our little bundles of cells. Thinking of those as our babies felt both odd and incredibly touching! Both of our embryos were scored as grade A, the highest possible quality they can be at this stage. However, at a future date when they are transferred, there is still only a 25 percent chance of that resulting in a live birth. There's a lot that still has to happen before we become parents, but I am cautiously optimistic, and already it feels like a miracle has occurred for us to have those two precious little frosties waiting for us!
Because of those steep odds, and because of my age, we are going through our second round of IVF as I write this (we are on day 10 of stims with a retrieval coming up in about a week). They switched me to a different drug protocol for this round. We are hoping to get more eggs out of it, since due to my age and the cost, this will almost certainly be our last round. I'll recap this round and the differences for you in my next blog post.
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