IVF

What I Learned from IVF

On the first night of our first IVF cycle in February 2017, my husband laid out our needles, syringes, and bottles of medications for this picture. I remember feeling equally excited and overwhelmed by our new nightly bonding ritual. Our life for the next year would revolve around IVF and its many injections, procedures, surgeries, bills, decisions and heartbreaks, following us wherever we went, from vacations to dinner parties. My story is only one perspective of this very complex process - all experiences are unique - but I know I learned a lot about managing the practical challenges of IVF and the emotional and physical baggage of infertility. My hope is to share my most valuable lessons to help those who are thinking about, starting, or going through IVF right now.

Important caveat: I was definitely a poor responder - low numbers of follicles, few mature eggs retrieved, poor survival rates, and lower quality embryos - so some of my experiences may not apply to others. Hopefully some of it will still be helpful. Sharing of additional (or differing) thoughts and advice is welcome in comments below!

Another caveat: Despite our repeated failures, and the many negative emotional and physical experiences we had (described below), I can reflect upon and realize there were several surprising positives that emerged:

• I discovered in myself a resilience and toughness I didn't know I had.
• I learned that I could actually slow down sometimes, back off, sleep more, rest...and still feel like the productive, vibrant, active person I always try to be.
• I learned a lot about fertility treatments, testing, and decision-making, and enjoyed being an active participant in my treatment plan.
• I gained a new appreciation for my partner and a better understanding of how he handles tough news and hard decisions; we didn't always agree, and sometimes got frustrated trying to deal with our different approaches, but in the end I think we respected each other more and understood each other better.

Now, the (hopefully) helpful stuff:

• I thought this website was really useful when I first started: https://www.tapgenes.com/blog/the-ivf-survival-guide-10-things-you-and-your-body-need/
• Keep a "diary" of each cycle. I had an electronic note on my phone (I used Evernote) where I wrote down a whole variety of things, both objective and subjective, practical and emotional; for instance, I recorded the important information from each appointment (e.g., medication dosages and timing, changes to our calendar, preparation instructions for upcoming procedures), results of each ultrasound and blood test (e.g., # of follicles > 10 mm, lining thickness, estradiol level), how my body felt, what I ate, how much I exercised or slept, arguments with my husband, my fears and anxieties, moments of joy and excitement, and times of despair. Recording objective results helped me keep track of how each cycle progressed and make comparisons among cycles. This would have been hard to do had I not kept such detailed records. Having that information allowed me to be be an active participant in the decisions made about my treatment plan; it was also reassuring when I could look back and realize the physical symptoms I was having were ones I had felt before. Writing down my feelings was mostly just cathartic, but it gave me a sense of control over the roller coaster of emotions I was experiencing.
• For me, it was so much easier to tell my colleagues, family, and close friends. I started by telling just my supervisor and family members, but it quickly became burdensome to try and keep it from others; for instance, when I had to cancel all my patients (I'm a physical therapist) for the day of egg retrieval only 36 hours ahead, it was easier to just tell the aides, other therapists, and scheduler the truth (instead being treated like a flaky and irresponsible employee, I was treated with compassion). Not only that, but the outpouring of empathy and love I received was heartwarming and uplifting; so many people reached out to tell me about their own struggles with infertility and offer words of support. At work when I was distraught about bad news, cramping and bloated after a procedure, or just frustrated and emotional about everything, it was nice to not have to pretend to be perfectly content - my colleagues and (close) patients understood.
• Buy a pill organizer box. Best $5 on Amazon I ever spent: https://www.amazon.com/gp/product/B000EGKTEW/ref=oh_aui_detailpage_o00_s00?ie=UTF8&psc=1; throughout my cycles I took synthroid, DHEA, CoQ10, prenatal multivitamin, and baby aspirin; at various times I was taking twice daily oral estrace, vitamin E, and vitamin B complex; a few minutes on Sunday spent parceling them out into each day's AM or PM box meant that I never forgot to take a pill.
• Be aware of all the hidden costs, particularly if you end up needing to order more meds than they plan for and if your bloodwork isn't covered by insurance. Although 3 of our cycles were under Attain, UFC's refund program, the cost of meds, bloodwork and non-covered procedures totally caught us by surprise. I had an unexpected hysteroscopy (polyp removal) before cycle 2 that wasn't covered by insurance or Attain, our meds cost between $5,000 and $8,000 per cycle, and the bloodwork I had done at UFC (instead of at a provider, like Intermountain, covered under our insurance policy) totalled >$1,000 for 3 cycles. Our calendar always had 10 days of stimulation planned, but in all 4 cycles we ended up stimming for 13-14 days; those extra days add up to a lot of additional cost.
• If you are a poor responder like me (e.g., low AMH), do not assume that the highest dose of everything (Menopur, Gonal-F, HGH) plus 6 weeks of estrace priming, is the only way you'll have success. We tried this for two cycles and got disappointing outcomes (only 1 embryo in our first cycle, 2 poor quality in our second). In addition, these super high doses and tons of gonadotropins resulted in a rapid rise in my E2 level during stims, followed by a sudden drop in E2 two days before egg retrieval. Unfortunately this drop correlated with a very low number of mature eggs retrieved. Instead, my doctor decided to try a less conventional protocol with our third and fourth cycle: she started the cycle only 2 days after our negative Beta test from the previous cycle, to capitalize on the "priming"of my system from the previous cycle, and started me on a low dose of Menopur only; she then gradually increased the Menopur dose, and after a few days started adding Gonal-F. We didn't use HGH, nor did we use the same high amounts of Gonal-F as in the previous cycles. We ended up stimming for about 14 days, but at much lower doses and fewer meds (which meant fewer injections and less $). We got the highest number of eggs and maturity rate on those last 2 cycles, yet it cost us less and was much more tolerable (also, my E2 never dropped). As much as doing back-to-back cycles sucks, it could mean better outcomes and less cost overall.
• Don't be afraid to give yourself your shots. Weirdly and wonderfully empowering. I spent an entire cycle terrified of giving myself shots. But then I realized how much more efficient and less stressful it would be to do it myself (i.e., no longer having to wait for my husband, or awkwardly try to find a close friend to stick a needle in my bum when he went out of town). Subcutaneous shots were way less scary and painful than I first thought. My tips: after prepping the needle and swabbing your skin with alcohol, pinch your belly and just plunge the needle in (don't hesitate!) then slowly press the plunger until it's all out (don't stop early). As for the PIO shots (definitely scarier because it's an awkward spot and the oil is thick, but if you prep adequately, it's easy): I warm up the shot on a heating pad or next to a warm lamp, ice my bum for 20 minutes with an ice pack, stick the needle in with the hand on the same side, stabilize the needle, then slowly press the plunger with my dominant hand, followed with a heating pad and a nice self-bum massage. I got the confidence to do it when my friend bailed at the last minute while my husband was on a work trip, and watched this very calm and reassuring woman on YouTube give PIO shot to herself: https://www.youtube.com/watch?v=7CUc6nNwaJU. Also, I was always a little scared I'd get the dosage or mix the medicine wrong, so I took my time with that too.
• More tips on PIO shots: start with an ice pack to your upper glute (stretchy pants help hold it in place) for 20-30 minutes; meanwhile, prep the shot (18 gage needle is for withdrawing the oil from the bottle, switch to a 25 gage needle for injecting (although our provider suggested a 23 gage needle, the 25 is a little thinner but still dispenses the PIO fast enough if it’s warm); get it warm (armpit, heating pad, or near a warm lamp); lie on your tummy for someone else to inject or stand and take the weight off of your leg if you're doing it yourself; find the nice meaty muscle in the upper outer quadrant of your glute; stick in the needle and very slowly press the plunger until it is all out (this takes longer than you want it to), following a heating pad or hot water bottle to the spot for 20-30 minutes

• Try a healthy diet...but don't beat yourself up. I read a bunch about foods that promote follicle growth and determined that the best diet includes lots of legumes, berries, iron (leafy greens, spinach, fortified cereals, peanut butter, raisins), and omegas/DHA/good fats (almonds, cashews); low in dairy, gluten, sugar, and alcohol. (Granted, evidence for many of these claims is mixed at best, anecdotal at worst. But none of it seems harmful or unreasonable; see: http://www.fertilityafter40.com/9-fertility-wonder-foods-separating-myth-from-fact-to-get-pregnant-faster-naturally.html). Although I was reassured to learn that my typical diet checked most of these boxes, I also spent plenty of nights downing handfuls of chocolate chips and a few too many spoonfuls of "healthy" peanut butter. But that's what happens with massive amounts of hormones flooding your system and the emotional roller coaster of good/bad news on a near-daily basis.
• When it comes to exercise, ask your doctor directly. Also realize that the unsatisfactory "Listen to your body" response is probably the most legitimate. Because every body responds differently to IVF, every body will handle exercise during IVF differently. My experience might not be the same as others (especially better responders), so again, ask your doctor. Definitely do whatever they recommend (I am not here to give medical advice).

Fitness and regular activity are a huge part of my identity, mental health management, sense of self-worth, social life, and relationship, so I didn't want to give up exercise unless there were good reasons to do so. I also wanted to know what kinds of exercise would be better or worse to do. I asked my doctor (who is an avid long-distance runner herself) what specific things I needed to be concerned about when it came to exercise at each phase of the IVF cycle. Here is what I figured out based on her evidence-based advice and my personal experiences:

• Risks of exercise during stimulations are ovarian torsion (dangerous) and ovarian bruising (problematic for screening purposes) because your ovaries become so enlarged with follicles. Ovarian torsion can happen with high impact activities like running or jumping, and possibly twisting exercises; her example of ovarian bruising happened when her patient was riding a spin bike and her legs were hitting her belly. Heart rate and body temperature are not a concern. For me, my follicle growth was so slow and minimal overall days 1-5 I continued exercising like normal (elliptical, rower, road bike, jump rope, kettlebells, weights), but at day 6 I decided to play it safe with low impact exercise, but my intensity level stayed high. I experimented with reducing the duration of my exercise during cycles 2 and 3 to see if less exercise meant faster/greater follicle growth, but no. In fact, I produced the most follicles and highest number of mature eggs during my 4th cycle, when I had returned to my full daily workout routine (probably because of the build-up of hormones in my system, not because of the exercise, but it certainly didn't have an adverse effect).
• No one ever gave me a satisfactory reason as to why two "Princess Days" after transfer were important. At Utah Fertility Center (where I did cycles 2-4), their standard practice is to recommend no exercise and rest for two days after transfer. In addition, they recommend no intense aerobic exercise or weight lifting until pregnancy test. At the Utah Center for Reproductive Medicine (where I did cycle 1), there are no such guidelines. My doctor admitted that there is no evidence to support rest after transfer. She had no problem with me going back to work the next day (I am a physical therapist, and on my feet most of the day) but suggested I refrain from exercise just because it was the clinic's standard. During cycles 2 and 3, I dutifully held off on exercise for two days after transfer, and did only low impact < 1 hour of exercise for the next 8 days. Implantation failed during both cycles. For cycle 4, I took one day off (though still grocery-shopped and ran errands); the next day I took the dog for an hour-long walk in the park, did some gentle yoga, stretching, core stabilization, and arm weights; and the third day went right back to my normal workout (including jump rope and kettlebells). Implantation was successful that cycle. I know that luck is a huge part of all this, but I do really believe that whatever you can do for self-love, self-nurturing, and self-care is important. For me, that was exercising (within reason) and being positive about it. My husband always liked to say that "Princess Days" meant that you should do whatever makes you feel as special as a princess - no stress, no worry, just do what sounds fun.
• I believe exercise during early pregnancy can be healthy if done right. I really appreciated this blog from a Crossfit mom regarding her levels of exercise during her early pregnancy. Although not specific to IVF, I thought her approach was reasonable, scientific, and reassuring http://wodathome.com/a-first-trimester-review/.
• Get your partner involved in a way that works for you. No way around it, you will bear the brunt of IVF treatments. You will directly experience the hormone-related physical and emotional changes. You will have to go to all the ultrasounds, blood draws, egg retrievals, and transfers. But if you can find a way to share the load, it will be a more positive experience for both of you (i.e., less resentment, more bonding opportunities, more feeling like "we're a team"). My husband agreed to be responsible for the ordering, inventory, and organization of all the medications, preparing and delivering the shots whenever we were both home to do them, chauffeuring to and from egg retrievals and embryo transfers (you won't be allowed to drive, anyway), coming to the important appointments, and joining in on weighty phone conversations with our doctor. I went solo to most of the ultrasounds and blood draws because it was actually easier for me to go on my own time, and he was often too distracted or stressed about work when he did come. Our arrangement was ideal because it allowed us to actually bond and connect on the way to/from and in the waiting room those less frequent, important appointments. I also appreciated that I usually didn't have to force my overly tired brain to measure out medications at the end of a long day.
  • Ask your doctor to do a mock embryo transfer. We had a really difficult first transfer because they weren't aware that I have an unusual internal anatomy, which made positioning the catheter very difficult and time-consuming. By doing a mock transfer, my doctor could practice and learn the necessary orientation of the catheter and the best type of catheter to use; she also discovered that if I was fully sedated, my muscles would relax and allow for a more easy transfer.
• Make the most of those mandatory days off. Egg retrievals, embryo transfers, polyp surgeries, Princess days...Your energy levels and activity restrictions may vary, but these days can actually be a fun, relaxing, rejuvenating break from the stresses and obligations of regular life. Bake, nap, cook, read, watch a movie, walk your dog, practice yoga, re-organize your sock drawer!...Anything that sounds pleasant and takes your mind off things. Egg retrievals and other surgeries will require general anesthesia, so expect that you will be pretty out of it for an hour or two afterwards - and you won't be allowed to drive for the rest of the day. I usually dozed in the car on the way home, then crawled into bed for a 2-3 hour nap. Depending on my symptoms, I'd spend the rest of the day walking or playing Frisbee with my dog, baking a variety of treats, and calling long-distance friends. After one very early morning retrieval I felt no symptoms and no fatigue, so I happily went of to the gym for a workout while my poor husband had to go back to work. Embryo transfers don't usually require anesthesia, but you'll probably be asked to rest for the remainder of the day (and if they give you Valium you'll be pretty sleepy). My transfers were in the afternoon, but I'd always still take the whole day off work. I'd sleep in and exercise beforehand, then plan for a nice dinner at home and a movie afterwards. News that follows these days can sometimes be hard to take (e.g., # of mature eggs, # fertilized, embryo survival rate), so make a list of things you can do on those mellow days and look forward to them.

• Don't feel bad about turning down invitations to events, like baby showers and kid-filled holiday parties. I really liked the advice in this Huffington post article about surviving the holidays for those going through infertility and for their friends and family: https://www.huffingtonpost.com/mary-hinckley-md/infertility-coping-during-holidays_b_1120336.html
• Beware the dark hole of online forums and support groups....and learn the lingo. Though really helpful at times, I too often found myself scrolling through forums late at night when I should have been sleeping, hoping to find some encouraging news regarding my latest symptom or outcome (..."Brown spotting before HCG test?" "Only 8 eggs retrieved"...). Information can be reassuring and comforting, but sometimes it's better just turn off the computer, get your mind off of it, rest, and wait. Learning the acronyms and abbreviations of the infertility world makes you feel like a pro, too. I found these websites very handy: https://resolve.org/infertility-101/infertility-faq/infertility-acronyms/; http://www.fertilityplus.com/faq/acronyms.html; and https://www.shadygrovefertility.com/blog/diagnosing-infertility/learn-the-lingo-infertility-acronyms-and-abbreviations/
• Do not underestimate the impact that multiple cycles will have on you, both physically and emotionally. Not everyone will respond the same way, but for me, multiple back-to-back cycles meant: weight gain (~15 pounds), decreased fitness, acne, bloating, damage to an already frail body image and self-confidence, extreme emotional lability, fights with my husband, weird intense work crushes, strained friendships, occasional self-loathing, depression, and frustration. At various times I struggled with injection site bruises, swelling, muscle knots, and nerve pain. I often hated the way my body looked and felt. Others might be able to keep present in their mind that "this is all worth it" and feel pride, joy, excitement, anticipation....but I was not one of those people. Good news was usually short-lived, and the emotional roller coaster from highs to lows just left me exhausted. (All that said, I realize how incredibly fortunate we were to be able to afford so many cycles, thanks to our healthy savings and qualifying for a refund program. I don't regret any of it, just wish I'd been more prepared for it.)
• Remind yourself loudly and often that this is not because of something you did wrong, it is just bad luck. You did not cause this because of what you did or didn't eat, because you exercised or didn't exercise, or anything else you did or didn't do. I would smile and bite my tongue when well-meaning people would offer up uninformed, unsolicited advice about the one thing I needed to do to fix to my infertility ("Relax. Meditate"; "Take evening primrose"; "Eliminate dairy and gluten" and "Eat full-fat dairy"; "Stop trying so hard";... Huh??). I would thank them for their input and say something like "I really have been looking at and researching everything. My doctor is very smart and experienced, and I really trust her to provide us with the best treatment there is."
• Find people going through the same experience (thank you UIRC Facebook Group!). You will get plenty of clueless comments that will irritate the snot out of you. Some of my (least) favorite: "Everything happens for a reason"; "If it's meant to happen, it will"; "You don't have any kids? Well, don't wait too long! And you know, Utah is a great place to have kids...." Try to ignore them and feel free to rant later. And you have a right to feel equally irritated when your friends with kids say something trite, like: "Isn't it crazy what we do for our kids? That's what life is about, right? Compromising for our family?" Well, maybe, but it can feel so unfair when you have to sacrifice and "compromise" and still may not get a family at all.
• If you're like me and don't have any children, find an answer to the question "Do you have kids?" that you are comfortable saying again, and again, and again...because when you're going through IVF, that relatively benign, friendly question will sting more than it should. My responses depended entirely on my mood and the latest news: "No...maybe someday!" (Smiley face); "No...still trying" (Hopeful face); "No...we don't" (Please-change-the-topic face); "No...that would take a miracle" (Sad face).
• You do NOT "have to" do another cycle if you don't want to no matter how many people tell you this or how many times they tell you this. Your friends, family, coworkers all mean well, they're trying to encourage you and give you support, but sometimes it feels like if you give up because you are just too emotionally, physically, and financially exhausted, that somehow you don't really care enough. Truth is, you are human and you have a limit. You have to make decisions that make sense for you, your family, and your partner, not for the outsiders looking in who don't know or understand what you are going through...
• ....But, also realize that you are really tough and really strong! Whatever type of infertility journey you are on, be proud of your resilience despite the challenges you face, and relish the little victories when they come.

Our stats:

Started TTC in February 2015; started oral meds (Clomid, Letrozole) followed by Menopur in December 2015; started IVF February 2015

Cycle 1 February 2017 (at UCRM): Menopur, Gonal-F, HGH; retrieved 8 eggs; 6/8 mature; 5/8 fertilized with ICSI; 1 survived to blastocyst (grade 1 quality); transferred 1 fresh; 8mm lining = BFN

Cycle 2 July 2017 (at UFC): Menopur, Gonal-F, HGH; retrieved 6 eggs; 3/6 mature; 2/6 fertilized with ICSI; 2 survived but did not make it to blastocyst (poor quality); transferred 2 fresh; = BFN

Cycle 3 September 2017 (at UFC): Menopur only to start, gradually increased, then added Gonal-F; retrieved 8 eggs; 8/8 mature; 7/8 fertilized with ICSI; 2 survived to blastocyst stage (1 good quality, 1 "reasonable" quality); transferred 2 fresh = BFN

Cycle 4 October 2017 (at UFC): Menopur only to start, gradually increased, then added Gonal-F; retrieved 10 eggs; 8/10 mature; 7/8 fertilized with ICSI; 2 survived to blastocyst stage (1 good quality, 1 "so-so" quality); froze both embryos; FET January 2017 (lining 7.5 mm) = HCG 157 at 10 days post-transfer, 265 day 12, 565 day 17; 829 day 20; MC started day 23.