I am always very surprised, once I start talking to people about it, how many women have approached IVF or some kind of infertility or fertility treatment. This is a laundry list of things I wish I had known before infertility and IVF. None of these are going to, I believe, change the outcome of what happens, but it may make preparing for and managing the process a little bit easier. This is simply an agglomeration of some of my own experiences and thoughts, it is not meant to be a medical opinion.
1. IVF is sometimes a diagnostic and only sometimes an enabler.
I think there is a misconception toward IVF. People who have not been through it tend to see it as "that process that helps women have babies". This is actually only partially true. IVF works by circumventing the barriers to pregnancy. By increasing the number of eggs produced and fertilising them with the best sperm, IVF circumvents the issues related with poor quality sperm, lower quality eggs, inability to ovulate or fertilize and the low probability of pregnancy associated with these characteristics. However, IVF does not by itself, make pregnancy possible, nor does it inherently change any of the fertility issues that men and women have. The process of IVF may be not so much "making it happen", as "good enough to get across the line".
There is both good IVF and bad IVF. Good IVF is where you make plenty of eggs, your partner does not have sperm issues and you succeed with twins on your first try. Bad IVF is where you are resistant to the medications, the eggs are poor quality or unavailable, the fertilization rate is poor and you go through three, four cycles with discouraging results and failure. The general characteristics of your age, egg health and reserve, grade and number of embryos broadly determine your skew toward Good or Bad IVF. However, since it is almost guaranteed that you will have inherently something amiss (since you wouldn't be here otherwise), the reiteration of any single batch of eggs and endometrium lining and hence to some degree, pure luck, plays a huge factor in any given IVF cycle. More often than not, rather than enabling, IVF will be discouraging because despite the diagnostic quality of the process, there may not be a particular solution to your given issues, so it can feel like a process of more barriers.
2. I wish I had known to properly estimate the emotional costs of failed procedures.
I think if I had started by thinking of ART (assisted reproduction therapy) that way, I would have saved myself a lot of heartache and pent-up optimism. I would probably have spent less time doing IUIs. It took us a full 6 months to get through 3 IUIs and almost a year to get through the diagnostic and waiting period for IVF. My mental state a year and a half later, both in terms of being mentally positive and physically enduring, was substantially more bleak and worn down than when we began. I found myself wishing the process would end or succeed purely because I was running out of steam.
The balance between being non-intrusive (IUIs are considered less invasive) and success is a fine one. The number of IUIs or how long to wait till IVF is a very personal decision, because of course, we would all like to succeed with as little intervention as possible. I would read carefully the medical debate, available online, as to whether medicated IUIs or non-medicated IUIs are a waste of time, meaning that, the additional use of drugs does not generally increase your potential for success because it does not get to the heart of the quality, or cellular, problem. The general idea is that if an IUI would work for you, it will work unmedicated, or even with just Clomid and timed intercourse. If it does not work, there is a fairly low statistical chance that your issues will be overcome by an IUI.
Just from my own personal perspective, I would say that I do not know of anyone who did IVF in their 20s, who did not succeed on their first try. That statistic falls drastically in your 30s. Also, having gone through both processes, medicated IUIs require about 5 days of injectibles. IVF is 14 days of injectibles, arguably, at a higher dosage. For the added pain, you receive a much more comprehensive idea of what quality of eggs and embryos you have and a certain fertilization, as opposed to simply being a vessel for more efficient sperm, possibly just swimming around in the dark. If you are going to do the injectibles, it may be more worth it to do an IVF rather than two medicated IUIs.
3. Ask questions of your doctor, keep records of the process.
This may sound fairly obvious, but bear in mind that doctor's waiting rooms are tedious and the visits can be hurried. By the time it is your turn, you might be already physically or emotionally fatigued. Unless you record down the numbers, such as, antral follicle count, medicine and dosages, efficacy of medication, endometrium lining, size of follicles, these records sometimes disappear or blend into each other as time moves on.
Your hospital records should be open and available to you at any time, but some places do keep such records confidential and you may not be able to take them with you, when you want to get a second opinion or change clinics.
There is a human tendency to try to deflect the situation or hope that your doctor will take responsibility for all your treatment and reminders but the truth is that if you have decided to proceed, you have to be committed to the process. If you have doubts about the medical protocol or its efficacy for you, it would be wise to do your own research and make sure your doctor treats all your questions, whether they are about medication, or additional medication and process, as valid. Each cycle is a dynamic process and hence the protocol should be similarly individual and tailored but depending on your clinic, they may subscribe to a "one size fits all" or "works for the majority" process because of time or crowd constraints.
4. Question the embryologist and get the best doctor possible.
Notice that I did not say the best doctor for you, I said the best doctor possible. I sincerely believe that you must trust your doctor and their process. If you don't like your doctor or are made uncomfortable, it will make the entire process very difficult to stomach.
That being said, this is a medical process, it is a laboratory process and it is a farming process. It has inherently, a very high attrition rate in viable and healthy eggs, with an intangible understanding (from a layman's perspective at least) of what is good enough to get you across the line. If the doctor is not able to deliver you the results you want, then they have failed — it is as simple as that. At the end of the day, no 'nice' doctor is worth your effort, health and money, unless they are equipped to manage and influence the outcome. You must believe in success stats and you must have a real fertility specialist, and a real doctor, is one that is open 24/7 if and when it is suitable and best for your fertility needs.
If you get to the stage of embryos and when the embryologist takes over from your gynaecologist, they do so almost completely. All the decisions regarding the number and maturation of embryos, the grading, replacement of embryos at transfer, are ceded from your doctor, to the embryologist.
Hence, it is important that they know who you are, and what your context is. If you are a poor responder and each embryo is thus very difficult to come by, they should know that. If you are deeply against multiples, they should know that too. If your priority is preserving the embryos for some kind of transfer, be determined and aggressive.
In my first case with embryos, my first conversation with the embryologist, was entirely late, after we already had cleaving embryos, and began with her asking "actually, why are you doing IVF?". When that cycle ended without a transfer because the embryos were too poor in quality, she had nothing conclusive to say to us except that indeed, we are ideal candidates for IVF. It made me realize that these are busy people, and if you don't talk to them prior to your procedures, then you shouldn't expect to get any time with them after.
5. Get buy-in and control your tempers at the clinic.
There are actually two layers to infertility and IVF. The first is the infertility, which is the over-arching state, meaning you do not conceive at all, or easily and you do not probably yet have children. I've written at length about how this can make you feel emotionally, but in terms of flexibility and lifestyle, as much as none of us want to admit it, there are some compensating factors to not having children.
The second layer is IVF itself, or the process of any kind of medical intervention. This has an entirely different feeling. While infertility can feel despairing, IVF feels limiting because of the scheduling involved. While infertility is a background if omnipresent tinge of sadness and 'no news', IVF is very much in your face, with the blood tests, injections, doctor's visits, and the immediate frustration of good news and bad news. While infertility is painful because there is 'nothing you can do about it', medical intervention is painful because 'what do you do now'.
While the fragility and insecurity of infertility flares up mostly around pregnant women and insensitive comments, the anger and resentment in IVF can burn in a far more impatient way, because IVF is run in a 24 hour, 48 hour, 72 hour, 2 week and month-to-month cycle that can really make the short end of your patience burn.
When I say buy-in, I mean things that would help make the medical process easier on yourself. Get to know the nurses at your clinic well and ask them to help you manage the waits or the instructions. They are often very sympathetic but you need to be the one to ask for the help or support.
I also mean, if this is relevant to you, buy-in from friends and parents. For a very long time, because my mother was clueless about science and IVF, I simply didn't bother to educate them, either because I didn't want to rehash my own sadness, or because I didn't think they could help and it would just be a burden for them to carry.
However I am a compulsive planner and I am that way because my parents are compulsive planners. In that way, they were unable to help nor really understand, the heaviness or numbness that was sometimes the result of the process. They were unable to understand why I was so hormonally crazy or unreliable and often, hiding the frequent medication or family demands, like a dinner that clashed with a procedure they didn't know about, frustrated me and stressed me out unnecessarily.
Make these changes to buy-in and support before you begin the process. The whole thing can be crazy and unfair. You don't need anyone who makes it any harder for you and if that someone is you, then you have to stop doing it to yourself.
6. It is normal to feel ambivalent and detached.
The nature of the beast, is that you feel emotions that you are constantly surprised by. There were many days when I would ask myself, even while in the clinic, with my feet in stirrups, 'is this what I really want'? There were many times that I did nonsensical or immature or OCD things. Many times when I railed and whinged at my situation and wanted to throw away all the meds. Many days when I just wanted to keep drinking tea and coffee, and eating fried foods, although part of me would then be terrified of the stimulation results.
There were many mornings when I didn't want to get out of bed, when nothing I would do that day would feel, indeed, be meaningful at all. Don't sweat it, or let anyone make you feel bad. Just as pregnancy or having children, if you want them, is your due, this process, is also your due. You can't be rational and sensible through it all, and not being so doesn't mean you are 'losing it' or 'not dealing well'.
7. Change is required, not just from reproduction.
It took me a long time to figure this one out but I wish I had earlier. For myself, these changes were three-fold. The first was a diet change, to be more aware of eating grains and less refined sugar. This was motivated by wanting to improve our egg and embryo quality, but it was also driven by the second change, which was weight and body image.
Before we started on the IVF process, I slimmed down by about 3-5 kgs in preparation, which is not much given I have a fairly tall and athletic build. The increase in weight was something that had happened unconsciously and gradually from when I was in my 20s, as I began work and a more sedentary life. I was glad I finally did something, because you definitely put back the weight and bloat through the IVF process.
However, the bigger issue is that I would curb myself from exercise because I would play that game of "maybe I'm pregnant". Maybe if I swam, it would fall out. Maybe my exercise was not light exercise enough. Take it from someone who is pretty young and healthy, symptoms are just that. There is no such thing as pregnancy symptoms, especially when you are on progesterone. They are designed to work with your mind. The awkward feeling of limbo, is most certainly the need to pee or constipation, it is not your womb expanding with babies.
Those times were rife with people telling you what to do, eat less meat, eat less gluten, eat more eggs, eat more veggies, drink less juice, I think I tried to do everything and more often than not, it wound up that I did nothing, exercise-wise. I finally got into a routine of actually pushing myself in exercise but honestly, I don't know that any of those things made a difference — my point is that during these times of uncertainty, not second-guessing myself and feeling more in control, made me feel a lot healthier and better about myself. You need to find what makes you feel better about yourself and do it.
The second change is a more touchy topic and it involved responsibility changes within the marriage (if you are married). I hesitate to generalize here because every couple has different ways by which they determine independence and emotional or financial contribution but I actually think this is a very important issue to bring up. Clearly, going through infertility, let alone IVF, will take some toll on the marriage.
Sometimes, many times, people can be selfish in their grief and in their pain. I remember the many, many times that I complained to my husband and it was never 'Simon Lee's wife is pregnant'. It was 'Julia is pregnant' and 'Adeline is pregnant' and 'Randy is pregnant'. On one hand, I don't think he ever truly felt it the way I did, because he could not relate to these women the way I could. He could not also relate to pregnancy the way I could, in the sense that while he acknowledged and realized that women everywhere were getting pregnant, this was not something he could anyway, do. Not something he had ever grown up thinking he would experience or have in his life.
I guess what I was really saying was, these people are all on their road to parenthood and our baby, which I'd lowered myself to thinking about by any possible means now, was not even in sight. What I was doing was mostly, making him feel sad for me and also helpless at how to assist, or correct such a situation. I never felt any of the difficulty in conceiving was his fault, but that did not make the situation, or for that matter, being my spouse, any easier to bear. I think what would have helped me feel better was if he had taken my hand and said, our turn will come. We will have a baby and a child some time in our lives, we will make it happen, if it does not happen naturally. Don't worry.
It would have helped for him to be part of the situation, for example, had he presented me with the adoption forms, all filled out, had he jumped in in the numerous emails that went back and forth between the egg donor clinic and myself. If he had asked his own questions about the process, I would have been impressed. I would have felt cared for, and supported.
As time went by, I often resented what he did not do. It made me feel (or maybe recognize) that he wanted this child and this life together, less. It made me feel that he had an off button to these feelings, while I just burned on. I'm not sure that is true, or even if it is, whether there is anything wrong about it, but sometimes there's a big gap between what is, and what it feels like.
At the beginning I felt ambivalent for imposing on him, since most of the process involves mostly the female and not the male, but what really helped, as time went on (and which I wish we had done from the start), was for me to point out to him that he needed to be more engaged with the process. We identified tangible and specific things he could do to help. For example, researching the medications became his responsibility, as was liaising with the nurses and the embryo donation clinics, although researching the embryo donation process remained my responsibility. Even though I did most of the IUI process on my own, when we moved to IVF, I asked him to take more time out to shoulder the responsibilities.
This process does make you stronger. Part of that is finding your ability to pick up the pieces, to have the patience, and endurance to soldier on. Part of that is your willingness to sacrifice and juggle responsibilities, or see through to what you find most important about life. And part of that, is the strength to speak your mind to tell people what you need, and make choices.
8. Ice your stomach before injections.
Typically, the first few days of a stimulation period feel the best. You are full of hope for a good or better result and the medication is not taxing yet. At some time during the process, the doubt will set in, as will the feeling sorry for yourself and like you are a sick person. This feeling increases as the days drag on, the needle holes multiply, your body starts to feel the toll and your skin becomes more sensitive. It will make you feel worse, if you also look bruised.
Having done this countless times, I find the best way to reduce the pain, the feeling and the swelling, is to be conscientious about icing your stomach for a full 15 seconds with direct ice or a frozen ice pack, as opposed to just a gel pack, then dry with a towel or paper and swiftly use the alcohol swab and injection syringe, before any feeling returns to that area. I found that nurses all teach you to pinch your skin, but many omit the icing, which makes a huge difference to both your ability to feel anything and the calmness of your skin afterward. You can hold down on the prick point and ice it again afterward to prevent bruising. I also use a deep enriched moisturizer on my stomach and inner elbows every night, for a month before and after any IVF cycle and I find that helps my skin repair and thicken very well.
9. Clear your schedule.
When we first began IUIs, I was always inclined to have it be as little an intrusion as possible. This was perhaps because I was concerned at infertility taking over our lives. I wanted my life to be as busy as usual and I didn't want to appear weak in other areas of my life.
But over time, I have realized that IVF, is not just another thing that you do. Practically, it actually takes up a lot of time and stress, and beyond that, you are on meds that change your appetite, your mood and the dreams you dream. I think I was unprepared for the way the emotional collateral damage would spill over into other areas of work and activities. It is so consuming that often, meeting up with people who did not know or were just for social purposes, felt bereft of meaning.
Having considered this for over a year, I have found that my ability to be less bothered and stressed, is actually correlated with how much I commit to do. It actually takes quite a long time to do daily injections, let alone be ready and have the energy to get up and go, right after you're done. I found that giving myself a 30 min break afterward really helped to relax and ease my state of mind, but that is hard to do if you are rushing to work or rushing out the door. When I tried to schedule too many trips, whether for work or to 'get away', I became more agitated about the results of scans and cycles, which would determine whether I could go on those trips, or the logistics of rescheduling.
When I tried to squeeze in acupuncture in between or before, work and meal appointments, I was easily tired from driving myself from place to place and in a worse mood for it. Conversely, when I just took the day off work, I slept better, got to acupuncture early, manage to run errands and make it to the doctor's appointments, even if that was all I did for the whole day.
When you are an IVF patient, the truth is that you are fairly low priority in a gynaecological clinic, relative to say, someone in the throes of labour. There were many times when scans were at 9am, or 7pm, because the gynaecologist had another emergency c-section to deliver. Closer to retrieval dates, I would be told that it might be the 8th, or the 9th, then the 13th because the follicles were slow growing. Even if it sounds like that's all your days are about, you need to anticipate that the timing and demands of IVF, as with natural biological cycles, can be changeable and inconsistent and you need to clear your schedule to make it a priority, or at least so that you can continue with the business of living otherwise.
I am on the fence about not working. Many people don't have this luxury, yet others hesitate to make the choice to stop work or to take a sabbatical for this purpose. While it is true that a major source of stress can be from the workplace, a bigger source of stress for me, was the IVF process itself. There were also many times when I felt very grateful for both the distractions that interaction at work and concentration on work afforded, as well as the health and medical benefits that I derived and badly needed because of the medical treatments.
What I am not on the fence about, is having to balance and prioritise working — in my case, for awhile, the twin anxieties of both work and IVF built themselves into a monstrous professional and personal crisis, which I believe was not necessary. The best advice I received, paradoxically, was from an older and cynical competitor. He told me "you can have a professional crisis, and you can have a personal crisis. But don't let a personal crisis become a professional one or vice versa, because you should never make the mistake of thinking they are the same thing".
10. Be prepared financially and don't take on extra leverage before IVF.
Back in the day when we were still naïve about how long we might be here, I was much less careful with medical bills because I thought each would be the end of fertility treatments. The range of how much it will cost can be substantial, it can range from as little as $2000, to several cycles of $20,000 each.
Make your preparations early with regard to insurance coverage, co-payments or in your personal finances to accommodate the worst-case of how much it will cost, because the costs can be both hefty and non-stop. Looking back, I wish I had planned to use the govt co-payments that we are entitled to, better, as I actually have budget left there, but couldn't use it when we had to switch from public to private care. We bought a house, during the course of the IUIs. Of course, later when I contemplated my work, I felt burdened by more liabilities and we were mired for months in renovating and renting out the new place. In retrospect, that was a bad idea.
11. IVF is waiting and it is not the antithesis of hard decisions.
When I first began this process, I was motivated and excited about IVF, and it was because I was tired of waiting. Hadn't I been waiting already, so much longer than everyone else? IVF seemed like it was, to me, the hard decision. In retrospect, that wasn't very accurate.
It was the beginning of a gradual process of stimming, retrieval, fertilization and embryo quality. We waited anxiously for a series of results and then had to make hard decisions surrounding them. Whether to wait for a five day, or go ahead with a transfer for a three day. Whether to go back to private care when public care failed to produce results. Although it was at times physically tough, it was more the mental stress (seeing yourself with an IV drip, when embryos start to attrite away over the time they are cleaving, making and waiting on those tough go/no-go decisions) which made me require support, gentleness and often, tolerance from particularly the husband, but also people around me.
During the transfer, I told myself that it was 50/50 whether it would work and the reality was no one was any the wiser. I wasn't devastated when it didn't take. But I didn't rationalist to myself and I was shocked to realize, that we were back to Square 1, when it did not. This is the part that can seem surreal, that the milk in the fridge hasn't even expired before it is game over, even though it took 3 months to prepare for and get through a transfer.
IVF does not always provide closure — when I begun, I thought it was writing off the close of our chapter, not the more sensible notion that it might work, but it might take time. Three or four more years — maybe more. Add that to pre-IVF infertility and it could be a decade of infertility permeating your every waking thought, which is totally destructive to your own life. Do not be surprised if it hits you, if and when you get to the point where you say 'enough is enough' before you use up your allocation, or are prompted to stop even while you wonder if the next one would have turned into the baby.
Do you have any tips, about what made this process easier for you? If you do, please write me as I would love to hear and share your helpful suggestions.
