Each couple going through infertility has their own story, their own timeline and their own version of those events. No matter how long you struggle with fertility, whether it took you a year, 10 years, or you were never able to get pregnant. It’s your own journey and your own struggle. My favorite quote is “stop comparing yourself to others and starting comparing your today to your yesterday”. This can apply here too. Just because your journey may not have been as bad as someone else’s, it doesn’t mean that it isn’t the HARDEST thing YOU will ever go through. Never feel guilty for being angry, sad or frustrated and never compare yourself to others. It’s YOUR story.

That being said, this is ours…

It all started a little less than a year after my husband and I got married. We decided we were ready to start a family. I never imagined the journey we were about to embark on. Over 2 years of fertility treatments and upwards of $90,000 later we had learned so much, so much that I wish I had someone going through the same to share it with.

I learned throughout the process that you’re not alone, that so many of my peers, colleagues and even family members struggled with infertility. Why was everyone so silent about it?! Why didn’t they reach out? Because they too felt alone. I don’t look back at our journey with thoughts of pity, regret or fear. I look back at it as a journey I want to share with others to let them know they’re not alone.

I will admit here that this next portion shows just how naïve I am. I had not been on birth control for years, we relied on the “pull out” method, and we weren’t even very careful with that. It had been far over 3 years that I felt like we had just been lucky.

When we decided we would start actively trying for babes I told my husband that I might need to go the girl doctor, as I call my gynecologist, to get checked out. I knew I had had abnormal periods, pain and a few other symptoms that lead me to believe I had some endometriosis. I thought I just needed to get “cleaned out” and we would get pregnant right away.

I was wrong. Very wrong

Mind you, I’m a nurse. BUT I’m an ER nurse and the things I know the least about are delivering babies and things related to the female anatomy. I pride myself at being as knowledgeable as possible, but I will admit when I don’t know something. This is something I didn’t know. It’s something I never found myself doing much research on. Looking back I wish I had known more, been more authoritative with my gynecologist, demanded answers to my odd symptoms, but you can’t change the past.

So there we were, in my girl doctor’s office listening to her tell me that she doesn’t do the surgeries for endometriosis and based on our history we should probably go see a fertility specialist. Pretty much still in denial here. I mean isn’t that the normal response for most of us? Thinking, nope, not me. They’re probably just being over cautious.”  “Why do they always have to send you to a specialist for something they could be doing themselves?!”

Away we went to one of the two fertility specialists in the area

I don’t know how others do it, but this doctor spent nearly 2 hours with us the first day doing an interview of sorts, a THOROUGH history, and talking to us about the process and our expectations. He was a very matter of fact sort of man. He did not give you guesses or conjectures. He gave you answers. Therefore, he wouldn’t make any diagnoses or plans until both hubby and I went through the battery of testing. In the end he asked us what our goals were more focused on, getting pregnant or alleviating my symptoms? At that point, still in denial, my hubby and I agreed that it was more to alleviate my symptoms, get rid of scar tissue if I had it, and then we could just go about things on our own and get pregnant naturally.

Wrong again. After all of the blood work, ultrasounds, scopes, semen analysis, and a 6+ hour exploratory surgery with lots of scar tissue removed, he had an answer for us. If we wanted to get pregnant we needed to do IVF.

Once again, still in denial. I had him go over all of our other options. He, again, showed us the numbers and our odds. We had a 0.1% chance of getting pregnant naturally and only a 30-40% chance of conceiving with IVF. Even facing these numbers I still said, “Nope, we’re going to do this on our own”. After all, he had cleaned out the scar tissue and he wasn’t even going to give us a chance?!

Going Against Doc’s Advice

We proceeded to do “dinner and dancing” as doc called it for about 6 months with zero luck. I will say that the fact that I was in so much denial actually helped for this portion. I didn’t feel the stress or pressure for us to have sex on a certain day, time or weird position. We actually found it fun and our doc even commended our strong numbers! We were going on dates, spending time doing things we loved and just BEING with one another. But…despite our valiant efforts we had nothing to show for it.

The Next Step

Though doc again suggested IVF, hubby and I (looking back I think it was more of an “I”) decided to ignore doc’s suggestion once again proceed to IUI (intrauterine insemination). Basically, hubby would provide a specimen, it would be spun down and the best of the best would be chosen to be placed, ever so “gently”, in my uterus. You lie there for a bit, get up, go home and patiently wait.

First try…. Fail.

One thing about the entire process is that with every step there is a seemingly endless amount of waiting. It may only be 7-12 days that you’re waiting, but, to you, it feels like a LIFETIME. That first lifetime of waiting resulted in negative pregnancy test after negative pregnancy test and finally the one that decides it all which is your blood test. But it was our first shot, can’t give up that easily.

And…we decided to do it again. After all it was only about $1,500 per round and in the IVF world that’s pretty cheap!

Stimulated IUI – adding some hormones

This time around the doc suggested we try it with some drugs to MAYBE improve our chances. He continued to be very factual with us that he didn’t have a lot of faith that this would work, but he would do everything he could to give us even the tiniest bit of hope. So we took the drugs, tried again, crossed our fingers and prayed.

I was lucky that the drugs didn’t affect me too much and our hopes of this round working were high (doc’s weren’t, but what did he know?…).

With each step we took I had this skewed view that it was going to be OK, that the next thing we tried just had to work and that things weren’t nearly as bad as the doctor kept telling us. I think this helped and hurt me at the same time. I felt like I had a grasp on reality at the time, but looking back I wished I had listed more to the doctor, been less in denial, though more like a nurse and less like a patient. Looking back you always wish you had done SOMETHING different, everyone does, but you can’t think like that, especially with infertility.

 

Try #2 of the IUI failed as well.

My hubby and I gave ourselves 24 hours. 24 hours after each fail, piece of bad news, or just overall emotional blow to cry, scream, binge eat, whatever we needed to do. Then, after our 24 hours we would pick ourselves up, wipe away tears and move on to the next step. I think this is a key piece of advice. I know it’s hard, trust me I do. I know you just want to curl up in to a ball, be angry and sad all at the same time, and just cry. But, you can’t change what happened. There is absolutely nothing that you breaking down is going to do except make yourself feel worse and put even more of a strain on your emotions and your relationship. You HAVE to tell yourself it’s time to move forward and for more reasons that just keeping yourself from falling in to a pit of depression.

“We gave ourselves 24 hours….then, pick ourselves up and move on to the next step”

Your emotions of stress, fear, anger, they’re all tied to your body and your body’s responses. When you have these emotions your hormones are affected, your body goes in to more of the “fight or flight” mentality and it makes it EVEN HARDER for you to get pregnant. So, do what you have to do to pick yourself back up. Whether you choose to meditate, talk to a counselor, run, do yoga, or go on vacation with your hubby to clear your head, do it. Clear your mind and move on to the next step.

IUI #3

Our next step was IUI #3. Yep, I was still in denial and STILL thought I knew better than the doctor.

Doc put us on a bit stronger course of medication that time, and also ordered some more lab test. This time they were looking at some rare and random genetic factors that could be hindering our efforts since even with the medications we were having zero progress and producing hardly any eggs. He also gave us an ultimatum and put us on a time limit of how much longer we could try alternative methods.

As I said, doc was very matter of fact. He was the kind of doctor people either loved or they hated. He told you like it was, didn’t put up with whining or “poor me”, and stuck to the facts. However, over our course of treatment I saw the other side of this “bad bedside manor” doctor. He had so much passion for what he did. He cared so much about his patients and was good at what he did, really good. His level of expertise made him appear cold, but deep down he was very compassionate. He would gently place his hand on my leg when he knew he was doing a procedure that would cause me pain, even when he knew the IUI wouldn’t work he still said in the most sincere way “let’s get you pregnant”. He was the kind of doctor that wouldn’t push procedures on his patients simply to make money – yes, some doctors with let you do IUI after IUI even though they know it won’t work. So, when he said this was our last chance for the IUI, he meant it.

Our Last IUI

The additional drugs added a bit of cost, but it wasn’t the cost that was the worst of it. As I said, they were a bit stronger. The idea was to create more follicles in my ovaries which meant more eggs and more chance for hubby’s spermies to make it to one of those eggs. However, instead of the uneventful experience I had with the last round of drugs this one was a little different. I had something called OHSS or ovarian hyperstimulation syndrome. Basically I woke up in the middle of the night and went from a flat tummy to looking about 6 months pregnant and the pressure made it hard for me to breath. Not fun, and especially not fun when your husband is on shift and you’re alone.

I called our doctor’s emergency line and they talked me through what was happening. There was a lot of fluid building up in my abdomen. The drugs had stimulated my ovaries too much and there was a cascade of events that kind of makes you “leaky”. The severity ranges and in mild cases you’re just monitored and in most severe cases they put a giant needle in your belly to suck out the fluid. Even though I had a moderate level of OHSS, I decided against the GIANT needle and just had labs and was monitored.

The good news was that, according to all of the staff we spoke with at our clinic, OHSS was something that happened when there were high levels of hCG in your system. High levels of hCG mean what? Usually that you’re pregnant! Granted, doc never said this, but I had a level of confidence that I hadn’t felt before. Maybe this giant belly, inability to breathe and massive amount of discomfort would be worth it!

So we waited and waited to have our blood drawn. When you do these treatments they don’t really want you peeing on a stick, they want the exact numbers and they don’t want you to get too excited with an inaccurate home test, even though I don’t know anyone who has gone through fertility treatments that didn’t buy the thousand pack of pregnancy strips off Amazon.

The day came. Despite all of our “positive symptoms” that my hCG was elevated, it was not, not even slightly.

A lot of thoughts crossed my mind. “Should we get a new doctor?” “Get a second opinion?” “Try the IUI again?” “What were we doing wrong?”

When Denial Turned in to Reality

Doc brought us back in to his office. This time he was not only armed with my anatomical reasons that IVF was the only answer, but now the genetic results. I was a carrier of a genetic abnormality called Fragile X syndrome. It was another thing that I knew nothing about so I just sat and listened. Basically, it meant, for me, that I was genetically predisposed to have my fertility hindered. It meant I would hit menopause very early and that even though I was only 26 my ovaries were more like those of a 40+ year old. For our future children, the fact that I was a Fragile X carrier meant that any boy baby we would have would have Fragile X syndrome which ranges in severity from Autism to full mental retardation since I would pass my X chromosome on to all males.

As we sat there trying to process this, he went over all of the evidence again. I had stage IV endometriosis – my insides looked like someone had discharged a small grenade leaving being a mess of scar tissue – I didn’t produce many follicles even with stimulation, and my ovaries looked like those of a middle age woman. He reiterated his original recommendation that the ONLY WAY WE EVEN HAD A CHANCE OF GETTING PREGNANT WAS WITH IVF and now we added an additional puzzle piece with the suggested need of genetic testing on our embryos before we could implant.

It was at that point that my bubble of positivity came completely crashing down. I was no longer in denial, I was mad. I was mad that the gynecologist that I had seen since I was 12 had never taken any steps to look in to my abnormal bleeding, pain or other symptoms. I was so mad at her for this. In my mind if she had done something about it then maybe I wouldn’t be where we are today. Maybe I would have known I was on a time restraint. Maybe I would have even had some of my eggs frozen when I was really young to save for when I was ready to get pregnant. Maybe I wouldn’t be staring at my husband right then wondering if he was ready to be with a woman who may not be able to give him a child. Maybe…

Looking back, I just needed someone to blame. It was the normal process of grief, the stage of anger, and just like with every other emotional hurdle, it too would pass. Well, it lessened. Every once in a while those feelings creep back, but I take a deep breath and just let them go. You live in the present. It is what it is and you can only change the now for your future.

“Take a deep breath and just let it go”

Suddenly that initial goal of alleviating my symptoms transformed in to a resounding “do anything to get us pregnant”! From now on doc’s word was what we lived by. Whatever he suggested, any test, drug, procedure, we did and we would do to the best of our ability. 

IVF Begins

I guess when I said I was not longer in denial that was a bit of a fib. I was no longer in denial that we NEEDED IVF, but I was still a little naïve about the process. And oh what a process it is. To be very honest, a lot of this is quite a blur. I call this the “quick” version because there are so many details that I have a hard time remembering: length of cycles, medications, number of follicles, frequency of ultrasounds, lab work, poking and prodding. Even the number of attempts gets hazy. We just lived in a continual cycle of positivity, emotional crash, 24 hours of mourning and repeat.

This portion will be my most condensed. My plan is to go through our paperwork and get actual details for those who would like them in regards to meds, cycle length, price, etc. For now I’ll just stick to the Cliff Notes version. Please, message me with any questions you may have though and I will try my very best to answer them as accurately as possible.

IVF is expensive. Very expensive. If you are lucky enough to live somewhere where it is covered or have insurance that covers a portion of it FEEL BLESSED. Like I said, I’ll get the exact details but each round of IVF started between 12 and 17 THOUSAND dollars, and this did not include our genetic testing – $6,500 per round – or the drugs – the cost varied but between $3,000-$7000.

I plan to do a financial breakdown of our journey. When you’re in the midst of the process it’s seemingly impossible not to move on to the next step, to try again. This can get you in to a rabbit hole of debt. I know it did for us. When we started our budgeting we were over 120k in debt and 90 of it came from this IVF journey. We don’t regret it one bit, but in our financial breakdown I hope to include ways to make it less taxing on couples financially.

We did a total of 3.5 rounds of IVF. Yes, 3.5. We did two pretty standard rounds and then one Hail Mary in the end that involved the beginning of a cycle, stopping a cycle, freezing some embryos and then starting the cycle again. NO IDEA what we did there. My husband and I put 100% faith and control in to our doctor’s hands at that point.

The “standard” first 2 rounds

IVF is a process that puts your body through a lot of hormonal changes very quickly in an effort to produce a bunch of eggs, shut down this process then have your body ready to be a hospitable host for some embryos. It’s a whirlwind of information, medications, and ultrasound. Oh, and you better not be afraid of needles. I was and my poor hubby, or even coworkers, had to give me my injections EVERY time.

 

The IVF process begins on day 1 of your period and I can basically break it down in to 8 steps. Here is a basic explanation of what IVF is.

1. Day 1 of your period. You get a baseline ultrasound and usually start your stimulation medications this day.
2. Stimulation. Starting on day 1 of your period you’ll begin the medications to stimulate follicle and egg growth. The medications you received depend on your diagnosis, prognosis, doctor’s choice and a variety of other variables. You can receive anywhere from a few injections for the cycle to a few injections each day. This typically lasts 7-14 days and you’ll get ultrasounds every few days to see how your follicles are doing. (Follicles are where your eggs live!)
3. And
4. Egg retrieval and sperm “cleaning”. When you’re follicles are at a certain size the doc will decide that the eggs are ready for retrieval. You’re sedated for the procedure and a long, thin needle is inserted in your ovaries through your vagina where they “suck out” the eggs. The process doesn’t take too long and normally you only have mild discomfort and bleeding after. If you’re using fresh sperm your partner will provide his sample that same day. We were lucky enough to live close to our clinic and hubby could produce his specimen at home instead of the office. The sperm is then washed and the best little soldiers are chosen.
5. Fertilization. The eggs they retrieved are joined with the spermies with hopes that they will fertilize and become an embryo.
6. Embryo growth. The eggs and sperm combine to form an embryo. These embryos split in to more and more cells by day and are graded on how healthy they look. This process usually lasts 5 days and not all of the embryos will survive.
7. Transfer of embryos – or embryo. Transfer day is usually pretty painless and is similar to an IUI. A very very slim catheter is inserted in to your uterus and with the help of ultrasound the doctor releases the embryo to hopefully attach to your uterus. You normally lie there for a bit then go home and go about your business to begin the waiting game.
8. HCG blood test. After 2 of the longest weeks of your life you get your blood drawn. Final step. Did it work?

These 8 steps are called a “Fresh Transfer” which means that your embryos were never frozen and you have them implanted within 5-6 days of your egg retrieval.

So we basically did those 8 steps twice with a bit of a twist due to the fact that I was a Fragile X carrier. They had to do additional genetic testing that was a send off (and an extra $6,500 per round). This allowed them to see if the embryo’s would be affected by Fragile X or not in addition to HUNDREDS of other genetic abnormalities. Science is crazy.

The “problem” with this was that when they tested on day 3 (which they had to do in order for us to do a Fresh Transfer), there could be false positives on genetic abnormalities. At first I thought that wouldn’t be too bad of a thing, only pick the perfect embryos and not even risk it with those false positives!

Unfortunately, you kind of have to have a few embryos for them to test so that you have some options. That wasn’t us. First round – zero viable embryos. Second round – technically zero, but the doc decided that he would try one of the embryos that tested genetically abnormal. The reason being is that if the test was wrong and the embryo stuck we would have a full and healthy pregnancy with a genetically normal baby. If the test was correct and the embryo stuck, the pregnancy would just end in a VERY EARLY miscarriage. It was a risk we were all willing to take, but not one that worked out in the end.

I miscarried about 3 weeks after implantation. That had been the closest to being pregnant I had been in my ENTIRE life. The process was not something I like to remember, but it wasn’t the emotional crash I would have expected. It was a little glimmer of hope! At least my uterus was being hospitable.

I won’t get in to the physical or emotional aspect of that second IVF round. Glimmer of hope but also a week we spent cuddled on the couch watching most of the Game of Thrones series in one big binge. I will say that going in we thought our relationship was strong, but with every step, as he stood by my side, it created this bond that is unimaginable unless you have been through it. The process can do one of two things: create an incredible bond with your spouse or break you. We were the lucky ones and I think our outlook on the situation and each other played a HUGE role in not letting this be what ended us.

“The process can do one of two things: create an incredible bond with your spouse or break you”

Remember what I said before about the 24-hour rule? Well that 24 hours lasted a little longer than ALL of our previous ones, but we eventually picked ourselves back up and regrouped!

Doc went over our options.

Even though the ideal plan was to put me on hormones to suppress everything for a few months and let my body reset, maybe quiet down some of the endometriosis, this could not be done. You know that tick tock of the clock people talk about? Well mine was about to be out of time. My ovaries were the equivalent of a middle age woman’s and didn’t have the luxury of time.

Doc had told us time and time again that we were his most challenging patients. He had even spoken about us at a conference for gosh sakes. We were making him work HARD and we had made very little in the way of progress. 

I’m not exactly sure why we stuck with doc, didn’t reach out for a second opinion, didn’t just give up on it all. Maybe it was the amount of time, effort and heart we saw him put in to us, maybe it was the fear that someone new wouldn’t understand our complexities, maybe it was just because we were too dumbfounded about what was goi,   

Doc came up with a plan. He literally called his Hail Mary.

The details are blurry, but basically he was going to stimulate me, retrieve my eggs, shut my body down for a while to let the endometriosis quiet down then half stimulate me again and transfer the eggs in a month or 2.  The reason for this was so they could eliminate that false positive we talked about earlier. If they test the embryos on day 5 of growth then the results are 99.9999% accurate. BUT by waiting until day 5 for testing we could no longer do the fresh transfer. The embryos had to be frozen.

This was IVF numbers 3 and 3.5.

One embryo. In the few years of this process we got one, genetically perfect, embryo. Anyone going through IVF knows that pregnancy is not guaranteed even if you have this great embryo, but it was our only shot and we had to make it work.

 I remember being detached from the whole situation when we did the transfer. I no longer got my hopes up like in previous procedures. I felt very matter of fact, like doc always was. Things were out of my control. There was NOTHING I could do so I just waited…

The One Little Embryo that Could

Nearly 3 years of treatments, multiple procedures, and 3.5 IVF cycles and that ONE LITTLE EMBRYO STUCK. We were pregnant!!!!!!!!

You would think that you would celebrate, let the world know and scream from the mountain tops, but we just silently hugged one another and cried. We stayed silent to everyone except our very immediate family until we were far clear from the first trimester. And even then still apprehensive.

Even though we were considered out of the woods for any early miscarriages, the pregnancy didn’t really sink in. I swear it wasn’t until I was about to deliver our little babes that I actually knew we had done it. We were having our baby. We could breath.

8 pages of typing our “quick” story of our IVF journey and that right there was the moment I cried.

We are way stronger than we think. We have the ability to get through things that we had never even imagined and will never understand how we accomplished the task. That’s how I feel.

Looking back I would say that I couldn’t do it, that I wasn’t strong enough, but EVERYTHING besides our success is now a complete blur. There is no emotion tied to it. There is no feeling of regret, pity or pain. The only emotion I feel is overwhelming joy and relief with the thought of the little embryo that could. 

If you’re going through your own IVF journey please do not be afraid to reach out. It’s something that only others going through it can truly understand. And whether you are in the initial stages filled with questions or 10 years in still looking for the answer, just know you’re not alone.

We are very very very lucky that our journey only took us as long as it did. There are so many couples out there that have been on their journey much longer and even those that will never see an end to theirs. No matter how strong you are, it can take a toll on you. I hope by sharing our story you know you’re not alone.

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