21 Months

A friend who struggles with infertility once remarked to me that people tend to only share their infertility journey after they've finally achieved a viable pregnancy or had a child. After receiving the diagnosis of infertility, I too thought it would take success for me to feel confident enough to share my story. However, I am a person who deals with pain by talking about it with people who care about me. I have already shared parts of my story with many people around me, and have decided to publish it here with the hope that it might help someone else going through a similar challenge.

In October of last year, Kevin and I qualified to participate in a study that would observe the effectiveness of two major brands of in vitro fertilization (IVF) medication. As part of the study, we would receive a free cycle of IVF treatment. We were elated. I texted many of my closest friends and family, who knew that we had been going through many tests and procedures to qualify, "I'm going to be a mom!" In my mind, I knew that one IVF cycle didn't guarantee pregnancy, let alone motherhood, but my doctor and clinic, and everything that I read, implied that my chances of success were very high, given my age and my very high egg reserve. I suppose I sort of mock my former self after all that we've been through now, but I won't give up my dream of being a mother.

The Beginning / Diagnosis

Our infertility journey started long before we qualified for the study. Kevin and I started trying to build our family in March 2015. I was nearing the end of the first year of my Master's program in statistics, preparing to take qualifying exams in a few months. We both naively expected that achieving pregnancy wouldn't be difficult; my mother had me when she was forty, I had only ever missed one period in my life, and, as far as my husband and I knew, infertility had never been a problem in either of our families. Because I was so consumed with graduate school, I wasn't distraught each time my period started. Being a budding statistician, I calculated my probability of being infertile, given how many months we had tried without success. This was well before the year mark, and so my calculation gave me the reassurance that we still needed to give it more time. There were several times when I felt nauseated, which I perversely hoped would be morning sickness, but each time it would just turn out to be premenstrual symptoms. I rarely used home pregnancy tests, just because I thought it was a waste of money if the start of my period could give me the same information.

I started using ovulation predictor kits the month I graduated with my Master's degree, thirteen months after we started trying. I got a smiley face (a positive) each month like a normal, fertile person would—because I ovulate regularly and have periods. Except nothing else (aka pregnancy) ever happened, month after month. I started listening to an amazing podcast called Beat Infertility around the same time, which helped me begin to cope with all of the emotions that had started to consume me – sadness, frustration, bitterness. Yet, I was in the denial stage of grief; I still didn't think we necessarily had "true" infertility – I thought that maybe we just hadn't tried hard enough.

Beat Infertility was an invaluable resource for understanding the causes of infertility, and what to do next. I learned that OBGYNs are not fertility specialists and that I could go straight to a specialist, a reproductive endocrinologist, to get more focused help and treatment. So, that's what we did. In mid-July, we had our very first appointment with a reproductive endocrinologist at Stanford. We sat and talked for about 20 minutes before she performed any medical procedures. She said that we were probably going to be a case of unexplained infertility and that we would likely have success with Clomid (a drug you take by mouth for a few days at the beginning of your cycle which can cause you to mature and release multiple eggs instead of just one). She remarked that we were young, but it felt like she was telling us we were overreacting and didn't belong in her office.

However, minutes later, surrounded by my husband, a fellow, and a nurse, she took a look at my uterus and ovaries with transvaginal ultrasound (TVUS) and found something she wasn't expecting. Let me begin by saying that I was somewhat terrified to receive a TVUS—it's not the typical ultrasound that's used during pregnancy (when I ask mothers without infertility if they had ever received a TVUS, they usually don't even know what I'm talking about). Prior to the TVUS, I also received my first ever Pap smear (for some reason I just kept putting it off). I remember going to the bathroom to "empty my bladder" before the procedures. I was somewhat shaking. I mustered up my courage and repeated to myself, "I've done hard things, and I can do this."

The Pap smear wasn't actually bad at all. In fact, as she began the TVUS, the doctor commented that I was quite relaxed compared to most women. That seemed to put the room in good spirits. She noted that my uterine lining was in near-perfect condition, which added to the good feeling pervading the room. Then she moved on to my ovaries and immediately said, "That's endometriosis." The room went quiet, and that happy feeling was gone.

What she was seeing were endometriomas, which are complex cysts caused by endometriosis. We saw them too – globules of darkness on the screen, obscuring portions of both ovaries. After she finished measuring each one, she and the rest of the clinicians exited the room and I changed back into my clothes.

My initial thought was that she must have made a mistake. Me? Have endometriosis?

At that point, I knew quite a bit about endometriosis from listening to every Beat Infertility episode that featured Dr. Allison Rodgers, a reproductive endocrinologist. There was an entire episode devoted to endometriosis. For those who aren't familiar with endometriosis, it's caused when endometrial tissue (the tissue that lines the uterus) grows outside of the uterus. It can cause intense pain (I guess there was a reason I went to the ER before because of menstrual pain), produce scar tissue on the reproductive organs, and can greatly reduce the quality of egg cells in the ovaries. While endometriosis can only be officially diagnosed via laparoscopy (surgery), in severe cases it can be seen on ultrasound.

I remember remarking to Kevin then and there that we would probably need to do IVF. I felt shaken. My world really was never the same after that moment. I had just been diagnosed with a disease that currently has no cure. I still struggle with that diagnosis on a regular basis – I often feel like my womanhood has been compromised, that my body has betrayed me.

The doctor returned shortly thereafter. She recommended that I have a laparoscopy to surgically remove the endometriosis, which was likely in other areas besides just my ovaries. She told me this was at least Stage III endometriosis (there are four stages, with the fourth being most severe). I already knew at that point that laparoscopy to improve fertility was controversial, and something that was more aligned with an "older" school of thought. In fact, many doctors now say that instead of undergoing surgery, women with endometriosis can have success with IVF. To make matters worse, the Stanford doctor didn't seem to care. I felt as if she were saying, "You're young. Get a laparoscopy and you'll get pregnant."

I knew that I would only see the Stanford specialist once, as we were returning to Utah at the end of the summer, so I would get a second opinion from another reproductive endocrinologist after our move. I started seeing Dr. Shawn Elizabeth Gurtcheff at the end of August, and she confirmed the endometriosis. She was so different than our previous doctor; she made me feel like my concerns were valid, and she didn't discount my diagnosis because of my age. She recommended that I not get a laparoscopy, as it can damage healthy egg tissue on the ovaries. In the end, it was my choice, and she gave me a short list of talented reproductive surgeons in the area if I was interested in going that route. However, she recommended we start with intrauterine insemination (IUI), if my tubes were not blocked.

The next day, I had a hysterosalpingogram (HSG) to check if my fallopian tubes were blocked. I was so worried about that procedure! I had read about some women experiencing intense pain during the procedure, but I resisted the temptation to Google my way to despair. The procedure actually wasn't too painful, although I did feel intense cramps for a few seconds. Kevin also got to come into the room with me to hold my hand (he had to wear a lead apron). You're opened up like a pap smear, and a catheter with dye is inserted into the cervix. The dye is then injected into the uterus and flows out of the fallopian tubes if they aren't obstructed. Pictures are taken of the process with an x-ray. Mine weren't blocked, so we were cleared for IUI, as long as the blood work all came back normal.

About two weeks later, I met with Dr. Gurtcheff to go over my blood work and next steps for treatment. Besides being diagnosed with subclinical hypothyroidism (which I was put on medication for), all hormone levels were normal. Most interestingly, my Anti-Mullerian Hormone (AMH) was 8.6 – which is unusually high. High numbers mean you have a high egg reserve. Normal levels for my age are around 4. Because I have a high egg reserve, my doctor told me that I would likely qualify for the Megaset study and receive a FREE IVF cycle. She told me that IUI was a reasonable treatment option, especially since my insurance covered unlimited cycles, but that I needed to be prepared for the very real possibility that we would need to pursue IVF in order to have a child. At this point, we were preparing ourselves for IUI, but it didn't take long to decide that we should seize this opportunity and do IVF instead (I think we decided 5 minutes after the appointment).

I've lost count of how many blood draws I've had.

First comes love, then comes marriage, then comes IVF

Many blood draws, a saline sonogram, and a physical exam later, we officially qualified for the study. I anxiously awaited my next period to start so we could begin treatment—I had never before been so eager to start bleeding. I had a baseline ultrasound and blood work on October 20th. The study doctor counted more than 24 follicles and said we would probably have around that many eggs, or even more, retrieved. We were randomized to Menopur, and I began receiving daily subcutaneous injections in my abdomen from Kevin, who would carefully prepare all of the injections beforehand by mixing the right amount of Menopur and sodium chloride. I had to receive the injections every morning at 6 am before I left for work.

Happy as a kid on Christmas morning.

The needles were usually not bad. We did the injections in the same place every morning, the bathroom, and I still recall the strong smell of the alcohol swabs that I would use to prepare the injection site. During my first injection, I remember thinking out loud, "What are we doing? Why do I need to put needles in myself in order to have a baby?" It felt unreal that Kevin was actually going to push a needle into my stomach. I played a favorite song from The Lord of the Rings soundtrack, which helped calm me down and put me in a hopeful mood. I bruised the first time, but never again after that.

Feeling very hopeful.

Many people that I talk to have heard of IVF before – maybe they have a friend or distant family member who has undergone the treatment, usually someone they aren't close to. Long before infertility, and even before I was married, I knew several couples who had their children through IVF. I never imagined that would be my story.

Yet, here we were. There was no way of escaping the reality that the chances of us having children "naturally" were around 1%. Although Kevin's initial semen analysis came back normal, as part of the study, he had a second analysis done, which showed that he actually might have a serious sperm morphology (shape) issue. Abnormal sperm morphology makes it near impossible for egg fertilization to occur on its own, which would absolutely contribute to my inability to get pregnant. In fact, the issue almost always indicates IVF is necessary in order to have children.

Hiding drugs, syringes, and needles underneath my desk at work.

I had shots each day for 11 days total, and most of the days I had more than one injection. I had to go to my clinic for a blood draw and ultrasound for six out those 11 days. On the eleventh day, there were only three follicles that were really on their way to maturation. An additional four looked like they might make it, but it wasn't certain. This was the point that I thought this treatment cycle might not actually work. It was a devastating feeling, but the nurses assured us that it was still possible, "You only need one good one." That day, Kevin administered the HCG trigger shot, which sent a strong hormonal signal to my ovaries to release the eggs in 36 hours.

On November 1st, I had my egg retrieval. I was worried since I had never been put under before, but my body responded really well to the drugs and it was quite simple. Only three eggs were retrieved. My doctor told me she was hoping for 10, but some of the follicles they thought contained eggs were actually endometriomas (my doctor later told me that after the retrieval, she was 99.9% sure that I had endometriosis, even though I have never been diagnosed laparoscopically). I was glad they at least got something.

In the recovery room after my egg retrieval surgical procedure--still drowsy from the drugs

The next day, the fertilization report indicated that all three eggs were mature, but that only one fertilized successfully with intracytoplasmic sperm injection (ICSI). The other two eggs had been injected with sperm, but had started to arrest, or die, that day. Only one embryo survived. It was then that I really started to despair. I cried a lot after hearing the news. On top of that, I was still in physical pain as I was recovering from the egg retrieval procedure, and was also dealing with the after effects of general anesthesia. I had only a small hope that the embryo would keep growing. Still, I held onto the hope of "the little embryo that could."

Two days later, on Friday the fourth, I got the phone call during work, the phone call I had been anxiously awaiting and also dreading, that the embryo had actually made it to Day 3. I honestly didn't think it would make it. It was 7 cells large. I was so relieved, that I felt absolutely exhausted for the rest of the day. The embryologist said that there was a 50/50 chance that the embryo would develop to a Day 5 blastocyst. On Sunday, I got the call from my doctor that the embryo did indeed make it to Day 5, was looking good, and that I could come in that day for an embryo transfer.

Kevin and I hugged each other after hearing the news – it felt like maybe things would work after all! It was so exciting to see everything unfold – the embryologist biopsied a few cells from the embryo for pre-genetic screening, my doctor prepared me for transfer, and the embryo was placed directly into my uterus. We saw it all unfold on ultrasound, and we saw the fluid holding the embryo being injected into my uterus. It was one of the most precious moments I have experienced—life was literally being placed inside of me, and this might actually become our child.

We were given a photo of our embryo. Kevin and I didn't want to become too attached, as there was still a significant chance it wouldn't work. Still, in my mind I thought, baby's first photo. Our doctor gave us a 60% chance of pregnancy. To put that into perspective, a couple without infertility has about a 20-25% chance of pregnancy each cycle.

Just minutes before the embryo transfer--feeling ecstatic!

We were scheduled to come in for a blood draw 10 days later to see if it took. Long story short, by the time day-10 came, I was already experiencing heavy bleeding. I had experienced what I later learned was a pre-implantation miscarriage. It was an emotionally traumatic time; perhaps I'll talk about it at a future date. Although I don't think I could ever lose hope entirely, since then I feel like I have permanently less hope in the universe. I am more cynical than I once was.

Dreams Deferred

Anyway, here we are now, over two months later. We met with our doctor recently to go over why my IVF cycle was a disaster (only three eggs retrieved), and what's next for us. It was an exciting, hopeful appointment. She does not think our chances of success are any less than they were before. We started an entirely different protocol a few weeks ago and will be finishing the second week of February, and will hopefully have a much better outcome.

For many weeks, I've considered sharing this intensely personal, vulnerable side of me. I felt that perhaps I could help someone else going through a similar experience. Infertility is such a lonely, painful journey, one that cannot truly be understood unless experienced personally. The pain is increased by the fact that many people don't realize that infertility is a medical condition—some people dismiss infertility as being due to not trying hard enough, not eating the right foods (like, what the heck? I have literally been preparing my body for pregnancy for the past five years!), not being "relaxed" enough, or some other falsehood. In addition to the medical implications of the disease, infertility is a reproductive trauma. A study actually found that women with infertility felt similar levels of anxiety or depression as those diagnosed with cancer, hyptertension, or recovering from a heart attack. I don't anticipate that many people will read this unless they know me personally. If you are reading this, are experiencing infertility, and need a friend, please consider contacting me.

The feeling of IVF failing was truly horrible. I would constantly think, "But I'm young. I have a lot of eggs. This was supposed to work for me!" The reality is that it didn't work, and there is nothing that can change that. The grieving process is difficult, but so important. I took a few days to really grieve—I would cry often. I took a few days off work (work proved to be incredibly complicated when dealing with IVF, unfortunately). I talked about it with close family and friends. I received beautiful gifts and encouragement from some of the dearest people in my life. I reached out to my online support group and asked for encouragement from other women who had also had a failed IVF cycle. A week later, I was starting to heal. Although I felt defeated after IVF failed, I feel stronger now. I can now say that I survived, emotionally survived, a failed IVF cycle. Still, I experience sadness on a regular basis over the whole ordeal.

I know that many couples have been through so much more, but this is my story. 21 months after trying to expand our family, we are still childless, and I am not pregnant. Yet, we have both developed as individuals and our marriage has been strengthened through this challenging period. Although infertility is one of the most difficult trials I have had to face, I can see these experiences shaping me as a person, and expanding my heart to better empathize with people around me dealing with sadness and grief.

I don't know how far this blog will go, but I have compiled a list of topics that I want to discuss in future posts. These include:

  • Being an Infertile Woman in the LDS Church

  • Pre-Implantation Miscarriage

  • Endometriosis – From a Researcher's Perspective

  • How to Talk to Me (and Others Like Me) About Infertility

  • The Prevalence of Infertility - A Historical Analysis

I visited a therapist during my brief time at Stanford this summer, shortly after I received my endometriosis diagnosis. Although it was only one visit, she gave me invaluable advice. She told me that I had an important story to tell.

At that moment, I had never imagined that I would ever share my story this publicly. However, after everything I've gone through, I feel permanently changed as a person. When someone asks me how I am doing, my infertility journey undoubtedly comes to mind, but I rarely respond with how I truly feel.

I thought it would take success for me to feel confident enough to share my story, but I cannot keep suffering in silence.