National Infertility Awareness Week

This week was National Infertility Awareness week, and I think this is the perfect opportunity to share the story of my own struggles with infertility. Nearly three years ago, I was diagnosed with Premature Ovarian Failure. This essentially means that I will never have a child that is biologically my own. While I do not keep my struggles secret, I don’t really advertise them. I have spoken a little with a handful of friends and family about my condition, but since my diagnosis, I have really only grazed the surface, never allowing myself to go into great detail about what has been happening to me inside and out. I wish, now, to share my story in hopes of others gaining some understanding of what so many women face.

My story begins with a wide-eyed eighteen-year-old girl, fresh off of her first year in college and never having been in love. I met the man who would later become my husband in June of 2003. Only four days into our whirlwind summer romance, he declares to me that we will be married someday and that we will have two kids, a boy and a girl. His mother has had a long and successful career as a labor and delivery nurse, and having been a mama’s boy, it wasn’t hard to know where his love of babies came from. I, too, had always dreamed of having the perfect family. I had a plan for my life, and I was already on my way, having found a man whom I loved.

It was around this time, however, that I noticed that things had started to be irregular with my cycle. When the irregularities began, I would just skip a month from time to time. I didn’t really make anything of it. It would return and things would be normal for a while. I wasn’t really one to make a big deal about health issues. I think that stems from growing up rather poor. I had never had health insurance as a child, and in my family, we basically never went to see a doctor unless it was life threatening. This led to a general anxiety of doctors and hospitals that has not abated, even in recent years. This anxiety kept me away from getting checked out for many years as my cycle became more and more irregular. By my mid-twenties, I was only menstruating three or four times a year.

Other than my medical issues, however, I truly believed I was doing everything in my life right. I graduated with a Bachelor’s Degree after only 2 ½ years from Xavier University. I was only 20. Just a few months after graduation, I rekindled my romance with my love (we had been apart while we both finished school). He joined the United States Air Force in November of 2005 and soon after, was stationed in Idaho. We carried on a long-distance relationship for several months before he proposed. We were married in an epic backyard wedding on August 12, 2006, the stories of which are still told with incredible fondness and fervor to this day.

I was doing everything right. Graduate college. Check. Married to the man I love. Check. I wasn’t exactly the huge professional success I thought I’d be, but I was still young and extremely happy. Overnight I had been transformed into a proud 21-year-old military wife. I went wherever my husband’s career took me, and soon the military took me to Spangdahlem, Germany. We were so very fortunate, to be able to live and travel in Europe in our early and mid-twenties. This is when we first started getting the “so when are you going to start having babies?” questions. We were in no hurry, though. We were in Europe, for Pete’s sake! We had so much freedom to travel and to live this incredible life that most people only dream of. My husband has always been the kind of person who could get away with whatever he wanted, and boy, did we both! We spent our early twenties doing what we should have been doing, in my estimation…misbehaving. We got to do pretty much whatever we wanted. We hung out at our friend’s pub several nights a week, we had a number of “keg in the living room” nights. We had our friends over to party every single weekend (and many weeknights). I can’t tell you how many times we would plan a last minute road trip to Amsterdam or Eindhoven or France or Belgium. We could jump on a plane and be in Barcelona in less than 2 hours. We were living in this amazing world of our own making and that world was certainly not conducive to having children. Besides, we had plenty of time for that, right? I was getting my wild party days out of the way in my 20s so I could be a responsible, respectable grown up later on. My clever response to all of those baby questions was, “we are just responsible enough to know that we aren’t responsible enough for kids yet.” I was doing things right…right? I was soon to find out how wrong I had been.

Not much sooner after the military sent us to another beautiful duty station, Hawaii, I caught one of the most overwhelming sicknesses of all time….baby fever. I was now twenty-six and it seemed like all at once, everyone I knew was having baby after baby. I knew almost instantaneously that that’s what I wanted, too. It was time. My husband and I had settled down our misbehaving ways quite a bit, and we finally decided that we were “ready” (for the lack of a better term). At the time we made this decision, I had not menstruated in six months. When I visited the gynecologist at the base hospital, she ran some blood work (which supposedly came back normally), and she gave me a prescription to jumpstart my cycle. She told me that if my cycle began within ten days, then everything would be just fine. When it did and my cycle became normal for a few months, she said I was completely okay to start trying to have children. So we started trying…..and trying…..and trying. Having come from a long line of very fertile women, and having been given the green light by my doctor, I saw nothing standing in our way. After several months, however, I started getting discouraged. Things were irregular again, but we just kept trying. For a long stretch of this time, I had cut out pretty much anything I thought would be damaging to our efforts, even drawing smiley faces on the bottles in the medicine cabinet that were deemed okay. Again, I was doing everything right.

With no results and increasing worry, I decided not to return to the gyno who had given me the clean bill of health, but to instead see a specialist at the bigger military hospital in Hawaii. There, they knew almost immediately that something was wrong. At first, they thought that I had Polycystic Ovarian Syndrome, but they decided to run more tests. This included an internal ultrasound and vials upon vials blood to be taken. I remember becoming fascinated by the process of having my blood taken, and as I watched the vials fill, I hoped that whatever answers my blood held would be good answers. They were not.

I walked into the specialist’s office on a particularly scorching Hawaiian day with more anxiety than I ever thought it was possible to feel (and for someone with a chronic anxiety disorder, that is saying a lot). As my husband was at work, I sat alone across a petite, stone-faced army doctor, as she told me that I have a condition known as Premature Ovarian Failure. She told me that I had an extreme hormonal imbalance. Follicle Stimulating Hormones (or FSH) are responsible, in part, for the healthy production of eggs in the ovaries. FSH levels should have been between 5 and 20 in a woman my age. For my first test, my levels were at 65. The second test, just weeks later showed them at 74. If there was ever a time to use the phrase, “off the charts,” this was it. My hormones were attacking my ovaries, pretty much killing my eggs and almost all chance of me having a child of my own. I sat in the office as she told me that there is a less than 5% chance I will ever have a child that is biologically my own. I was trying not to be strong and trying not to cry. Everyone who knows me knows that I am a big crier, so getting about halfway through the conversation without shedding a tear was a huge feat. I remember the doctor offering me tissues, and I noted in my mind that they were probably strategically placed opposite from her for when she has to deliver similar news to hopeful women. I wasn’t sure what to think or what to do as she ran down the list of symptoms associated with and my options for treatment for Premature Ovarian Failure.

I walked outside the hospital and sat down on some steps. I was sitting in the shadow of this massive building which seemed even bigger and more daunting because of the new revelations. I sat for a moment wondering how I was going to tell my handsome, extraordinary, baby-loving husband that I was not able to give him the family that he envisioned for us since we were four days into our relationship. Everything has always come so easily to him. He has always been able to do pretty much anything he wants with little to no effort at all. I didn’t know how to tell him of my basic failure as a wife and a woman, but he wanted me to call with the news after my appointment. So I dialed and told him while he was at work. As someone who has impossibly high expectations of, well, everything, he was surprisingly understanding. He was incredibly supportive during that phone call and later that day. However, that was pretty much the last support I ever received from my husband about my condition.

My husband and I are not exactly polar opposites, but I consider our personalities complementary. I am a very emotional person who wears my feelings on my sleeve while he is stoic and keeps things inside. I’m the type of person who analyzes and likes to talk things over while he deals with things by ignoring them. After his initial support, he basically adopted the attitude of, “there’s nothing we can do about it, so why talk about it?” I tried to get him to open up about his feelings on our new situation with very few results. Every time I would bring it up, he was dismissive. I tried to discuss our other options. He has no interest in them. To this day, he still refuses to discuss it, along with a number of other things. He just deals with things so differently than I do. I have basically been alone through this entire thing. I’ve had to carry this entire diagnosis on my shoulders. It is an incredibly hard thing to deal with without the support of the person who should understand more than anyone else. It makes it much much worse going through it alone.

What are the medical implications of this condition? Well, my ovaries have shut down. They started to shut down when I was 18 and it got progressively worse through my 20s. The other major implication is that I am now 30 years old and I have basically already gone through menopause. I went through the whole shebang. I had hot flashes (in Hawaii where it is always between 75 and 80 degrees to begin with). I gained quite a bit of weight because of my hormone imbalance. I have to be very diligent in my hair grooming routine, as I feel like I am constantly growing a mountain man beard. My sex drive was pretty much non-existent for about 2 years (thank the good Lord that one came back). I had absolutely uncontrollable mood swings that went along with horrible depression and already present anxiety, and utter fatigue. This condition also increases my risk for other conditions such as osteoporosis, autoimmune disorders, heart disease, and some types of cancer. The doctor recommended at first that I go on hormone replacement therapy, but this would have decreased my already 5% chance of having children, and at the time, I was still holding out hope.

I very well could have had children in my early 20s, but instead I was off misbehaving and being irresponsible. My chances diminished with age. Now there are options. My uterus is healthy; therefore I am able to carry a child. Through an egg donor, I could carry a child that could be half donor and half my husband. He could have a child that is biologically his. However, this process is very expensive and only has a success rate of between 40%-70%. Obviously adoption is another option, but it is often even more expensive than donation. We don’t have tens of thousands of dollars to spend on trying to get a kid; especially knowing how expensive kids are once you actually have them. How could we ever be able to afford that?

So how does Premature Ovarian Failure affect me emotionally? First and foremost, it makes me feel inadequate and defective. I honestly believed that one of the reasons that God gave me this life was to be a mother. Why would God take that away from me? I mean, this condition is most often hereditary, yet as far as I am aware, no one in my family has had infertility problems. So I have to reconcile the fact that God’s plan for me includes a hereditary condition that was not, in fact, inherited. Does God think that I would have been such a horrible mother that he had to take this away from me? It doesn’t make sense. I once was having a discussion about gay marriage with someone close to me, and one of that person’s arguments in opposition was in favor of procreation. She basically said that gay people couldn’t procreate so they should not get married. So I looked at that person and asked, “So does that mean that since I cannot have a child, then I shouldn’t have ever been married?” That kind of shut her up. Apparently a woman’s infertility is a topic that no one wants to talk about. However, that’s how women have been treated throughout history, even being used as an excuse for men to cheat on their wives and to put them aside in favor of procreation. From Abraham to Henry VIII. It makes me think that I have not lived up to the promises that I made to my husband when we were married. Kids were part of the plan. He want’s kids. I can’t give him kids. That should have been part of our life. Now it’s not. So therefore, by definition, I will never be the wife I was supposed to be. Never. I would be lying if I said that this awful experience wasn’t extremely detrimental to my marriage. It makes me disappointed in myself. It makes me constantly wonder what I could have done differently.

It has been nearly three years since my diagnosis, and while I am in a much better state than I was three years ago, I am still healing. Imagine having to grieve for a child. Then imagine having to grieve for every single child you ever imagined having, but can never have. I grieve for the life I always thought I would have, and for a marriage that may never recover. That is what I go through. I am in a constant state of grief. Most days are good days. On those days, I don’t think about my inabilities and my shortcomings. I get to forget my grief. It was harder at first, especially since everywhere I looked, people were having babies. I seriously knew 19 girls who were pregnant or new mothers a couple years back. I still have not been to a baby shower since my diagnosis. Not that I am not happy for all of my friends and family who are mothers, because I am. It is just too much to handle. I have even developed a new kind of anxiety around newborns and they around me, like they can sense I don’t have the mother gene, and they just know they can freak the hell of me.

Another difficult thing is seeing a constant stream of photos of babies on social media. Even last night was Mom Prom around here, and I had several friends attend and post pictures. Now don’t get me wrong…Mom Prom is a great thing. It’s an opportunity for mothers to get out and have a good time while raising money for an incredible cause (doing it during National Infertility Awareness Week was less than tactful, but that’s not the point). But I will NEVER be able to go to something like Mom Prom. I will never be a mom. I will never get to teach my child how to read or help them with their schoolwork. I will never get to cheer for my son at a baseball game or help my daughter pick out her prom dress. I don't get any of those things. I LOVE my friends and family who are mothers. I love my own mother. She is kind of awesome. I love my sister and believe that my sister’s absolute calling is take care of my wonderful nephews and my niece. Being a mother is the hardest job in the world. I admire and respect each and every mother out there. It’s great that my friends and family get to share photos of their kids with the world. It’s great that they get to go to Mom Prom, but I don’t. It makes me feel a deep and sad jealousy. It also doesn’t help that most married couples with kids only ever hang out with other married couples with kids. I hang out alone...because my husband is in Korea…and I don’t have kids. It’s like an exclusive club to which I will never have a membership.

There are weeks like this week that have inspired me to speak up. I didn’t even know that this week was National Infertility Awareness Week, but I do feel akin to women who share similar struggles as I have, and believe that this is the time to speak up and share my story. I don’t consider myself a strong advocate, but nor am I looking for any kind of pity. I just thought that maybe if I share my experience, that it might help someone else who might be secretly struggling as I have. I leave you with a couple pieces of advice. First, do not ignore your reproductive health, no matter how scared of doctors you might be. Second, if you happen to struggle with any medical condition over which you have no control, try not to blame yourself, and try not to let it make you sad and bitter. I was sad for a long time and it only makes things worse. Finally, don’t just do what you are “supposed to do.” I thought I was doing what I was supposed to do by waiting to have kids, and look where it got me…sitting around alone (with a cat) on a Saturday afternoon while my friends are all having lovely days with their families. Just live life. Take advantage of every single day and every single opportunity, because it’s very possible that the best opportunities in life will pass you by without you even realizing it.