Open Arms, Aching Heart: My Story

Approximately 10% or 6.1 million women in the United States experience infertility (defined as either difficulty in getting or staying pregnant). 

Ladies, that's a lot of us. And it’s not something many people talk about openly. It's stigmatized- maybe you feel like it's your "fault." Maybe you blame your partner. Maybe you secretly hate your friends/colleagues/that high school kid who got pregnant without any troubles. You find it difficult to be in social settings. Seeing family turns from a refuge to an indeterminable barrage of questions 'so, when are you guys having kids?' I get it. I've been there. Oh, was I ever there. 

You see, I thought I was smart. Being the daughter of an OB/GYN, I was brought up with a lot of medical information- way more than my peers. In high school, I was the kid everyone asked for sex-ed advice; my parents were guest speakers at the school on the topic! After I went away to college, I promptly began the Pill, and stayed on it over ten years, thinking nothing of the consequences (they weren't really known then anyway). I met my husband in college, but we didn't get married for 8 years as we were both establishing our careers, traveling, and enjoying young adult life in the city. I never considered that I would have trouble conceiving, even though the early signs were there. 

What signs? Well, for many years I struggled with an eating disorder, which eventually caused amenorrhea (irregular or periods that completely stop). In truth, I never had regular periods, as my ED began prior to menstruation. I would bleed for 3 days, once a year. While I knew this was not healthy, I considered myself "lucky" that I didn't have to deal with the monthly cramps my girlfriends complained of and figured that as soon as I started eating properly, my periods would regulate. And although I was thin, I also dealt with constant inflammation, which could be seen in my distended "pot belly" and fed my eating disorder even more. Brain fog, cramping & constipation I all considered a way of life. I thought constant stomach pains were normal, and that everyone else obviously just dealt with them better than me; that I must be a 'whiner' or a wimp.

After we got married and decided to try to have children, I went off the pill and for over a year nothing happened. My periods went from sporadic to non-existent once I was not on the pill. Frustrated, we tried Clomid several times, however, my ovaries became so polycystic we could never complete a cycle. This was the first piece of alarming medical diagnosis I had ever received- I had Polycystic Ovarian Syndrome (PCOS). I was confused. How could I have PCOS? True, I didn't get periods like other women, but weren't PCOS women obese? I was slim. Didn't PCOS women have mustaches? I didn't have facial hair or any of the outward markers that would normally cause a physician to look for PCOS, which is how it had been missed for so long.

It was around this time that I became determined to conquer my eating disorder for good. Although I was much better than I had been in my teens, old habits were hard to break when in times of intense stress or depression. As I worked to normalize my nutrition, I noticed problems with my digestion. Food would sit in my stomach like a rock (one reason, I realized, that I had such a strong impulse to throw it up). My digestion was such an issue that at 28 years old, I had a colonoscopy and a defecography. It was painful and humiliating as well as fruitless; I was not taken seriously and was given a diagnosis of Irritable Bowel Syndrome (IBS) and sent on my way. During this time, I specifically inquired if I might have something more serious, like Crohn's or celiac disease and was told no. It was many years later that I was diagnosed with Celiac Disease and learned that I was never even checked for celiac during these procedures, even though I had the invasive procedures necessary to determine a diagnosis and had specifically asked. Surprise, surprise, a young female's complaints not being taken seriously.  

My doctors recommended In Vitro Fertilization (IVF) as a next step, given that Clomid wasn't working. This sent me into an emotional tailspin. I didn't WANT to conceive this way. What if I spent all this time and money and it didn't work? Even worse, I knew that the process of IVF, as emotionally draining as it is, would COMMIT me to this label of 'infertile.' I would be an infertile woman, and when it didn't work, I would be devastated. It was a huge emotional and financial risk, and I was terrified that my heart would never heal from it. Eventually, though, I rallied my courage for the good of my unborn children, and we began IVF at the Cleveland Clinic. Devastatingly, we never were able to fully complete a cycle. My polycystic ovaries were at it once again, ruining any chance I had of insemination. I was told that I would never conceive, that I was wasting my money and time; given a pamphlet on surrogacy & sent on my way. I cried for months. 

Laid completely bare, I hit bottom. I felt guilty that I was "depriving" my husband of the children he wanted so badly. I imagined that he wanted to divorce me. I considered leaving him for "his own good." To say it was a dark time is an understatement. Exhausted from the constant poking and prodding, I told the hubs that I needed a break. We booked a trip to Europe in the hopes of rejuvenation, and perhaps to prove to ourselves that our lives could still have meaning without children. On that trip we encountered multiple families with adopted children, and my husband implored me to stop prostrating myself and sign up for adoption. Although I began reaching out to some adoption agencies, some part of me knew that I wasn't ready to give up yet. 

Back at home, I knew that the traditional routes weren't working. I had to do something different, so I turned to ancient remedies via traditional Chinese medicine and Ayurvedic techniques- castor oil packs, acupuncture, teas, tinctures, enough vitamins to choke a horse, massage, meditation, therapy, and a complete overhaul of my diet- everything 100% organic, no plastic or canned food containers. I threw out all my makeup and skincare in favor of holistic options. It was incredibly expensive, but I felt compelled to leave no stone unturned. 

Back in the States, my mother (a reproductive endocrinology nurse) told me of a clinical trial she had just read about. The Center for Human Reproduction in NYC with Dr. Norbert Gleicher were doing to assist women with thin uterine lining (only part of my issue). I was game and made an appointment. It was expensive- $400 for a phone consultation, and approximately $25,000 in lab work, as Dr Gleicher turned over every stone. I learned that in addition to Celiac Disease, I had a genetic mutation called MTHFR that inhibited my body from absorbing folic acid (an essential nutrient for fetal brain development) as well as the Fragile X gene, something other centers weren't even aware of as a factor that influences treatment plans and prognoses. I immediately began augmenting my diet and vitamin regimen. Although Dr Gleicher had accepted me for his clinical trial, he suggested we try an innovative hormone therapy first. With all my previous IF treatments, the focus had been on increasing estrogen, which left me with brain fog, irritability, and generally feeling 'not like myself.' Given my PCOS, Dr Gleicher assessed that although my testosterone levels were higher than average, all this therapy had reduced them to lower than optimal levels for my particular body. I immediately began testosterone therapy, and within 3 months, normal periods resumed. I was pregnant within a month after that ON MY OWN with no insemination or other intervention. For my second child, we already knew the magic formula, and although this time it took 6 months, I got pregnant on my own again. After my second child, I experienced regular 30-day cycles for the first time in my life, and WITHOUT EVEN TRYING found myself pregnant with our 3rd child- who me, with a surprise baby?! We now have a healthy, thriving family of 5, of which I will never stop being endlessly grateful for. But I also realize that without the advantages I had and without the hard-won education on my personal medical history, my children would not be here. 

The science of reproductive endocrinology has come a long way, but patient advocacy (and particularly for the LGBTQ set) has a significant way to go. It is critical that you educate yourself, become your own advocate and learn all you can - do not take no for an answer. You also must take responsibility for what you can control- your diet, your body, and your overall health & wellness regime. Although Western medicine does not tend to focus on these things, we know that they play an important role in conception. Without a multi-pronged approach to health and wellness, conception would not have been possible for me. Although harrowing, I am so glad that I had this experience and now get to share this knowledge with you.