The Thin Line Between Fertility and Infertility: What I Wish I Knew
Fertility is not the opposite of infertility.
What is the meaning of fertility? Many of us know that “infertility” is defined as the inability to become or stay pregnant. “Fertility,” therefore, should be the ability to have a baby at any time. Sadly, this is false.
The average woman is fertile only a few days of each month and infertile the rest of the time.
Each person experiences fertility and infertility as two dynamic and evolving reproductive states over different periods of time. And most astonishingly, 1 in 8 couples experience a fertility challenge at some point in their reproductive lives.
We are operating under the mistaken assumption that we are all fertile by default. Indeed, 75% of us never discuss our fertility with our primary care physicians or gynecologists. We assume it’s fine and instead focus on all the methods to prevent pregnancy. Preventing infertility isn’t something we or our physicians think about unless we are over 35 years old — once our fertility has already begun to decline! This doesn’t make sense to me given that almost 60% of all the in vitro fertilization cycles performed annually in the U.S. are done in women younger than 37. This suggests that the inability to have a baby is a medical condition and not a result of a lifestyle choice. Likewise, early adulthood is often the time when women are diagnosed with endometriosis, polycystic ovary syndrome, and pelvic inflammatory disease — the three main medical conditions often associated with infertility.
My (in)fertility journey.
My own fertility story started when I was in my late 20s. I felt something was wrong when I started having mid-cycle bleeding and long, painful, and heavy menstrual periods. Given my young age and low body weight, my doctor recommended a “wait and see” approach. I thought, “I know my body the best.” At my insistence, I had an ultrasound that revealed a uterine fibroid the size of an apple. Soon after, surgery removed the fibroid but my recovery was slow. Moreover, the surgery also revealed endometriosis on my left ovary. My surgeon then informed me that any future pregnancy would have to be delivered via C-section, owing to the possibility of uterine rupture should I attempt to have a vaginal delivery. He also advised that I become pregnant sooner rather than later. Even though I was married at the time, this was easier said than done.
My career was starting to build momentum but my marriage was disintegrating, soon ending with a divorce. I had just moved to New York City for a prestigious position as the North American Editor of The Lancet — one of the top medical journals in the world. This new role validated the previous 10 years that I devoted working as a cancer scientist. It also gave me access to top experts and global leaders in biomedical research, patient care, health policy, and health philanthropy.
My life was soon to change for four different but related reasons. First, my father’s prostate cancer came back. I insisted he live with me in New York until he lost the battle two years later. It was a very difficult time for me emotionally and physically. I realized then that having a family — the one I had not yet created — was what mattered the most to me. Then I needed to have a second surgery to remove yet another uterine fibroid. On top of that, I was diagnosed with autoimmune Hashimoto’s thyroiditis, of which infertility is a well-known symptom. The final event is that I fell in love with a man who convinced me to follow him to San Francisco.
For the first time in my life, I had the desire to create a family and finally had the right partner to make it happen.
All the pieces were falling into place. But once in California, I quickly realized that at age 43, I was not young — reproductively speaking. I thought I was medically literate, but I was astonished to learn that assisted reproductive technology cannot overcome biology the way I had wished and hoped. My reproductive endocrinologist, a leader in the field, told me that due to my age, my chance of having a baby at each cycle of in vitro fertilization treatment was only 5%. And then, I got another shock — each cycle of in vitro fertilization would cost roughly $15,000! Even with the high cost and low chance of success, I endured four in vitro fertilization cycles over a two-year span before giving up my hope of having a biological child.
It was a unique time in my life. I felt powerless, anxious, sad, uncertain, and hopeful — all at the same time. Even with the support of a loving partner and the best medical care, I still felt I could and should be doing more to increase and maximize my chances of having a baby. I tried acupuncture, fertility massages, gluten-free diet, and over-the-counter antioxidants. I also tried to get a second opinion, wrongly assuming that it would be relatively easy given that the Bay Area has several fertility clinics. But I slowly came to suspect why my appointments kept getting postponed and then canceled. My age and prior IVF failures meant I had a low chance of success. I would skew the clinic’s success rate statistics in the wrong direction.
I was being denied medical care so the fertility clinics could keep their success rates in a more marketable range. This was unfair and unethical and it made me furious.
To make matters worse, at the same time, I made the distressing discovery that I am a pre-mutation genetic carrier for fragile X syndrome. Among other problems, this syndrome induces premature ovarian failure and can result in having a child with autism and/or mental disabilities. Why, I wondered, was I just finding this out at age 43? The test for this condition is easily done. Of course, had I known this genetic information about myself earlier in my life, I would have had the opportunity to act when my chances of having a baby with natural conception and/or in vitro fertilization were higher. I can’t turn back the clock but I can help others avoid these small but devastating oversights.
Most of us, women and men, don’t know how easy it is to check our current fertility status. Most of us do not check our fertility on a regular basis. Instead, we check our infertility status when already experiencing a fertility issue — a time that is often too late to reduce costly out-of-pocket fertility treatment expenses.
If we have access to our fertility status early in life, many of us would be able to pursue interventions earlier, when they have the best chance of success and the lowest emotional, physical, and financial costs.
The very best fertility experts, reproductive endocrinologists, practice evidence-based medicine and are trained to help us discover, manage, and treat fertility issues and disorders. But they are largely unreachable. Most people don’t live near a fertility clinic or they have to wait months (even years) to be seen. In fact, only 40 reproductive endocrinologists graduate from Reproductive Endocrinology and Infertility fellowship training programs each year in the U.S. — in a country of over 300 million people where 1 in 8 couples experience a fertility challenge.
From pain and struggle, comes inspiration.
I want to use my personal fertility journey, scientific background, and my extensive network of top medical specialists to help others bring a baby into their lives, when and how they want. My vision is to create a collaborative, affordable, and uncomplicated go-to online fertility advice service — providing initial and second opinions for fertility guidance and treatment optimization. It would offer:
- Convenient access: Anyone interested in having a baby (now or later in life) will be able to connect with top U.S. fertility experts from the comfort and privacy of their home.
- No waiting: Timing is a critical factor in fertility treatment success. Initial consultations will be available within 72 hours.
- Independent view: Each fertility clinic follows their own particular practice patterns and treatment strategies. Having an independent expert view individual’s medical records can provide ideas for new approaches to treatment and overcome prior obstacles.
- Serving all fertility needs: Whether struggling to conceive naturally, facing a recent cancer diagnosis and needing egg freezing, or wanting a thorough case review before another round of in vitro fertilization cycle, all will be addressed.
- Multi-disciplinary approach: Fertility care requires a multi-dimensional medical, surgical, genetic, and emotional treatment approach. Reproductive endocrinologists, reproductive urologists, fertility genetic counselors, embryologists, fertility emotional counselors, and more will be available.
I truly believe that with a strong support system and better guidance, I would have been able to dramatically increase my chances of having a baby. This is why now, I want to provide this service to as many women, men, and couples as I can. I want Opionato to be the calm and caring voice and expedient expert that I wished I had. The more we learn about one another’s journeys, the more we can create a community of expert care, kindness, and support. And babies!
Maja Zecevic, Ph.D., MPH
Founder & CEO, Opionato