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What I Wish I Knew:

My Fertility Journey

By Maja Zecevic, PhD, MPH

 The Thin Line Between Fertility and Infertility: What I Wish I Knew during my own fertility journey

The founder of Opionato recounts her bumpy fertility journey which culminated in the inspiration to create Opionato.

Fertility vs. Infertility

While infertility is described as the inability to become pregnant, fertility is described as the ability to conceive (in essence, at any time). But, this is not entirely correct. Fertility and infertility are in essence two dynamic and evolving body states of a healthy woman that fluctuate and interwind with each other. As a matter of fact, a healthy woman can at the same time be both — fertile (only a few days of each month) and infertile (the rest of the month).

Take this short fertility test to assess your fertility potential and to learn how to enhance your fertility. It will give you valuable information about yourself.

In 15% of women (1 in 6) the infertile state prevails for a longer time period (1). Those women experience a prolonged challenge in conceiving — if they do not conceive within 12 months (if younger than 35 years of age) or within 6 months (if older than 35 years of age). This prevailing infertile state is often caused by an existing physical barrier that impedes conception (such as a blocked fallopian tube) or is due to a yet undiagnosed and therefore not yet managed medical condition that affects egg development, egg fertilization, or the embryo implantation process.

Up to 75% of all women never discuss their fertility with their gynecologist (2). Women operate under the mistaken assumption that they are "fertile" by default and shockingly focus so many years in preventing a conception through the use of contraceptives even thought they have never assessed or even discussed their own fertility potential with their physician. Women also wrongly assume that "infertility" is a lifestyle choice made by those of us who delay having a baby later in late. In fact, not only that infertility is age-agnostic but it is also defined as a medical disease — one very much unappreciated and underestimated. Women as well are also unaware that early 30s is the life stage when the three health conditions most strongly linked with infertility (endometriosis, polycystic ovary syndrome, and pelvic inflammatory disease ) are diagnosed or than 60% of all in vitro fertilization cycles are done in women younger (not older) than 37 years of age.

In essence, most women should— but do not — proactively engage in understanding and/or maintaining their fertility potential. Only then, informed fertility decision making and informed fertility action taking can occur that results in prolonged fertility maintenance, fertility optimization, and/or infertility prevention.

I am one of those women who wished I informed myself more and knew myself better early on in my life so that my own path to motherhood could have proceeded under my own terms and timeframe.

My fertility journey started unexpectedly

I felt something was wrong in my late 20s when I started having mid-cycle bleeding and long, painful, and heavy menstrual periods. Given my age, my general medicine doctor recommended a “wait and see” approach. I thought, “I know my own 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 ovary. My surgeon informed me then that any of my pregnancies 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 me that I become pregnant as soon as possible.

Even though I was married at the time, becoming pregnant was easier said than done. While my career was starting to build momentum, my marriage was disintegrating, soon ending with a divorce. I had also just moved to New York City for a prestigious position as the sole North American Editor of The Lancet  —  one of the top medical journals in the world. This new role validated my previous 10 years of hard work as a cancer scientist. The new post gave me direct access to top experts and global leaders in biological science, medicine, public health, health policy, and health philanthropy.

My life was soon to further be influenced by four different reasons. First, my father’s prostate cancer returned. I insisted he lives with me in New York, which he did until he passed away. This 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. Second, at the same time, I discovered that I needed to have a second surgery to remove yet another uterine fibroid. Third, on top of that, I was diagnosed with autoimmune Hashimoto’s thyroiditis disease, of which infertility is a well-known outcome. Fourth 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 finally had the right partner to have a family. But once in California, I quickly realized that at age 42, I was not young — reproductively speaking. Even though I thought I was medically literate, I was astonished to find out that assisted reproductive technology cannot overcome age related reproductive decline. My reproductive endocrinologist, a leader in the field, informed me that due to my age only, my chance of having a baby with medical technology was less than 5%. I then received another shocking news  —  if we are to pursue fertility treatment  each cycle of in vitro fertilization (IVF) would cost roughly $15,000-20,000! Even with this astronomically high cost and 5% chance of success, I ended up enduring three insemination cycles and four in vitro fertilization cycles 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 optimize 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 easy. I could not find a way to obtain an immediate, easily accessible, and affordable independent fertility advice. Therefore, I had to schedule another in-person appointment in one of the Bay Area based fertility clinics that would take months to materialize — at the moment when urgency for me was everything. Then, I slowly came to suspect why my appointments kept getting further postponed and then canceled. My age and prior IVF failures meant I had a low chance of success. I would skew the fertility clinic’s success rate statistics in the wrong direction. I was being denied medical intervention so the fertility clinic could keep it's success rate in a more marketable range. This was not only unfair and unethical but also made me very angry.

To make matters worse, around the same time, I made another distressing discovery about myself  — that I am a pre-mutation genetic carrier for the so called fragile X syndrome. Among other issues, this syndrome induces premature ovarian failure and lower egg count at earlier age, making me reproductively speaking much older than my actual biological age. Why, I wondered, was I just finding this out about myself at age 42  — something that I was born with and for which a simple and inexpensive blood test could have detected it early on? Of course, had I known this genetic makeup about myself earlier in my life, I would have had the choice to act earlier when my chances of having a baby with natural conception and/or medical intervention were much, much higher.

I can’t turn back the clock but I can help others avoid these small but devastating oversights.

Doing too little and acting too late

Most women, like myself, do not focus proactively on their fertility but only retroactively to repair it once the shift toward infertility occurs. Likewise, most women, myself included, while seeing numerous doctors during our peak reproductive years (family physicians, internists, Ob&GYNs, endocrinologists), we do not talk at all with a fertility specialist (a reproductive endocrinologist) — until too late when the only way to conceive is by undergoing unwanted, invasive, costly, ineffective, and emotionally draining fertility medical interventions.

Fertility specialists are specialized Ob&GYNs who go on to have three additional years of training in reproductive medicine. And contrary to what most of us think, they not only treat infertility associated disorders but also are trained to help us ask, discuss, discover, and manage our own fertility. Sadly, seeing a fertility specialist is not easy due to their limited geographic locations, long wait times, and also high costs (3, 4). Thus, fertility specialists are not reachable to most women who want and need their advice. As a result, most women loose precious (reproductive) time for not being able to obtain the right information at the right time from the right expert.

Our access to fertility experts needs to be democratized, convenient, and affordable if we want to focus our attention and proactive action taking toward fertility optimization and infertility prevention.

How personal fertility struggle inspired a new fertility service

From pain and struggle, comes inspiration

I truly believe that with the right information at the right time from the right expert would have made the difference it my own fertility journey. That knowledge and empowerment about myself came too late for me.

I give others now what I wished I had — that calm and caring voice and that expedient fertility expert. I founded Opionato to be that easy, convenient and affordable way to access leading fertility experts so that anyone at anytime from the convenience of one's home can obtain instant fertility assessment and fertility expert advice making your path to pregnancy as desired and deserved as well as short and stress-free.

My advice to you is to act now — the time when you can control and have the power to take the right actions at the right time so your wishes come true when and how you want them.

The more you know about yourself, the more we can share fertility information, knowledge, empowerment, kindness, and support with and for each other. And have more babies!

PS. I had my third fibroid surgery since I wrote this piece.

About Opionato:

Opionato (www.opionato.com) is your trusted go-to fertility expert accessible at anytime from anywhere. We assess your fertility potential and provide next-step fertility advice so your path to pregnancy is short and stress-free.

References:

1) https://www.reuters.com/article/us-couples-infertility/almost-one-in-six-couples-face-infertility-study-idUSBRE90A13Y20130111

2) https://www.huffingtonpost.com/dr-richard-t-scott-jr/knowledge-is-power-when-it-comes-to-infertility_b_10121376.html

3) https://www.huffingtonpost.com/entry/25-million-us-women-lack-easy-access-to-infertility-clinics_us_58c8f342e4b022994fa33682

4) https://www.fertstert.org/article/S0015-0282(17)30213-3/abstract?code=fns-site

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