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KSL Article - Infertility in Utah: a unique experience

Article Originally Published on KSL on January 14, 2016 and can be found here

SALT LAKE CITY — Ashley and Jake both grew up in Utah, married young at age 23, graduated from college, began their careers and dreamed of a future with multiple children.

A year after their wedding, they began trying to conceive. Month after heartbreaking month, the pregnancy tests were negative. Pregnancy announcements from friends and family started getting harder to celebrate. Reality began to set in, and with it came the realization that they would need to seek medical help in order to grow their family.

Jake felt like less of a man due to infertility and didn't share his experience with anyone. Ashley felt like less of a woman because she had always imagined herself as a mother. She began to sink into a dark depression, feeling like she was losing sight of her lifelong dream of motherhood

Friends and family meant well, but a once exciting question now stung. When would they start a family? Four years, many invasive treatments, a failed adoption and thousands of dollars later, Ashley and Jake remain childless.

Ashley and Jake's story is not uncommon. They are among the one in eight couples that struggle with infertility.

Individuals in every corner of the world experience infertility, but a Utahn struggling with infertility is likely to experience some unique complicating factors. As with any experience, infertility is colored by a person's culture, beliefs, community values, and the like. For example, a woman suffering from infertility in Manhattan may have different experiences, levels of support or feelings about infertility than those experiencing infertility here in Utah.

Interestingly, close to 5 percent of all pregnancies in Utah result from some form of fertility treatment. The Centers for Disease Control and Prevention recently released birth statistics from a number of states, and Utah scored at the top of the list: A higher percentage of Utah residents receive fertility treatment than in the other states included in the study.

How are Utahns experiencing infertility? Which emotional aspects are related to our local culture and which are not? One local nonprofit organization wanted to know more.

Infertility by the numbers

The Utah Infertility Resource Center (UIRC), a newly established nonprofit organization dedicated to supporting those with infertility, has gathered data from local respondents by posting a survey among various infertility, parenting after infertility and adoption online support groups. UIRC compiled data from 152 respondents (97 percent of whom were women) reviewing age, income, length of time trying to conceive, infertility treatments, symptoms of grief, depression, anxiety and resources individuals relied on for support.

Of the respondents, 55 percent have children (the majority have one child) and 45 percent do not have children. Of those with children, 35 percent had children who were conceived with no medical intervention, 31 percent had children through IVF (in-vitro fertilization), 24 percent had adopted infants, 19 percent had children with the help of fertility medication, 10 percent had participated in foster care adoptions and 7 percent had children resulting from IUI (intrauterine insemination).

Almost half of those surveyed reported experiencing miscarriages, stillbirths or loss of child. The median time trying to conceive was three to four years.

Interestingly, 85 percent of respondents reported that Utah's family focused culture influenced their infertility journey. Although respondents did not report specifically how it had impacted their experience, respondents may feel increased pressure to have a family or have a large family.

The average age nationally of when a woman delivers her first child is 26. Utah's average is slightly younger, 25.1. Woman in their 30s may feel "left behind" by peers or siblings. Utah also has the highest fertility rate in the nation, that is, 2.6 children for every one mother, meaning that Utah families are the largest in the country.

Living in a state with these statistics and being the outlier undoubtedly has an emotional impact on couples who are experiencing infertility. It is also likely that couples are seeking fertility treatment earlier (in their 20s and 30s) whereas couples in larger metropolitan areas where the cultural expectations differ, are likely seeking fertility treatment later (40s).

What infertility feels like

UIRC was interested to know how respondents experienced the emotional side of infertility. A common theme was isolation. Many respondents reported that they didn't share their infertility diagnosis or treatment with anyone for the first several months. When they were diagnosed, one-third of respondents didn't know anyone who had struggled with infertility, and half of respondents waited two years or more to reach out to others who were also suffering from infertility.

Respondents reported their most common emotions as sadness followed by frustration, anger, emptiness, hopelessness, depression, fear and despair. The majority of respondents reported extreme anxiety.

We know from broader studies that women experiencing infertility have significant levels of distress, equivalent to those facing life-threatening diseases such as cancer. Consider that 75 percent of local respondents reported that infertility was the most upsetting event of their life.

Barriers to treatment

It is clear that the experience of infertility has an emotional impact on couples. UIRC was interested to explore barriers to creating a family. Researchers found some interesting trends, many of which are likely true of individuals across the country.

Respondents reported cost as the most significant barrier to accessing infertility treatment. Infertility treatment is, for the most part, not covered by insurance, and couples are often left to cover the costs on their own. Local respondents with an average annual income of $60,000 reported spending an average of $10,000 to $15,000 on fertility treatments. The cost of treatment is a serious problem and impediment for most.

Respondents reported feelings of grief and loss as the second largest barrier to infertility treatment. The emotional toll often leaves couples stifled, either unable to make a decision or emotionally overwhelmed by the options.

Reaching out for support

Many respondents were unsure where to seek support services for infertility, such as support groups or individual counseling. More than half were interested in attending a support group but weren't aware of one in their area. And, although many had considered individual therapy, cost continued to be a barrier.

Many couples found support in online fertility-focused support groups. Finding support for any emotional obstacle is useful but perhaps — and the research seems to suggest — seeking support concerning infertility could also improve pregnancy outcomes.

A study completed by Alice D. Domar, a psychologist at Beth Israel Deaconess Medical Center in Boston and director of mind-body services at Boston IVF, concluded that women who were taught stress-reduction techniques, such as mindfulness-based meditation or cognitive restructuring, had improved outcomes related to conception.

Domar said, "There's something about practicing relaxation techniques or being with other women who understand what you're going through, probably a combination of everything, that makes a difference. It isn't just about relaxing." She further explains that "in some cases her symptoms and prognosis improve" when "you treat a woman's mind as well as her body." Regardless, "almost without exception she feels better and can cope more effectively with her condition."

UIRC is using the foregoing and other data to develop programs to support those who experience infertility. These programs include support groups, sliding fee scale therapy, informational events, community awareness and advocacy. UIRC is excited to bridge the gap of services for those struggling to build their families. Utah couples like Ashley and Jake will now have greater access to education and support for the mental, emotional and social effects of infertility.

UIRC's opening night celebration on March 5, 2016, will introduce Utahns to local resources and support services for those experiencing infertility

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