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Infertility Does Not Discriminate, but Women of Color Are Still at a Disadvantage

As National Infertility Awareness Week comes to a close, it’s glaringly obvious that as Latinas, this is something many of us have never thought about, let alone actually talked to anyone about. Infertility is a topic that feels like treading unchartered waters for many women, not just for Latinas and women of color of course, but in our communities, it’s something that’s is largely not discussed. That may be because anything having to do with sex and marriage is still somewhat taboo, particularly for older generations of women, or due to religious stigmas regarding fertility treatments within the Christian and Catholic religions.

But as empowered, educated women living in the 21st century, it’s time we shed the stigma and shame surrounding infertility, and take ownership of our own fertility, whether we are single or already itching to start a family.

We talked with several women about infertility, including E! host and style expert Lilliana Vazquez who just announced her first pregnancy after battling infertility for six years, and Dr. Fahimeh Sasan who is the founding physician of Kindbody, a fertility clinic dedicated to helping women have access to affordable, high-quality fertility treatment and information, to get some perspective on exactly why infertility continues to be such a mystery for women of color and what all women should be doing to be minimizing their infertility risks and preparing for their future.

Infertility Doesn’t Discriminate

First off, there are no statistics saying that any particular racial or ethnic group is more affected by or susceptible to infertility. “There is no face of infertility,” Lilliana said. She partnered with Kindbody to spread awareness within the Latinx community, which broadly suffers from being under-served when it comes to healthcare. While infertility does not discriminate, Latinas and other women of color are still at a disadvantage because of healthcare disparities. Another factor is that it’s something that’s often considered too personal or even shameful to talk about in more traditional cultures. “There were not a lot of women of color in those waiting rooms,” Lilliana told us, recalling all the time she spent at physicians’ offices while she was trying to get pregnant.

Through her own research and experience and her relationship with Kindbody, Lilliana has also learned that many physicians simply aren’t giving referrals to fertility specialists to women of color, and she’s wondered whether her financial privilege and the fact that she lived in New York City and had access to an “incredible gynecologist,” are the only reasons she was able to learn more about her fertility and eventually get pregnant. “I do think that having a relationship with your physician outside of the standard is really important she said,” recognizing that many women do not have access to that quality of healthcare. “Financially, it’s an incredible burden,.”

The Statistics Are Not in Our Favor

Dr. Sasan clued us in on some truly staggering infertility statistics and while there isn’t a lot of specific data on Latinas and infertility available, combined with the cultural factors, they’re definitely not in our favor.  Women are born with all of the eggs they will ever have and lose a whopping one thousand of them every month, so with each year of life, our fertility decreases, even if there are no other risk factors. Dr. Sasan told us that 20 percent of women over the age of 35 actually experience premature ovarian decline.

We do know that fertility rates among Latinas have fallen by 31 percent from 2006 to 2017, compared to 5 percent for white women and 11 percent for Black women.

Additionally, Dr. Sasan says that one-third of fertility issues are related to men, so when you combine these factors, it’s the perfect storm for infertility. That’s not even counting when there are other conditions at play like Polycystic Ovarian Syndrome (PCOS), which can make getting pregnant incredibly difficult if not impossible for many women.

Hormonal Abnormalities & Other Factors

PCOS is a hormonal abnormality that often negatively impacts fertility. It and other fertility conditions such as endometriosis can be dangerous for women whether they are planning to have children or not. We talked to Roxana Damas, a 39-year-old entrepreneur and human rights activist from California, who told us that PCOS actually caused her to have three near-death experiences. She would spend months hemorrhaging and underwent multiple surgeries to try to repair her health. The experience helped her realize how crucial healthcare reform is.

“I knew my body probably couldn’t take it, but this chronic illness that is rarely discussed made me question our medical system and how much it was failing the countless women and couples who wanted to have children,” Roxana said. She later turned to alternative treatments that helped her find some semblance of hormonal balance, but even then she was ridiculed by family and friends who questioned whether she was “still Latina,” when she changed her dietary habits to improve her health. “I lost my spirit in so many ways, and I chose to isolate myself to heal. I made my peace with the situation, and I know that although I could try to get pregnant. I am good with not having children, and I want to focus on staying healthy and being here for others particularly going through this journey,” she said.

Roxana who eventually got pregnant but suffered a dangerous ectopic pregnancy has now partnered with the PCOS Association to bring more information on infertility to the Latinx community. “My hope is that my story shows young women to advocate for themselves, their health, and their bodies in whichever way they chose to live it and seek help. I would not be seating here telling you this story had I waited in the medical field in this country,” she said, noting that she believes if she had been diagnosed with PCOS as a child, she could have avoided much of the hardship it caused her. She shared that her Latino parents never would have thought to have her tested and doctors never suggested it.

Education & Information

It’s important to realize that infertility isn’t just about trying to get pregnant. Hormonal and fertility issues can cause a myriad of unpleasant symptoms and lead to a number of quite serious health conditions. “Never assume anything about fertility!” Dr. Sasan said, urging women not to be afraid to ask questions. “The sooner we find out there’s a problem, the more options there are.” She believes fertility care should be routine and preventative, just like going to the dentist or having check-ups with a primary care physician. She also asserted that the majority of OBGYNS do not spend time talking about infertility, so it’s incredibly important for us as women to bring it up and seek out the information that we need related to this topic. In fact, Dr. Sasan believes that all women of child-bearing age should be discussing fertility with their doctors whether they plan on having children or not. Ideally, women in their mid-to late-twenties she says should at least have an AMH (anti-mullerian hormone) blood test—which is actually how Lilliana discovered her infertility—performed to figure out their egg count.

Shed the Stigma

Ultimately, our voices may be the most powerful tool we have when it comes to infertility. Until we get more comfortable speaking about our reproductive health, we can’t take control of it. Culturally, as Latinas, there’s a major stigma. Lilliana actually told us that none of the older women in her Mexican and Puerto Rican family ever talked about fertility, pregnancy, miscarriage, etc. and that when she brought it up with her own mother she shamed her and was told she was being inappropriate. Even though she’s now carrying a successful pregnancy thanks to in vitro fertilization, her tias are still skeptical about the science and even the morals of the treatment.

Now her experience and platform have allowed her to start the conversation with her family and followers,  and she’s hoping that by sharing her story, she can help change how infertility and IVF are viewed in the Latinx community. “It’s a problem we see across the board,” said Dr. Sasan in hearing Lilliana’s story. “It starts culturally for girls when they get their first periods,” she said.