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Advocacy, Community, and Support: Kaylee's Journey with Infertility

11.18.2020 / Isabella Brown
Advocacy, Community, and Support: Kaylee's Journey with Infertility

Kaylee has been trying to conceive since October of 2017, but it wasn’t until March of 2020 that she was diagnosed with PCOS. Throughout those three years, Kaylee had suspected she had PCOS, but her doctor’s didn’t agree. “It took me three years to get a real diagnosis. I knew I had [PCOS] at one point, but my RE’s refused to test me for it because I didn’t physically look like I had it,” she said.

 Kaylee had felt pretty in touch with her body when she began trying to get pregnant, because she had used cycle tracking as birth control. She monitored her basal body temperature and tracked her ovulation when she was trying to avoid pregnancy. When she was ready to start trying to conceive, she felt confident that the information she’d gathered would help her get pregnant quickly. “I was pretty educated on knowing when my fertile window was, so I thought I would be able to get pregnant easily,” she said. Unfortunately, she soon found that this wasn’t the case. She used  period tracking apps, and basal body temperature, and LH strips to track ovulation, but she still didn’t have clear information about her cycle. Even when she had the data, she wasn’t sure what it truly meant, or what she was supposed to do next. “I was constantly checking my cycles and obsessing over whether or not I got it right. I’m a data analyst, so it was ironic that I would question my own analytical skills. It was stressful,” she said. “At that point in my life, when I was doing tons of ovulation tests, I was in a super anxious place. I thought that I must constantly be missing my fertile window, because nothing could confirm it.” The experience was hard on Kaylee, who felt like she wasn’t getting the answers she needed from the tools she was using. 

After Kaylee realized she wasn’t getting pregnant naturally, she decided to seek out fertility treatments. During her three years of trying to conceive, she did two IUI’s: one with clomid, the other with letrozole. Both of these failed. “I didn’t have any answers at that point. I hadn’t had my PCOS diagnosis at that point, even though I had 48 resting follicles- which is PCOS 101,” Kaylee said. She decided to move forward with IVF in June of 2020. She had her first transfer in September of 2020, which failed. She’s now going into an ERA cycle and receptiva cycle, in which they do an endometrial receptivity analysis to see how receptive her lining is to an embryo. This test will also reveal if she has proteins indicative of endometriosis. While it’s been a difficult three years of navigating her fertility, Kaylee still seeks more information about her body, as well as support from the fertility community, to help her get closer to reaching her goals. 

When Kaylee reflects on the education and available information surrounding women’s health, what stands out is the lack of awareness. “I didn’t know anything about how the female body worked until I started struggling to get pregnant,” Kaylee said. It’s been like this for as long as she can remember. She shared that when she first got her period, she didn’t know what it was, and called 9-11. She had thought she had internal bleeding. Kaylee was expecting a dot of blood- she thought that’s why it was called a ‘period.’ When she told her mom about this, her mom said, “no, that’s just what it’s like to be a woman.” This lack of information transfers into healthcare, and makes it hard for women to know how to properly advocate for themselves. When Kaylee first started fertility treatments, she, like many women, didn’t really know what to ask her doctor. “In the beginning I was completely at the mercy of everything the doctors said. I really put them on a pedestal. I thought, ‘you know my body best. Just tell me what to do and I’ll do it. It kind of felt like being a victim to the doctor,” she said. 

When it comes to reproductive health, many women feel like they’ve been kept in the dark. For a while, Kaylee felt like she didn’t have enough knowledge about her body to make informed decisions. “Constantly, everyone knows more about your body than you do. From the beginning, it’s like this,” she said. Kaylee feels that, on a widespread scale, women don’t know enough about their bodies. She reflects on a time when she was put on antibiotics that counteracted her birth control, but she didn’t know. She ended up getting pregnant that cycle, and miscarrying. Kaylee was shocked that no one had told her that the antibiotics would affect her birth control. Now, Kaylee is passionate about helping women learn more about their bodies through better health education. She believes this information is needed for women to ask questions to their doctors, and make decisions about their body.

Kaylee found the fertility community on Instagram by beginning to follow one woman who was sharing her story. “I needed people to connect with,” she said. She wanted to find other women going through similar things. “I thought, there’s no way I’m the only one going through this,” Kaylee said- and she was right. On Instagram she found a community that she hadn’t expected. After following one woman’s story for a couple of months, Kaylee decided to start sharing her own. The response was overwhelmingly positive. “It felt like going to group therapy,” Kaylee said. It was an amazing feeling to be able to post something, and have people understand what she was going through. They would offer advice, and unconditional support. “It’s changed my view of the world,” Kaylee said, “It has shown me that there are people out there who really want the best for you. You’re enough in that community.” She believes that to raise awareness and end stigmas surrounding infertility, it needs to be okay for women to share these experiences- at least with each other, as a start. There also needs to be accessible information on what everything means- all the fertility acronyms, hormones, and tests. That way, women will be better equipped to advocate for themselves. “If you’re struggling with infertility, don’t carry that with shame. It’s not your fault,” Kaylee said. She believes that education and emotional support is necessary for all things fertility.

Kaylee has recently started a podcast, called "The Angry Infertiles", where she discusses all that women trying to conceive go through, with humor.

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