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Conversation, Education, and Advocacy

08.04.2020 / Alex Covaci
Conversation, Education, and Advocacy

Alyson is passionate about sparking conversation about infertility. She believes that once you open up the topic, you’ll be surprised about how many people have gone through similar experiences. When asked how individuals can better support those going through obstacles in their fertility, Alyson said, “The taboo of infertility needs to go away. It’s surrounded with so much shame and secrecy, and it makes you feel like a failure.” Given how common infertility is, it’s unclear to Alyson why we don’t talk about these issues, and why many women and couples are forced to feel so alone. “Infertility has opened my eyes to something so huge, in so many people’s lives, that we just don’t talk about,” she said. Her experience with infertility led Alyson to becoming the advocate she is today. 

When Alyson went through genetic testing in February of 2019, the results were not what she had expected or hoped for. “I’m Jewish, and in my community it’s typical for people to do genetic testing before they even get engaged,” Alyson said, yet she and her husband waited until they had been married for about two years. When the results came back, she learned she had three X-linked deletion disorders and factor 11. “What worried the genetic counselor was both the quantity of these, and what the placement of these could be on my X-chromosomes. Also, what that might mean for my fertility,” Alyson said. After more detailed testing, they found that she had a big chunk of one of her X-chromosomes missing. This would make it very dangerous to try to get pregnant naturally, especially if she became pregnant with a boy.

Alyson and her husband were urged to go to a fertility clinic, where they were told IVF was the only way they could have a baby. In her baseline testing, doctors found that Alyson had very low AMH, very high FSH, and poor egg quality. Alyson’s doctors speculated that these could all be related to her genetic conditions. They moved forward with IVF, and in her first cycle, 4 eggs were retrieved, one matured and fertilized, but didn’t grow past day three. “This was really disappointing and heartbreaking,” Alyson said, “But we kept trying cycles, and they kept getting canceled or failing, because of my poor egg quality”. 

After four IVF cycles and three IUI’s, Alyson and her husband decided it was time to try something new. “We came to the conclusion that what we want is a baby, we want to be parents, and we couldn’t keep trying to force my body to do something that it didn’t want to do,” Alyson explained. They decided to move on to egg donation. While in quarantine due to COVID-19, they found their donor, did research, and set up the process with their clinic. 

While choosing an egg donor, Alyson said the most important factor was the health of the donor and her family. Other than that, she relied on her intuition to guide her in deciding who to match with. “I kept being told by people who went through this, ‘you just have a feeling’. You just have a feeling when you match with a donor,” she said. Alyson and her husband finally found the right match, and decided to move forward with the egg donation process. It’s nerve wracking amidst the COVID-19 crisis, because if the donor tests positive for the virus at any time, the cycle could be canceled. Although there are risks involved, Alyson and her husband felt excited and hopeful about this new phase of their journey. 

 

Alyson was met with a surprising disappointment when her donor’s cycle was cancelled due to poor response. It was devastating- the donor has had retrievals in the past yielding close to 25 eggs, but on day 9 of her cycle with Alyson, she only had 8 follicles. The doctors advised “postponing” the cycle, and urged Alyson to stick with the same donor. They claim that the donor had a bad month, that this cycle was a fluke, and that they should try again. “This was incredibly traumatic for us, especially me,” said Alyson, “because it was my poor response to all our cycles that led us to egg donation in the first place.” Alyson had felt that an egg donor was more of a “sure thing” for success, but unfortunately, she learned that this was not the case. “Nothing in the infertility journey is ever guaranteed. My husband and I are still wary of using this donor after what happened, because there's just no way to know that she'll have a better response to the next cycle. The doctors are confident, and that helps, but it really is just another leap of faith that we have to take when we thought we couldn't leap any farther.” Their donor will be starting a new cycle, and Alyson is hoping that the last cycle really was a fluke, that they’ll finally have healthy embryos, and be closer than ever to having their baby.

"Infertility has opened my eyes to something so huge, in so many people's lives, that we just don't talk about." - Alyson

 After these experiences, Alyson believes that hormone and fertility testing should be encouraged and normalized. If women had more insights on what was going on with their health and fertility, they would be more empowered to take action in reaching their goals. “If I had known all of this stuff,” Alyson said, referring to her genetic conditions, “our ending could have been different. If I had this information ahead of time, I think it could’ve made a really big difference.” Alyson believes that women should seek out information about their fertility, and be advocates for their own health. Throughout her fertility journey, Alyson has done a lot of research. This has helped her feel more confident and in control of the process. She uses the example of when she had to ask for an ERA- if she hadn’t done this research, she wouldn’t have known to ask for this. Alyson believes people should be more communicative with their clinics, and reach out for the information they want or need. 

In addition to clinical support and normalized fertility testing, Alyson encourages those facing infertility to find a community of women who understand what they’re going through. Alyson has found a group of women through her clinic who she feels very close to, who help her stay strong and remind her that she’s not alone. Alyson thinks that women should ask themselves, “what do I need? Do I need a community, or do I just need space to be by myself?” If you feel that you need a community, there are so many women and couples facing infertility looking to support others. Alyson advocates for more awareness and less stigma surrounding infertility, so that the women and couples going through it can understand that they’re not broken, and they’re not alone.



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