NIAW Feature: Finding a Voice

Jane Jolis captured by photographer, Alexis Mera. Shirt design by Kayla Kleinman.

Although National Infertility Awareness Week (NIAW) has completed this year, I thought it was important to close out the week with Jane Jolis’ powerful story of advocacy. It’s a message that we should carry with us all year long. Jane reminds us that nothing is promised, including a baby, and that when we listen to inner voice and advocate for ourselves, we are set up for success to arrive, and confront the root of the issues that may be standing in our paths to parenthood.

However nebulous and out of our control this journey is, using our voices to advocate for ourselves is paramount. Jane and I discussed that If something doesn’t feel right, it probably isn’t. There is something to be said about following our gut after all…

Jane’s story

I’ve always wanted to be a mother, ever since I was a little girl. I was the three-year old stuffing my shirt with pillows to “play pregnant”. So it came as a particularly painful shock when, after six months of trying, my husband and I learned that we should try IVF. I have diminished ovarian reserve, and my husband, low morphology/motility. We skipped over IUI and went straight to IVF.

Despite our challenges we had success in creating healthy embryos right from the start. However after transferring a total of four in the span of one year and having no success, we realized that something was wrong. I had to push hard and advocate for myself in order to have the laparoscopy which is ultimately the reason I am now a mother.

In December of 2017 I had the surgery to uncover suspected endometriosis, and not only did they find endometriosis but they also found that both of my (Fallopian) tubes were damaged and had hydrosalpinges. Hydrosalpinges meant that fluid was leaking into my uterus and could be toxic to the embryos. Damaged tubes also accounted for why I’d never been able to get pregnant naturally.

My Fallopian tubes were removed and after a canceled cycle, heartbreaking in its own right, I did my fourth IVF cycle and a fresh three-day embryo transfer, ultimately resulting in the birth of my son, now four months old. Although my situation turns out to be somewhat rare given that nothing ever came up on any scans indicating that my Fallopian tubes might be damaged, it speaks to the fact that if I hadn’t advocated for myself, I am not sure how long it would have taken, or if we would have been able to tackle the problem directly.

Your High?

My true high was the birth of my son, and still is. Also just seeing that first positive pregnancy test with a strong line was incredible. However I’d say another high, as crazy as it sounds, was learning that my tubes were severely damaged, and that they’d likely been impeding my success all along. As sick as that sounds, when you’re deep in the darkness that is unexplained infertility and IVF, any answers are positive because it may mean a solution to fix it.

Your low?

There were honestly so, so many. Every failed transfer was a huge low. The lowest was probably after my second transfer when I was in fact pregnant but lost the pregnancy after only a week or two, (a chemical pregnancy). I’d been watching the HCG rise, but not enough… and I spent the worst weekend of my life obsessing over (pregnancy) pee sticks and texting pictures to my doctor. At one point I found myself on the bathroom floor at 3 am surrounded by sticks. My husband had to physically come and remove me from them and from the bathroom. I was a wreck. Watching the HCG rise but not ultimately rise enough was one of the slowest tortures that I could ever have imagined. I truly felt broken after that, and had no idea how I was going get past that (moment).

Do you have a silver lining?

This experience has led me to build a fertility coaching/advocacy consultancy as I feel called to work with women and families struggling with (in)fertility. There is such a need to support those in the deepest thick of this who are trying to navigate the darkness with no end in sight. I can relate to that feeling of sheer panic and fear because I have been there. I’ve realized that this is the work I’m meant to do, and I’m working to build this business. 

Do you have any words of wisdom?

Stop trying to pressure yourself to “stay positive.” This was the hardest part for me; trying to maintain hope and optimism when all I felt was panic and dread. Sometimes you just need to feel your feelings and lie in the darkness and cry. And that’s okay. You will eventually make it to the other side, but that “other side” may not look the way you’d originally thought it would, and that’s okay too. Letting go of maintaining a falsely positive outlook was integral to my survival (during the journey).

There were many times that I thought I would never be a mom, but had I felt that my doubts were further holding me back from getting pregnant, it would have made me even crazier. The truth is, feeling good and relaxed is ideal, since stress (during IVF) is real. If you don’t always feel positive, don’t beat yourself up over not feeling that way. Whether or not your attitude is 100% positive all of the time is not going to be what does, or does not get you your baby.

Jane lives in Brooklyn with her husband and four month old son. As a direct result of Jane’s experience, she is currently building an (in)fertility advocacy and coaching practice. Please stay tuned for details or reach out if you would like to be connected with Jane.

NIAW Feature: Finding Community

Rebekah Rosler, photographed by Alexis Mera. Shirt Design by Ko Im.

Rebekah Rosler is a professional licensed master social worker (LMSW) and therapist, who has always had a passion to lift others. That passion became a mission after Rebekah’s own fertility experience. Rebekah has used her strength and voice to create (the Warriors) community for other women on their (in)fertility journeys by creating a safe, online community of support and empowerment.

Read on to learn more!

Rebekah’s story

Interestingly enough, I never thought that I wanted children. I spent my life making sure that I could not and would not get pregnant… Only to find out that when I met my husband and my life changed, I wanted children. I also discovered that I wouldn’t be able to (without assistance). In retrospect, it makes sense to me because there had been fertility challenges for both my mother and grandmother. I didn’t think that children would be on my life path so I hadn’t really thought about it much before (that point).

I met my husband at 33, we got married at 35, then tried to get pregnant for a few months. When we didn’t have success, we wanted to proactively find out if everything was alright. Per the recommendation of my doctor, I got a HSG (hysterosalpingogram), and found out that one of my Fallopian tubes was blocked. That meant that every other month my chances of a pregnancy were at zero. As a result, we decided to seek (medical) help right away.

I had heard about good outcomes from New Hope so decided to go there. The reality is that although I got the desired results I was looking for, I saw my doctor once in the three years that I was there. All communications were through the nurses and through email correspondence. Initially, my protocol was as follows, month one: timed intercourse, month two: medicated intercourse, and month three: IUI. When that didn’t result in a pregnancy, we took the doctor’s counsel of doing Mini IVF. (The focus of Mini-IVF is quality over quantity.)

In my first round of Mini-IVFI got six eggs, five made it to the blastocyst stage. I transferred two freshly at day three, and froze three. One of those two embryos transferred stuck and became my now three year old daughter. A year later, I transferred two embryos that were day 5 and 6, getting pregnant with twins.

I realized that my experience gave me the ability to start create a community and start a group (called Warriors) to support others on their journeys. Having run Warriors (closed Facebook group) for over three years and seeing the years of struggle, sadness, heartache, and financial distress, I am aware that every (in)fertility journey is unique. I was lucky to have conceived quickly after treatment with the outcome of having healthy babies. Although my journey wasn’t filled with heartache, I had to go through it myself to understand the importance of talking about (in)fertility, and how to support others going through it.

What did you learn from your journey?

I never wanted kids, decided I wanted kids, took action immediately and got lucky. I never had the true struggles that so many people go through with (in)fertility. What I had was a life changing experience that allowed me to support and help other women (during pre-conception). It introduced me to a different version to help and support women during their experiences which were more often overwhelming, challenging, disheartening and at times tragic. It also allowed me to create a career to continues that platform of support through Mom MeetUps.

After starting Warriors, I started Mom MeetUps to help women on their journey of motherhood. My fertility experience was my initial earth shattering, aha moment that showed me that what I was called to do, was to help people through their fertility journeys. That lent itself to supporting the motherhood journey later on.

Your high?

I feel so lucky that I got pregnant and have a three year old daughter, that I am mildly obsessed with. My next high after a terrible pregnancy, was carrying two incredible babies to term and having a healthy labor. After all three of them were born, my third high was leaving my paying career to create a company to help other women along their journey. Through the means that I had, I was able to offer support groups to the Warriors group, and also create tailored Mom meet-ups to those who had fertility challenges prior to conceiving and then had a baby, twins, or multiples. We have since created meet-ups for single, first-time, second-time, stay at home, and working moms, as well.

My educational background is in social work and I always knew that I wanted to be a therapist or help in some way. My own fertility journey brought me to this; health and women on the path towards creating their family. I had always been on the “this is what I am supposed to do” track; from high school, college, to graduate school, without intention or true personal passion. I put one foot in front of the other until this happened to me. This gave me the ability to do something for others and hold their hand through their journey. Being able to add any light to this dark place has been incredibly rewarding.

Do you have a silver lining?

Perhaps the silver lining was the group created for women who are hoping to be, or are already moms, to have a safe space to share personal experiences. I have heard that the Warriors community has been helpful because even women who are desperately trying to become moms are still able to support each other when they are going through some of the most trying times in their own lives. Warriors (group) has proven to be a place that people come for kindness, to share, seek resources and support. There is something that needed to exist in this (fertility) space that didn’t before.

Your truth?

Even when our stories go exactly the way that we envisioned or hoped, having a group of other women that are there to support, empower and show kindness, has made all of the difference. I have learned that it is not only about us, it’s just as much about participating in a greater community.

Rebekah is a 30-something infertility warrior, mom to three babies (a 3-year-old and a set of twins), Licensed Master Social Worker, doula, and co-Founder of Mom MeetUps. Rebekah leverages her blog bexhasbabies.com, social channels and Warriors group to share her experiences and help normalize the message of infertility, breastfeeding and postpartum challenge.

If you are looking for a community to support your or a friend’s (in)fertility journey, please reach out to hi@fertilust.com to be connected with Rebekah’s safe Facebook group called Warriors.

NIAW Feature: Options are Valuable

Anthea King-Pascual captured by Alexis Mera. Shirt designed by Kayla Kleinman.

I had the opportunity to sit down with fertility warrior, Anthea King-Pascual to discuss her journey of secondary (in)fertility, IVF and the relief she found in the egg donor option. Read on to find out how Anthea is redefining the conversation around (in)fertility through her story of loss, heartache and love.

Anthea’s story:

I got pregnant with my daughter when I was 35 after three months of trying. When I was 37 and my daughter was one, we tried again for a second. We got pregnant after trying for a while and discovered at five months that the fetus had trisomy which meant it wouldn’t be a viable pregnancy. We then turned to IVF and after four times, had an ectopic pregnancy that resulted in a miscarriage, DNC, and chemotherapy to flush out my fallopian tubes. After the ectopic, we took the mandatory break from treatment for six months.

We decided to try (IVF) again by bundling embryos over three more rounds (of retrievals) and banked a total of 11. Our embryos were sent for genetic testing and every single one came back abnormal.

I was now 42 years old. Our insurance had been covering up to 80% up until that point and we were about to go entirely out of pocket. We consulted with our Reproductive Endocrinologist (RE) and he shared that the chances of a viable pregnancy was about 1% based on my age and our history. As a result, our RE recommended that we consider the egg donor route which I hadn’t really thought about up until that point.

We decided to move forward and initially had two failed attempts with possible egg donor candidates. As a result, we decided to go the frozen rather than fresh egg donation route and purchased multiple eggs from one donor. The first egg that we transferred resulted in my son, Simon!

The media gives a false sense of expectation and hope by covering celebrities who get pregnant at 45 or 50. It is very likely that these pregnancies could be the result of donor eggs. It’s so important to voice the option about leveraging donor eggs. In fact, our clinic, RMA NJ does approximately 2,000 egg donor transfers a year!

What was your high?

My high was making the decision and the plan to go the egg donor route. It was the hope in knowing that there was an option (to have a baby), and that it wasn’t the end of the road for us. It wasn’t the original way we thought that we were going to (have a baby), but it was the way that it happened for us.

What was your low?

The low over my entire journey was after banking multiple eggs over three cycles. After all the emotions, medications and money, and then finding out that none of them were viable. My husband and I felt completely defeated.

Do have a silver lining?

My husband. He was so supportive of everything that I was doing, wanted to do, and the decisions that I made. I felt like I really wanted to have another child and give my daughter a sibling.

I knew that I married the right man because we hit rock bottom and were able to get through it together by supporting each other. I know my husband very well but we had never been in this situation before. There is no way of knowing how a partner may be or react during an extremely trying experience, and he was beyond supportive.

Do you have any words of wisdom?

I think that it is important to remember that there are options. I remember someone sharing with me that “only you are going to know when/if you need to change your path”. Be honest with yourself and don’t give up hope. Consider going about the process a different way such as donor egg or adoption. It could save you a lot of heartache, time and money.

People also question whether they could love their (donor egg) child as much as their biological child. Speaking from experience, the answer is YES, you most definitely love that child just as much!

Anthea, her husband and her two children live in New Jersey. Anthea’s love for her children’s care and safety inspired her to launch Homepaired, the first online marketplace connecting families with motivated and talented American students, with the goal of making live-in childcare affordable, accessible and ethical.

Trailblazing with Andrea Syrtash

Photo of Andrea Syrtash by Alexis Mera.

During National Infertility Week, Alexis Mera and I had the opportunity to meet with six fertility warriors who have been bold enough to share their stories publicly. Please meet Andrea Syrtash a fertility force and trailblazer. Although I have known Andrea for years, our first in person meeting was only very recently when our group of fertility warriors got together for this NAIW project.

Andrea has been a trailblazer in the fertility space and has been actively supporting fertility warriors since she founded pregnantish, the first online lifestyle magazine dedicated to helping singles, couples and LGBT navigate (in)fertility treatments. Andrea’s background as a relationship expert and coach regularly featured on national TV shows including Good Morning America and The Today Show, and as the author of He's Just Not Your Type (And That's A Good Thing) and Cheat On Your Husband (With Your Husband), combined with her compassion for the fertility journey, has made her an unwavering authority in the world of fertility.

I had the privilege to connect with Andrea on some of the aspects of her personal journey that I am so pleased to share in our recent interview here:

Andrea, what is your story?

How much time do you have?! Approximately 18 fertility treatments, one open-stomach surgery to remove a large fibroid, eight years of trying to get and stay pregnant, and eight reproductive doctors. I always knew it might take a while to get pregnant because I was diagnosed with endometriosis as a teenager, but I never imagined that it would take as long as it did to meet our baby (in December 2018)! 

After IVF transfer after transfer, and after learning we miscarried a 'heatlhy' baby in 2013 after a D&C, a doctor told me not to do anymore embryo transfers until we genetically tested our embryos. In 2016, I did many more retrievals to try to create enough Day 5 embryos to send away for PGS (now called PGT-A) genetic testing. Once we had healthy embryos, we knew we should try to find a gestational carrier (a surrogate who would use my embryo) to carry our baby to term.

This was another big chapter! Two surrogates dropped out on us and I had no idea how we were going to afford to keep going through this. In January 2018, my first cousin Elana stepped up and offered to carry our embryo. I was so emotional I couldn't respond! We transferred one into her in April 2018, during National Infertility Awareness Week. I remember telling my audience at pregnantish that I had no idea if I'd meet our baby this way, but I was hopeful. In December of 2018 of my cousin delivered our baby girl Arielle (into the world). I'm so grateful and in shock that I'm her mom!

Your High?

I created and launched pregnantish.com to help others navigate this incredibly stressful process right in the middle of my own treatment/IVF. At the time, I was not sure if or how I'd have a baby. Finding a deeper purpose during an experience I was really struggling with was a high for me.I was not only able to use my voice to help others, but I learned so much from others in the community. So often when you're dealing with infertility, you feel alone.

Your Low? 

I had many lows over almost a decade of trying to make a baby! One happened in public at a department store after an appointment where the doctor told me my embryos were growing unevenly. (I later learned it's because I needed estrogen priming, but that's another story!)  A tourist came up to me and asked if she could pray for me. I felt awkward about it, right there in the middle of the shoe racks; we held hands and she prayed while I cried. Another low was learning that I would miscarry again in 2014. By this point, I had been trying for about 4 years and I was so depleted. December 2015 was another low because my doctor told me that I had a 'beautiful perfect looking embryo', that didn’t take. I had done everything (diet, vitamins, taking care of myself) to let it implant. When it didn't work, I felt hopeless. I called the doctor and he told me to stop treatment and suggested more testing.

What was a low then turned out to be a high because more possibilities opened for us once we got more information (as a result of the testing).

Do you have a silver lining?

I got 2 babies out of this! One is my baby Arielle, who I'm so grateful for and who is a joy. The other is pregnantish which is fulfilling because I often hear it helps others who are struggling.

Do you have any words of wisdom?

I used to tell myself and often tell our readers that so much is out of our control when it comes to goals like parenthood, and if you want to be a parent, there will be a path. You don't need to know the how, the when, the where, you just need to know the what which is that you will be a parent. There are so many paths...

Learn more about Andrea, her story and the wealth of fertility resources available through her site pregnatish.

Redefining the Conversation about Infertility

Fertility Warriors from L to R: Andrea Syrtash, Anthea King–Pascual, Jane Jolis, Nathalie Carpenter, Jennie Monness, Rebekah Rosler, Stephanie Rapp. Photo credit: Alexis Mera.

I have thought a lot about the word infertility. It sounds like such an ugly word because there is so much judgement (including self) and lack of awareness around the subject. Even for those embarking on the “journey” there is so much that is unknown. Although the science around it has come a long way, there is still not a guarantee that it will find the underlying cause, let alone solve it to produce a child. 

The word infertile goes against our very basic function as humans to reproduce. And if we can’t do that, we may admonish ourselves for not being “normal” or having tried hard enough, or perhaps not trying the right way (whatever that means). There may be shame, embarrassment, guilt, fear, frustration, jealousy, and, and, and… Societally, we have been taught that all of these emotions are bad/negative and since there is no pride in them, we naturally try to hide them, making the depths of despair associated with (in)fertility even greater. 

I am speaking about all of the above from experience because I have lived it. Do you know how liberating it is to share that publicly? The first time I announced my experience through this blog, I held my breath when I hit publish. I didn’t know what the reaction would be and whether it would be met with public disparagement or disgust, or whether I might even be let go at my corporate job for airing my so-called dirty laundry so publicly. Instead, I was met with responses from people that I knew and didn’t know; that they, their sister, cousin, friend, or colleague was going through it, and would I talk to them about it. In those moments, I understood that I was so far from being alone. I realized that I had been shouldering a greater burden than I had to; and had created more stress for myself by not talking about my (in)fertility story. I will purposely refer to (in)fertility like so moving forward because infertility and fertility are often interchangeable, however I believe that being in the community of fertility is powerful.

By being vulnerable by sharing my own story, I have come to learn that that there are other women who have been voicing their experience and encouraging others to do the same. These fertility warriors are trailblazers, and I recently had the honor and privilege of being in the same room with six incredible women who also see the possibility of change. Alexis Mera was there to capture it all on camera.

To say that it was magical being in the room with these other women is an understatement. We all “knew” each other without actually ever meeting, because although the journey was different for all of us, the end goal of becoming a mother was the same.  Our common bond was cemented in the interest of redefining the conversation around (in)fertility by breaking the silence to get it started.

The silence for all of us at one point or another was deafening. At times the path had been hell both mentally and/or physically, but I believe that we all realized that we could use our strength to give voices and faces to (in)fertility. When. the seven of us met, it was clear that we had found community through authenticity, transparency and vulnerability by sharing, and as a result, the ability to pay it forward by supporting others going through the fire.

This is just the start, by creating community, we discover resources, are empowered by options, and elevate the conversation for support publicly and in the workplace. We have the power to make infertility a safe discussion and promoting its importance for financial support consideration and workplace benefits for both women and men.

Be a trailblazer. Over the course of this week during National Infertility Awareness Week, six fertility warriors will be featured on Fertilust. Each will share their story and their reflections on their experience. Some of the themes expressed by our trailblazers included empowerment, community, perseverance, resilience, options, strength, and advocacy.

We welcome you to join the conversation by sharing your constructive voice in the comments, and/or by reaching out to find out how to tap into the community. 

In collaboration with Alexis Mera who photographed each fertility warrior and provided graphic tees from her collections, you can get a sneak peek into each woman’s story here as shared on Alexis’ blog. Please also be sure to check back each day this week as we highlight each fertility warrior in detail here on Fertilust.

Together we can take the conversation about (in)fertility out of the shadows to normalize it. We can make it inclusive by building awareness and community. By giving it so many voices, we can drown out the judgement, misconceptions and silence around the topic.

Rather than focus on the negative aspects of (in)fertility, we have the opportunity to get IN to the community of FERTILITY. Please join us.