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: Faces of (In)fertility

Photo by Alexis Mera. Shirt design by Erin Halper.

At first glance it would be hard to detect that Stephanie Rapp is a fertility warrior. Stephanie is young, beautiful, vivacious and currently pregnant. And while Stephanie is entirely transparent about her story and the challenges on her path to building her family, you would probably assume that she sneezed and got pregnant. During our interview, Stephanie shares how (in)fertility has many faces and also affects young women. Read on to find out why we should never judge a book by its cover.

Stephanie’s story

My story began when I went on the pill at age 15, and was on it for the next 10 years. Fast forward to high school and college, where I struggled to maintain 100 lbs and hard a hard time putting on weight. After UPenn, I went into finance, working at Goldman Sachs in Fixed Income sales & trading, (through the financial crisis) for eight years. Soon after starting at Goldman Sachs, I was working 14 to 20 hour days and feeling the immense stress and pressure of the job and culture, (which were exacerbated by the climate of the time), and I stopped getting my period. My OBGYN, who I saw at the GS health center, reassured me that it was normal to not get a period while on the pill. After witnessing fertility struggles of people close to me, I decided to take my health into my own hands.

I went searching for a good OBGYN, I started making changes to try and get a cycle back and I went off of the pill. A year after going off of the pill, my situation was still the same. I was still very slender, still working intensely in a highly stressful environment, still working out regularly, still going out often. And still without a period.

I was sent for ultrasounds, CAT scans, MRIs, rounds, and rounds of blood work and more, to no avail. My hobby and passion is nutrition so I enrolled in nutrition school in hopes that I could also find out how to get my body functioning. I changed the way that I ate (bone marrow and collagen, ghee and egg yolks, kombu and kefir, grass fed steaks and cheese), and the way I worked out (yoga and walks, pilates and rest days). I added in acupuncture and supplements. And I started to notice positive changes in the right direction. But when my husband and I got married and started to try for a baby, I never, not once, in many months had a positive ovulation test.

I felt called to share my journey with other women who, surprisingly (had experiences which) were not dissimilar. So many of my colleagues also were experiencing amenorrhea or had suffered infertility. One day, after opening up about my struggles, a friend suggested that I see her fertility specialist. My then OBGYN told me to try for a year because I was so young before proceeding down any alternate paths. I had little to lose so I went to the specialist (that my friend recommended), and within an hour she had honed in on my issue and created a path towards pregnancy.

Patches, pills, shots and six weeks later, I was pregnant with Olivia (now four years old)! Seven months after having Olivia, I went back to my fertility specialist. Four weeks later I was pregnant with Cullen (now almost three years old)! Fast forward again, I went back for number three. A few cycles in I was pregnant again, but at eight weeks had a miscarriage. I elected for a DNC days after the diagnosis which ended up being a lifesaving decision because my pathology determined that I had a molar pregnancy, placental tumor.

Had I waited to miscarry naturally, I likely would have had to have a much more invasive procedure followed by a year or more of chemo(therapy). Instead, I suffered through a long and scary six months of constant blood work to ensure the tumor was not growing back coupled with the most intense fatigue, fog, exhaustion, lack of fervor and joy. Total depletion. I was desperate to feel like me again, but was grasping at straws. Again, I went for blood work and tests and labs; to find nothing. I treated myself with alternate therapies, supplements and nutrients, rest and support, eventually coming out of the hole I was living in after six months. I'm now pregnant with number three, due early July! 

I started a wellness company, EMBODY Wellness Company just over four years ago. We are a holistic wellness and lifestyle concierge, who create customized wellness programs for our individual and corporate clients. Our goal is to clear through the clutter and help our clients accomplish (more than) their goals in a sustainable and lasting way. We specialize in fertility, pre and post-natal and getting your body back after baby, as well as weight-loss, gut repair, clean home and beauty makeovers, corporate workshops, events, talks and more! We also do wellness business consulting for budding companies and practitioners. I am inspired by my work and our clients and love being able to help others on their journey to embody wellness!

Your high?

Each positive pregnancy test and then the highest high, holding my healthy babies! 

Your low?

The molar pregnancy rocked me to my core. It was emotionally sad and taxing, and it physically crushed me too. Feeling joy was too exhausting. I struggled to stay in the moment and enjoy the happiness around me. Even laughter was a strain. And my two kids are so funny! I felt despair and helplessness and uncertainty that the future would clear up. The road ahead seemed rocky and unreliable. My medical bills were crazy. (My insurance covered zero percent. Not even my DNC and all of the prescription hormones that I was on for well over a year.) I felt horrible physically and mentally, and felt even worse about that emotionally. I felt guilty about not being "me" for my kids and husband who needed my support and help, and I was just so so tired all of the time. 

Do you have a silver lining? 

This is a tough question. I think I'll be able to answer that more genuinely when I hold baby number three and see that he is healthy and here! A friend recently told me the timing is great because my older two are at ages where they are so excited for baby and cannot wait to be big siblings. They are thrilled to have responsibilities and teach their little brother their favorite songs, how to eat food, pick out his diapers and clothes. They will both be in preschool so I'll have good 1:1 time with the little guy. 

I truly believe I’m an optimist but I think that some parts of infertility are not lined in silver. I didn't need to have a placental tumor (to learn a lesson or appreciate something else). I don't want anyone else to go through that. I'd much prefer every woman have a linear path to motherhood. In the end, my third healthy child will be the silver lining. That's the most important outcome. 

Do you have any words of wisdom?

There are many ways of becoming a mother. Sometimes, ways we don't plan for or expect. But trust that you will hold your baby one day, maybe after an easy and natural conception, maybe through IVF, or even surrogacy or adoption. But, If you want to be a mom, you will be. 

I also want to add that most importantly that this is your journey and your life. Allow yourself to feel however you fee; mad, frustrated, sad, defeated, joyous, excited, hopeful. Whatever your emotions, they are real and don't need to be explained or justified. Give yourself the time and space to feel and heal how you need. And you don't have to do it alone! seek help from friends, professionals, (this growing) community, family, a journal, whatever you need. Reach out and let others in! You are not expected to be the expert on everything, and you are not failing.

Stephanie, her husband and two (soon to be three!) children live in NYC. If Stephanie isn’t creating meals from her farmers market finds for her family, friends or EMBODY Wellness clients, you can find her dancing and singing along with her kids as they rehearse the complete soundtrack to Frozen. To learn more about Stephanie, please visit EMBODY Wellness or follow @embodywellnesscompany on Instagram.

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.